Scroll down and view patient stories..
more to come! (FORTY-ONE stories so far)
Male/Female: Female
Date/Year first diagnosed: May 2016
Age at diagnosis: 36
Symptoms leading up to diagnosis: Painless, immovable mass in neck
How was diagnosis established: CT scan with contrast, ultrasound-guided needle / core biopsy
What was the size of the tumour at diagnosis and has it grown since? 2.3 cm diameter, not sure if it has grown After diagnosis what further symptoms occurred? The tumor is a bit tender from time to time after the needle/core biopsy. They really had to “dig deep” to get a good sample and I don’t think it fully healed. But the tenderness is barely noticeable.
What emotional feelings were you going through? Very alone and scared. But very very grateful. Grateful that it wasn’t cancer. Grateful that I live less than an hour away from one of the top specialty medical centers in the United States, maybe the world (Mayo Clinic). Grateful that we have good insurance. Grateful for my relationship with God and my family. Grateful that it’s not super urgent and I have time to make really educated decisions. Grateful that I have good doctors and I went from initial primary care physician visit to diagnosis in about 3 weeks. I was also afraid that I was making too big of a deal out of this. I mean, it is completely asymptomatic, is not life-threatening, and doesn’t affect my daily life. I think this is part of the reason I haven’t told too many people about it.
How do you even bring up the topic?
What kind of support did you receive? A ton of support from my husband and from my church. We told our kids and they were worried at first, but we kept it at a high level since they are still pretty young (7 and 4 years old). What type of doctor diagnosed you? The ENT made the diagnosis, who upon receiving biopsy results, referred me to a specific ENT specialist at the Mayo Clinic.
What was the first initial diagnosis (what did they first think it was)? One of four things, from the CT scan: an infected lymph node, a cyst in a lymph node, lymphoma, or a schwannoma. Biopsy confirmed schwannoma.
What did your doctor say about your diagnosis: The first ENT, who is also a head and neck surgeon, said it was very very very rare but is NOT cancer. He stated he has no experience with this type of surgery and gave me the name of the best ENT / head and neck surgeon at Mayo Clinic who has considerable experience with neck and head nerve tumors (30 – 40 in his career). I have had one appointment with this doctor and he seems very knowledgeable and experienced with removing these types of tumors with high success rates. Is your V.S. located in the upper or lower part of your head/neck/or elsewhere: Right side, just above the end of collarbone nearest my trachea. It is displacing and partially crushing the internal right jugular vein and just displacing the right carotid artery (no crushing, thankfully). From the other cases I’ve read, this is pretty low on the neck for these. My ENT thinks it is either on the vagus nerve itself or on the recurrent laryngeal nerve, but is leaning toward the former since it appears from the CT scan to be below the recurrent laryngeal nerve.
What options did your doctor give to you regarding treatments: The Mayo Clinic ENT initially gave me three potential options: (1) Surgery and just cut it out, quick and easy. (2) Explore CK options. (3) Do exploratory surgery. If the tumor is easily removed with nerve damage, remove it then. If removing it will damage or sever a nerve, stitch me back up and try CK. He referred me to a Mayo Clinic radiation oncologist. The radiation oncologist recommended against any kind of radiation for several reasons: (1) It’s never been tried for one in the neck, (2) Surgery has been very successful in treating these, and (3) The risks of radiation causing bigger problems (malignancies, damage to surrounding structures and tissues, scar tissue making follow-up surgery nearly impossible, etc) are higher than the surgery option. That brought us down to a variation of option (1): A single surgery. Carefully remove the tumor without damaging the nerve if at all possible. Even if damage can’t be prevented, the tumor will be removed. What treatment did you choose? As of now, I haven’t chosen a treatment, even though there really is only one option. I am in the process of getting my questions answered regarding the implications of nerve damage. Since he can’t tell if the tumor is growing on the outside of the nerve sheath or through it until he gets in there, I want to be mentally prepared for the worst. I’ve read that vocal chord reconstructive surgery reduces athletic ability because you can only move half the air through your vocal chords when not talking. Makes sense. I’ve also heard that completely severing the vagus nerve in this location can cause heart rhythm issues. I am guessing both of these things (and other effects I don’t even know about yet?) affect an athlete’s ability to do any kind of endurance and strenuous activity. I am very active in my sport of choice and I can’t imagine a life without it. In what other ways will my quality of life be affected? This is probably the thing that scares me the most right now. Part of me thinks it’s crazy to go voluntarily mess with this thing because it isn’t “doing” anything to me. But every specialist, radiologist, and pathologist that has looked at this thing says it has to go because it will just get bigger and harder to remove. And it’s best to do it now when I’m younger and healthy. Why did you choose this treatment? I suspect I will choose this because it is the only option. I have a follow-up with the ENT to answer my many questions later in a couple of weeks.
Any other comments you would like to add: Thank you so much for maintaining this website. It makes me feel less alone. I hope all these patient stories continue to help people with vagal schwannomas better cope with the emotional side of all this.
Patient 40
Male/Female: Female
Date/Year first diagnosed: November, 2014
Age at diagnosis:47
Symptoms leading up to diagnosis: Diminished to Loss of hearing in right ear, head aches when I woke up
How was diagnosis established: Ultrasound, Mri, CT scan, Palpitation ect.. MRI
What was the size of the tumour at diagnosis and has it grown since? 31.1mm
After diagnosis what further symptoms occurred? not really
What emotional feelings were you going through? I just wanted to hear even if I needed a hearing aid. Going into the surgery I was just kept thinking I was going in healthier than I was going to come out (Physically).
What kind of support did you receive? Good family support. Great husband and parents and kids.
What type of doctor diagnosed you? ENT PA and then directed my to an ENT and a Neuro surgeon.
What was the first initial diagnosis (what did they first think it was)? He wasn't sure but said I would have to have an MRI to know for sure. I was there to get it figured out so I pushed forward.
What did your doctor say about your diagnosis? Family Dr was surprised at the diagnosis. She had treated me for a virus and a few other potential aliments but nothing helped.
Is your V.S. located in the upper or lower part of your head/neck/or elsewhere? Lower base of my head into my neck.
What options did your doctor give to you regarding treatments? It had to be removed. I went with what they suggested.
What treatment did you choose? Surgery
Why did you choose this treatment? Didn't seem to be any other options
How has your treatment worked? Great. They think there's possibly a small piece left but they're monitoring it thru MRIs annually.
During your treatment, how did you feel? recovery wasn't too bad but I was able to take it slow.
After your treatment, how did you feel? sluggish
What things did you need to do, follow-ups after your treatment? MRI 3 month and then a year later. However because of nerve damage to my vocal cord I need to have a procedures done on my vocal cord so I would have more of a voice. Also have swallowing issues that I've learned to live with.
Any other comments you would like to add:
I found it interesting that the site mentioned many seem to have low blood pressure. I too have normally low blood pressure. My top number is normally under 100.
Patient 39
Male/Female: Female
Date/Year first diagnosed: Jan 2016
Age at diagnosis: 44
Symptoms leading up to diagnosis: symptoms come and go….headache, temple pain, fullness in ears, ringing both ears, sore throat, feel like I have a lump in my throat, tugging feeling right side of neck, tingling face, lips, tongue, both hand (more on right), lightheaded, throat clearing
How was diagnosis established: I went to the ER on Thanksgiving after running 3 miles with feeling like I was going to pass out, shaking, tingling tongue and hands. Incidental finding of VS after carotid artery ultrasound. Confirmed with MRI neck
What was the size of the tumour at diagnosis and has it grown since? 2.2x.1.0x1.1 cm
After diagnosis what further symptoms occurred? still having symptoms
What emotional feelings were you going through? anxiety fear
What kind of support did you receive? My husband and family
What type of doctor diagnosed you? Ive seen 2 ENT at Jefferson University and John Hopkins. Jefferson Dr said symptoms not typical for VS and John Hopkins Dr agreed but said we are all different. Local Neurologist said symptoms have to be related due to tumor being on my vagus nerve
What was the first initial diagnosis (what did they first think it was)? Carotid body tumor
What did your doctor say about your diagnosis? watch and wait
Is your V.S. located in the upper or lower part of your head/neck/or elsewhere? lower behind collar bone
What options did your doctor give to you regarding treatments? watch and wait, surgery with IE
What treatment did you choose? having Cat scan in April
Why did you choose this treatment? I chose to wait for Cat scan in April because its what dr recommended because they do not seem to think my symptoms are related. I know my body and definitely related but my hands are tied. Not many drs do this surgery since its so rare.
Any other comments you would like to add: I'm frustrated and having symptoms that my drs are saying are not related. I'm a healthy active 44 year old woman who went from exercising 6 days a week, working as an RN and fitness instructor to not working and doing light exercise.
Patient 38
Male/Female: Female
Date/Year first diagnosed: may 2013
Age at diagnosis: 33
Symptoms leading up to diagnosis: unexplained very high blood pressure. Occasional chocking sensations with pain from neck
How was diagnosis established: Ultrasound followed by CT scan
What was the size of the tumour at diagnosis and has it grown since? Ultrasound showed 4cm mass but when removed it was 7cm
After diagnosis what further symptoms occurred? Biopsy was performed and that was very painful and caused a lot of nerve pain in jaw and face on right hand side. This took weeks to subside
What emotional feelings were you going through? Scared because didn’t know what it was, First doctor was unsure of what it was, He took my scans to several hospitals in Melbourne and it took over a month for anyone to give me some sort of diagnosis of what it was. I was told that is was a spindle cell tumor and then a vagus nerve tumor. I don’t think the doctors really knew what type of tumor it was until they went in to operate
What kind of support did you receive? Family and friends have been supporting me through the months leading up to surgery
What type of doctor diagnosed you? vascular surgeon What was the first initial diagnosis (what did they first think it was)? Abnormal lympth node then maybe a para thyroid tumour, then after biopsy it was a spindle cell tumour of unknown origin. After that my CT scans were taken to the hospital for the head and neck department to review and they came back with a vagus nerve tumour
What did your doctor say about your diagnosis? He was very kind and advised that this type of tumour needed to come out and that was really the only option due to its size and also because we didn’t know if it was benign or malignant.
Is your V.S. located in the upper or lower part of your head/neck/or elsewhere? In my lower right hand side of neck near clavicle. Incision was made just below jaw line all the way down to clavicle What options did your doctor give to you regarding treatments? Removal was the only choice due to location of tumour attached to other nerves and arteries and because we don’t know if its benign
What treatment did you choose? .Surgery
Why did you choose this treatment? I wanted the tumour out of my body
How has your treatment worked? Surgery was 3 days ago and I am home and almost pain free
During your treatment, how did you feel? Surgery went well. I stayed calm going into the operating theatre, after I came out of recovery I was in a fair amount of pain but they managed to control that. They advised that the tumour was 7 cm and had grown all around the vagus nerve so it couldn’t be saved, they also had to remove the right handside of my thyroid because that was in the way when they were trying to get tumour out. My vocal cord has also been damaged but they are hoping that this will repair itself over the next few weeks. I had the surgery at 1pm on the Tuesday and was home at 1pm on the Thursday. My neck is a bit sore but it is being managed with the medication they have provided for me
After your treatment, how did you feel? So far so good. Will have to wait and see if my voice is permanently damaged and if so will need a referral to an ENT to have a teflon injection
What things did you need to do, follow-ups after your treatment? Seeing surgeon next week for follow up and to find out the pathology of tumour
What is the expected result of your treatment? Good outcome, hopefully tumour will be benign
Patient 37
Male/Female: Female Age 16 (I am requesting help and insight about my daughter recently diagnosed with a VS). Thank you,
johnfhill64@gmail.com
Date/Year first diagnosed: January, 2016
Age at diagnosis: Age 16
Symptoms leading up to diagnosis: No symptoms. Began to feel and see small lump on outside of neck.
How was diagnosis established: CT scan and needle biopsy about 2 weeks ago. MRI this week. Audiogram done and was normal.
What was the size of the tumor at diagnosis and has it grown since? 3.6cm x 3.3cm x 6.4cm. We go back for another MRI in 6 months (July, 2016) to see if it has grown.
After diagnosis what further symptoms occurred? None
What emotional feelings were you going through? N/A
What kind of support did you receive? Great support from family, friends and faith. Hoping and praying for no more growth and dies and no symptoms develop.
What type of doctor diagnosed you? Her ENT suggested the CT scan and biopsy. He referred us to Head and Neck Center at MD Anderson. MDA confirmed the VS diagnosis once MRI done. They were very helpful.
What was the first initial diagnosis (what did they first think it was)? Soft tissue tumor, then benign VS.
What did your doctor say about your diagnosis?
Is your V.S. located in the upper or lower part of your head/neck/or elsewhere? Left side upper neck and seems to be behind the jaw. Per CT Scan - from the carotid bifurcation inferiorly to the skull base superiorly.
What options did your doctor give to you regarding treatments? We feel good about a team at MDA. For now, “wait and watch” to see if it grows. They think it is slow growing. (Very little blood in the biopsy which I understand is good). Always a possibility of no more growth. Also with no symptoms and younger age, no surgery recommended now. MRI in 6 months to see if it has grown. Surgery would sacrifice the use of the palette, swallowing, some voice issues, and possibly hearing. Obviously as parents, we thought a benign tumor could be removed and all this behind us in a few months. We were overwhelmed when told surgery has so many effects.
What treatment did you choose? For now, I want to see what the MRI in July detects about growth. But I want to start researching options and other specialists. I have read every patient story. It is very helpful. And has brought other treatment methods into question. I would like to ask for your continued help please. There are certain patient stories that more closely resemble my daughter’s case (size, location, younger age, etc). I hope to hear from you and many others about: Your treatment type and why you selected it? Who you considered for treatment and specialist? Post op effects and ongoing nerve consequences? Some were on the verge of receiving treatment or just finished treatment of choice, I would like to know how you are doing and are you pleased with your choice? Cyber knife is of interest? Any other information you think will help is appreciated. I am so thankful this website exists. It has already been helpful to me. Things like adding a neurosurgeon to save nerve, options like GK and CK, specialists, side effects. Please feel free to email me: John at johnfhill64@gmail.com. Also, I can reply with a phone number if you prefer to communicate that way.
Why did you choose this treatment? n/a
How has your treatment worked? n/a
During your treatment, how did you feel? n/a
After your treatment, how did you feel? n/a
hat things did you need to do, follow-ups after your treatment? n/a
What is the expected result of your treatment? n/a
Any other comments you would like to add: Thank you for your help.
Patient36
Male/Female: Female
Date/Year first diagnosed: 3/2014
Age at diagnosis: 31
Symptoms leading up to diagnosis: occasional head aches, but still not known if those were related to tumor.
How was diagnosis established: I first had a CT scan then had a MRI/MRA
What was the size of the tumour at diagnosis and has it grown since? 2.1cm x 4.1cm
After diagnosis what further symptoms occurred? Slight feeling of pressure under ride side of jaw corner area under my ear. Slight clicking nose heard felt while swallowing tilting head back and down. I don't know if these symptoms were related or if I was just hyperaware of this tumor newly diagnosed in my neck area.
What emotional feelings were you going through? Scarred, pain at times, anxious, wanting to get as much information and family time in as possible and I also felt the need to enjoy each moment eating and drinking food that I truly enjoyed.
What kind of support did you receive? I received so much support and love from my family, friends and coworkers it was amazing. I feel as if the power of their and my prayers helped to comfort me during such a hard situation. My husband was a rock for me. Always positive when I could be negative at times. He tried to always comfort me even in the middle of the night when my thoughts would wonder the worst case situations.
What type of doctor diagnosed you? I at first was referred by my PCP to have this CT scan done because of my headaches. After finding this tumor on the CT scan my PCP referred me to a Neurosurgeon and after I had my consult with the neurosurgeon he consulted with an ENT surgeon due to the rare location and large size of my tumor.
What was the first initial diagnosis (what did they first think it was)? A Schwannoma or a carotid body tumor
What did your doctor say about your diagnosis? He said that this is likely a schwannoma and if it was than it would be highly treatable and that I needed to have it surgically removed and after the surgery we can move on with our lives. He said until he got into the area during my surgery then he could truly say what it was.
Is your V.S. located in the upper or lower part of your head/neck/or elsewhere? It was located on the base of my skull pressing on my carotid artery and jugular vein. They kept pointing to the right side of my neck deep in the corner of my jaw below my earlobe.
What options did your doctor give to you regarding treatments? He said radiation would not be an option due to the size of the tumor. He said the only option would be to surgically remove the tumor.
What treatment did you choose? Surgery
Why did you choose this treatment? My only option. I figured because of my age, no children yet, my health, no symptoms it was best to get it removed ASAP.
How has your treatment worked? Great so far
During your treatment, how did you feel? I just has surgery on the 30th of April. The surgery only took about 2 hrs. The ENT and Neurosurgeon both did my surgery. I had a urinary catheter during the surgery so I did have some bladder spasms once that was removed in the PACU. Looking back I feel as if that was the most uncomfortable I have been so far.. I stayed in the hospital overnight and they took out my JP drain the next morning. I did have a set back that next night once I was home though. I laid down to take a nap and when I woke up I feel as if I could not take in any air. My husband called 911 and so back into the hospital I went. They did readmit me they were unsure if I was having a reaction to my pain medicine or just a side effect of the surgery. They did not tell me that a side effect of having this surgery would make it feel like I was having a hard time getting air in due to the swelling and my right vocal cord being paralyzed. I did stay another night in the hospital for monitoring but they said from now on to just take slow deep breaths in and out and to try to stay calm.
I am still newly postoperative, I still have some swelling, pain, hoarseness, slow to swallow.
After your treatment, how did you feel? Good, still sore, swollen, and hoarse, and the right side of my tongue is slightly swollen and numb still..but they said it could take a couple of weeks for the swelling to go down.
What things did you need to do, follow-ups after your treatment? I am seeing my ENT this Monday the 12th of May and a Voice doctor also the same day. I am doing PT at home and some swallowing exercises to make my tongue stronger and prevent my neck from getting stiff.
What is the expected result of your treatment? I am supposed to be cured of the Vagal Schwannoma now, they did remove some lymph nodes during my surgery and said that those came back negative. My ENT surgeon will go over my biopsy results in full at my follow up this Monday.
Any other comments you would like to add: the recovery period is slow but I just recommend taking a stool softener, staying hydrated, I found myself very dehydrated once I got home. I usually love drinking water but for some reason water did not taste the same to me after surgery. I would also alert people of the feeling like you are not breathing enough air in afterwards is normal. During my surgery they had to remove a section of my vagal nerve so my right vocal cord is paralyzed now so during my surgery they injected my right vocal cord to help make it bigger after surgery which will last about three months. I am seeing a vocal specialist to discuss my further options.
Patient 35
Male/Female: Male
Date/Year first diagnosed: June 2013
Age at diagnosis: 50
Symptoms leading up to diagnosis: None, Primary physician thought it was a swollen lymph node and referred me to ENT. After the biopsy, my throat hurt and voice became raspy/hoarse.
How was diagnosis established: Ultrasound and CT scan, then biopsy
What was the size of the tumour at diagnosis and has it grown since? It was the size (and consistency) of a medium sized hard boiled egg
After diagnosis what further symptoms occurred? Throat hurt from ENT pushing on tumor from inside mouth and outside neck at the same time. This and the biopsy (from behind my neck/ear) agitated my throat as well.
What emotional feelings were you going through? Little anxious b/c Doctors thought I could lose my voice and have problems swallowing
What kind of support did you receive? Really good care from local doctor and Dr Netterville’s staff at Vanderbilt. My ENT studied under Dr Netterville and said he was a specialist in this type of surgery.
What type of doctor diagnosed you? ENT
What was the first initial diagnosis (what did they first think it was)? Schwannomma
What did your doctor say about your diagnosis? Very rare. Has been practicing for 35 years and had only seen this about 5 times
Is your V.S. located in the upper or lower part of your head/neck/or elsewhere? Right in the middle
What options did your doctor give to you regarding treatments? Do nothing and watch it or remove it. Based on my age he said it was best to remove it. If I was 10-15 years older then wait, watch and see. Have about a 4 inch incision from under ear forward. Scar is in fold of neck so it’s not that noticeable.
What treatment did you choose? Surgery
Why did you choose this treatment? B/C recommended removal
How has your treatment worked? Yes, so far. Need to have follow up baseline CT.
During your treatment, how did you feel? Simple, no meals, alcohol or any type of medication that would thin blood
After your treatment, how did you feel? OK, sore etc. My right shoulder was weak& sore (bc of nerve that went to it was moved). Was playing golf 6 weeks after surgery.
What things did you need to do, follow-ups after your treatment? Just 1 followup at 4 weeks and CT scan at 6 months.
What is the expected result of your treatment? Normal everyday activities, no restrictions.
Any other comments you would like to add: Looking back it was no big deal, it could not have turned out any better
Patient 34
Male/Female: female
Date/Year first diagnosed: 2014
Age at diagnosis :32
Symptoms leading up to diagnosis: Large swelling on the left side of my neck, sometimes some tingling, loss of voice often.
How was diagnosis established: They did blood work, and biopsy, ultrasound, and CT scan. The CT scan did not show anything unusual, but my lump was an inch long so I knew an MRI was needed and begged my doctor to give me one. My GP didn’t think I needed to see a specialist, she was convinced I had an enlarged lymph node that would go down on its own. Needless to say I went ahead to a local ENT who told me he didn’t know what it was and he referred me to an otolaryngologist in Birmingham, AL. That doctor then referred me to Dr. Netterville in Nashville due to his high success rate in removing schwannoms with little damage.
What was the size of the tumour at diagnosis and has it grown since? Mine started out small and grew a lot in a few months.
After diagnosis what further symptoms occurred? n/a
What emotional feelings were you going through? Mainly I just wanted it out so I could move on in my life. Dealing with it took time and energy away from the things I love to do.
What kind of support did you recieve? I had the best care from Dr. Netterville’s staff at Vanderbilt Hospital in Nashville.
What type of doctor diagnosed you? Otolaryngologist.
What was the first initial diagnosis (what did they first think it was)? My GP thought it was a lymph node. The ENT with 25 years of experience had never seen anything like it. My Otolaryngologist in Birmingham hadn’t done many and referred me to someone with an excellent track record with schwannoma removal, Dr. Netterville at Vanderbilt.
What did your doctor say about your diagnosis? I haven’t gone back to my GP after she told me it would be a waste of my time and money to see specialists.
Is your V.S. located in the upper or lower part of your head/neck/or elsewhere? Upper neck on the left side.
What options did your doctor give to you regarding treatments? I could take it out or watch and wait. He thought it best to take it out.
What treatment did you choose? Surgery. They cut me from behind my ear so I wouldn’t have a scar on my neck, which I felt was very thoughtful.
Why did you choose this treatment? Because I was told they are harder to get out the bigger they are, and that the larger they get the more side effects I’ll have.
How has your treatment worked? It seems to of worked. We shall see over the long term.
During your treatment, how did you feel? It’s not fun prepping for surgery that’s for sure. I like to eat too much. But I woke up with very little pain and was able to leave the next day.
After your treatment, how did you feel? I have a slight case of Horner’s syndrome after they removed my tumor from my sympathetic nerve chain. They tell me that will heal on it’s own most likely. My left eye lid droops a little bit. We were relieved it wasn’t in the vagus nerve sheath. I have some numbness in my left ear, cheek and jaw but I’m told that feeling with come back in a short time frame. With the Horner’s syndrome my pupils are dialated differently. One is smaller than the other and it has afftected my vision marginally.
What things did you need to do, follow-ups after your treatment? I had to have a drain from the incision site which was uncomfortable, and I had to manage that at home. I had follow up visits with my doctor.
What is the expected result of your treatment? That I will heal up quickly, my Horner’s syndrome will fade away, and the tumor won’t grow back.
Any other comments you would like to add: Trust yourself when you can feel something just isn’t quite right. No matter what the cost or time it
takes to figure out what an unexplained lump is, go ahead and do it for your self. MRI’s are the best tool in determining what is going on in your neck.
Patient 33
Male/Female: Female
Date/Year first diagnosed: November 16 2013
Age at diagnosis: 35
Symptoms leading up to diagnosis: None related to the tumor. The tumor was discovered when I had an MRI after severely herniating a disk in my cervical spine which required surgery to repair
How was diagnosis established: MRI – noted a tumor, Ultrasound – confirmed it was not on my thyroid, FNA – inconclusive, repeat USG – same result, repeat FNA – same result, CT scan – noted a tumor, Core biopsy – definitive schwannoma
What was the size of the tumour at diagnosis and has it grown since? 3x5cm it grew over the three months since first noted from 2.5 x 4 cm
After diagnosis what further symptoms occurred? None
What emotional feelings were you going through? I was a mess. I lost all hope, which is quite a statement for an optimistic young person like myself.
What kind of support did you recieve? Terrific support from my boyfriend, friends and family
What type of doctor diagnosed you? Head and Neck surgeon
What was the first initial diagnosis (what did they first think it was)? I was initially diagnosed with ovarian cancer. After finding the tumor in my neck in the middle of cervical disc issues, a complete body scan was done, revealing a large “tumor” in my ovary. I was told the tumor in my ovary and my neck were related (without any biopsy results of either tumor). I sought another opinion, and learned that the “tumor” in my ovary was a cyst which disappeared. Then I was sent to a head and neck surgeon who discovered the real issue.
What did your doctor say about your diagnosis? That it was rare, and that it should come out right away.
Is your V.S. located in the upper or lower part of your head/neck/or elsewhere? Lower part, not far north of my clavicle.
What options did your doctor give to you regarding treatments? Surgery, or surgery.
What treatment did you choose? Surgery
Why did you choose this treatment? I live overseas and it made sense for me to have this treated. Medical care overseas is not the same, and if the problem got worse, I did not want to count on receiving good care there.
How has your treatment worked? Surgery was successful. My voice is very hoarse now, and I don’t have much of an appetite anymore.
During your treatment, how did you feel?
After your treatment, how did you feel?
What things did you need to do, follow-ups after your treatment?
What is the expected result of your treatment?
Any other comments you would like to add:
Patient 32
Male/Female: male
Date/Year first diagnosed: November 2013
Age at diagnosis: 48 just found out 2 days after my 48th birthday
Symptoms leading up to diagnosis: none
How was diagnosis established: mri
What was the size of the tumour at diagnosis and has it grown since? Size of a golf ball ,wont know if its grown until end April
After diagnosis what further symptoms occurred?none
What emotional feelings were you going through? From being alone in a room full of people to denial
What kind of support did you recieve? none
What type of doctor diagnosed you? maxcial facial surgeon
What was the first initial diagnosis (what did they first think it was)? tumour
What did your doctor say about your diagnosis? It was very big ,been there a long time and needs to come out
Is your V.S. located in the upper or lower part of your head/neck/or elsewhere? Behind my upper jaw pushing against the carotid artery and attached to the vagal nerve
What options did your doctor give to you regarding treatments? Its got to come out
What treatment did you choose? no choice yet
Why did you choose this treatment?
How has your treatment worked? Let you know
During your treatment, how did you feel?
After your treatment, how did you feel?
What things did you need to do, follow-ups after your treatment?
Any other comments you would like to add: I am awaiting another nri scan in March , I've delayed the surgeon so I can get my business and home in order
Patient 31
Male/Female: Female
Date/Year first diagnosed: 1/29/2013
Age at diagnosis: 28
Symptoms leading up to diagnosis: Cyst on neck, occasional tinnitus.
How was diagnosis established: Ultrasound was inconclusive, CT Scan pretty inconclusive but first opinion (ENT) diagnosed it as a branchial cleft cyst, biopsied it just in case, came back and said it was a neuroma. Second opinion was another ENT who diagnosed it as vagal schwannoma. Awaiting MRI date.
What was the size of the tumour at diagnosis and has it grown since? They haven’t said. It feels like an eyeball right now, but it swells throughout the day.
After diagnosis what further symptoms occurred? After the second biopsy (where they took 5 syringe fulls of fluid out), swelling, headaches, earaches, throat hurt on the right side, pressure, tight SCM muscle, anxiey.
What emotional feelings were you going through? Fear, anxiety, exhaustion.
What kind of support did you receive? Mom went with me to the doctor’s. Friends tell me I’m going to be ok. I wouldn’t call it support.
What type of doctor diagnosed you? ENT
What was the first initial diagnosis (what did they first think it was)? Branchial Cleft Cyst, then Neuroma
What did your doctor say about your diagnosis? It’s rare. I’m too young for radiation and he doesn’t want to do the surgery because he pretty much said he’d be severing the nerve and I’d go from 100% of being able to swallow and speak. If it gets worse, he’ll consider it.
Is your V.S. located in the upper or lower part of your head/neck/or elsewhere? upper right neck, maybe an inch below my ear and a little to the front.
What options did your doctor give to you regarding treatments? Gave me my options- same as everyone else. Surgery, Radiation, watch and wait.
What treatment did you choose? SurgeryI’m looking forward to treatment options with medical marijuana. There have been some older studies that show cancerous tumors shrinking with it. Why not benign tumors?
Why did you choose this treatment? Haven’t chosen anything yet- I’m scared. I don’t want to lose my beautiful voice forever.
How has your treatment worked? We’ll see!
Any other comments you would like to add: This process is really scary. I wish there were a more convenient way to look up doctors who specialize in this treatment so there is a better prognosis than severing the vagus nerve completely.
Patient 30
Female
Diagnosed 4 years ago at 46
symptoms sharp pain to neck and lump
For diagnosis I had an MRI and CT Scan
First time diagnosed was 2 cm, now before surgery over 4 cm tumor wrapped around the artery and jugular vein.
Emotional feelings was just concerned
Support from husband .....no comments
Type of doctor that diagnosed was ENT
He said to have it under observation
Options was just observation, But the lump was growing too fast, saw multiple doctors no-one wanted to do the surgery
Finally I found a Neurosurgeon that was willing to do surgery
After surgery, had pain and was swollen, but a few hours later I was talking, next day I asked to be released.
Today is the third day after surgery and I feel great! They were able to remove the entire tumor, my face looks normal now, I am already doing housework. I am happy!
I was concerned to have my surgery in a very small hospital, but my doctor said, "all you need is a good surgeon and good anesthesiologist", I had excellent care, from day one until I left, I wanted to leave next day because I felt fine (normal pain, but I am a very strong women, nothing I could not take). The doctor said the lump was a size of a golf ball between my jaw line and neck, was making the left side of my face look bigger. They had to re-align the artery. My sons are very helpful and supportive, always positive. I have a very large incision in my neck but it doesn't matter to me, I am going back for a checkup in two weeks. I am very very happy. Thank God and the excellent doctor and staff. Anyone with a question is welcome to email me at sansan493@rockemail.com
Patient 29
Male/Female:
Male
Date/Year first diagnosed:
July 1st, 2013
Age at diagnosis:
49
Symptoms leading up to diagnosis:
Tinnitus like symptoms, dizziness, fatigue and headaches. It all started 6 months prior to diagnosis with “white noise” in my ears. Since I was a musician in my younger days, I figured loud music had taken its toll and this was my price to pay. I use an iPod a great deal and thought perhaps it too was damaging my ears. I went to my Family MD to ask and was referred to an ENT. She suspected I had ear crystals. Over the course of time I noticed fatigue and dizziness setting in. I began to complain and missing work around May 2013. Went back to Family MD and was told it was most likely stress. I was referred to Physical Therapy for “stress headaches”. I was treated twice and knew something was amiss. By June, I was noticeably unstable on my feet. I was teased at work for acting drunk by a friend. Went back to the Family MD July 1st and insisted on X rays or a MRI to rule out anything crazy.
How was diagnosis established:
My doctor had me take some X rays and an MRI immediately and my tumor was confirmed on July 1st.
What was the size of the tumour at diagnosis and has it grown since?
I don’t really know what size it was. I can assure you that one of my ENT’s told me as of 9/20 that it was “big” as his eyes opened considerably.
After diagnosis what further symptoms occurred?
I had nothing further since I was instructed to go to the hospital right away for a biopsy. My actual surgery was not scheduled until July 24th. To be honest, it was such a huge relief in a way that I think the physical aspects lightened up. I went back to work up until my surgery.
What emotional feelings were you going through?
A bit of denial really. I couldn’t believe I had a brain tumor. I have had three GREAT friends suffer and two of them died. I had a hard time accepting it and I sort of joked my way through it. I guess when I was told it was benign it was such a huge relief that I just knew I would be alright. I have great faith in Jesus Christ and knew I could lean on him in this time of my life. Spiritually I was fine, on the surface I took it in stride. My friends and family were far more scared and prayed constantly over my recovery. I felt completely safe in the hands of the Holy Sprint and the doctors that I so too interested in the journey to notice just what was a bizarre experience in hindsight.
What kind of support did you recieve?
I had great support from my wife and kids. They were very worried naturally but I think they felt comfortable by my attitude and therefore made me more comfortable. My boss is such an incredible friend that made me feel so good. I had no worries about my work or family and friends. Everyone was incredible.
What type of doctor diagnosed you?
Family MD diagnosed a tumor but it wasn’t until I got into the hospital and was officially diagnosed with a Schwannoma by a Neurosurgeon.
What was the first initial diagnosis (what did they first think it was)?
A tumor was all I heard. My Family MD took me to her radiologist to see what he thought. He was sure it was benign by looking at it but that was all I had to go on for 2 days.
What did your doctor say about your diagnosis?
After I was diagnosed he explained exactly what a Nerve Sheath Tumor is and what I could expect. He was concerned if it was “sticky” or not. He explained that my outlook would be good once it is out but it depends on how cooperative the tumor wants to be during surgery. He explained that it was dumbbell shaped and pressing on my left%
Patient 15
Male/Female: Female
Date/Year first diagnosed: sep 2007
Age at diagnosis: 27yrs [31 now]
Symptoms leading up to diagnosis: Jabbing pain in left side of neck and ear from age 15 {ignored}, approximately ten ‘cafe au lait’ spots looking like large pale moles appeared on chest and back aged 21, increasing to approx 50 by age 27, but were unrecognised by 4 doctors over the years and ignored. After a car crash aged 23, a whiplash injury masked the developing pain in my neck and left shoulder, which gradually increased to such a degree that it made my neck immobile, and constantly aching with jabs and stabs of pain that radiated down from my ear, through my neck and then through my left shoulder. The best way i can describe the pain is like having an elastic band in the neck that was pulled, twisted, and torturously ‘twanged’ with resonating snaps stings and dull aches. These pains were coming regularly from every 10mins, to every 10secs, sometimes with an hour or 3’s rest. I could not sit or lay comfortably for 3yrs, which affected sleep and mood very much, and i was increasingly getting acid reflux, severe headaches, specifically behind my left eye, loss of appetite, and periods of nervous anxiety in which my whole nerves seemed on edge and tremor-like, which doctors put down to feeling ‘under the weather’ since losing my spleen in the before mentioned car crash. I had also lost most of my hearing in my left ear and could not bare that side of my head to be touched. Despite physiotherapy for suspected and prolonged whiplash, and repeated visits to my doctor to ask for a more thorough investigation of this pain, it wasn’t until looking at my recurring sore throat in the mirror, i was shocked to finally notice a large bulbous mass on the left side in the back of my throat just above the tonsils, compressing and displacing the soft palate down towards my tongue.
How was diagnosis established: On first visit to show my doctor, i was sent home with antibiotics and told not to worry, he even hinted at hypochondria [!]....3 months later, i worked up the courage to go back and asked to see another doctor, who immediately called in five more doctors to view the obvious mass before sending me straight to the ENT as an emergency just 2 hours later. At the ENT, a small camera inserted down my throat revealed what was described to me as an unusually large lesion in the pararpharengeal space that continued down my throat to the voice box. I was kept in overnight in preparation for the next days Ultrasound, CT, and MRi, and i was ‘put under’ for a biopsy of the mass, from within my mouth. Results revealed a tumour that had been growing for so long, that it had compressed most of my left ear canal, and extended into many areas on the left side, including the skull base which was so affecting my shoulder, also pressing on the brain stem, up against the back of my eye, and down the side of my throat. Original suspicions were of a number of neurofibromas, but biopsy suggested a unilateral schwannoma growing outwards to any available space, hence it seeming like 3. After the tumour was removed, it was confirmed as a schwannoma of the vagus nerve, although one doctor mentioned a smaller neurofibroma that had influenced the ‘cafe au lait’ spots, which after 9yrs, had rapidly started to fade only 4wks after the first operation.
What was the size of the tumour at diagnosis and has it grown since? I was told the tumour was the size of approximately 3 oranges, and was told repeatedly that it was amazing they hadn’t been found before now due to the discomfort i was in. Since the first removal, they have only reached approx 10cm x 4cm x 3cm before being removed again.
After diagnosis what further symptoms occurred? Well i have now had five operations in 4 yrs to remove the tumour, but as of yet it keeps returning. The good news is that my neck movement and hearing were instantly returned after the first op, I felt TEN YEARS younger :D and all compression pains disappeared until the tumour was becoming large again a yr or so later. Heart burn got a little worse for a while, still have little or no appetite except for chocolate lol, and i still get the jabbing and stabbing pains regularly that can become embarrassing in public places if you cry out loud, but at least i can now get out of bed with a smile on my face. The down side, is that recovering from some of the operations was harder than expected, including an infection and abscess after one op that required re-opening the scar on my neck, very sore and stiff, and it’s a scary thing trying to eat but choking mostly, for a wk or 2, and six hrs in surgery can really drain you on top of weight loss and worry. I have vocal cord paralysis down one side, and couldn’t make a lot of sound at first, often feeling faint if i tried too hard. My voice is almost back to normal now but my singing days are over (: also, nerves at the base of my tongue were damaged, and so my tongue is somewhat swollen and deformed on one side, but you learn to adapt! I now also have Horners Syndrome, a weakening of the nerves to the left eye, resulting in eye-lid droop, non-reflexive pupil, and under-use of that eye, as well as headaches and lack of sweating to the skin on left side of head. I also have First Bite Syndrome, very complicated and there’s been little research on it, but it’s a horrendous instant pain in left side salivary glands on initial smell or taste of food or drink, as if you’re salivary glands are squirting acid poison into your head jaw and teeth. Fruits and strong tastes are greatly avoided....although even water can send you to the worst heights of pain sometimes. The pain is immense, lasts for up to ten seconds and then subsides just as quickly, but is present for up to the first ten mouthfuls before reaching a level where you can finally bare to chance chewing as normal. And it starts again at your next meal or snack from within an hour. My surgeon knew nothing of first-bite syndrome and rubbished my pain until i eventually found internet evidence to explain it. Apparently its quite common with vagal operations, yet he’d never came across it before. The main point, is that although treatments are being investigated to little or no success, the pain is manageable. With time, you learn to introduce food slowly to your mouth, and lessen the initial impact. And that way you can still eat what you like, you just have to be patient. But there are still times when walking my dog or heading through town, a slight whiff of something tasty in the air can cripple me with pain for a few long seconds. You just have to be careful!
What emotional feelings were you going through?, Mostly annoyance with doctors for not giving me any credit for knowledge of my own pain patterns and developments over so many years, and between operations.... certainly helped channel my fear i think :D especially when i was always proved right lol.
What kind of support did you recieve? Just medical; info, choices etc. Good family support, though they were probably more scared for me than i was.
What type of doctor diagnosed you? ENT surgeon plus his band of merry men, and a neurologist eventually.
What was the first initial diagnosis (what did they first think it was)? Neurofibromatosis [NF]
What did your doctor say about your diagnosis? Very positive about probable outcome...That it was a spontaneous genetic mutation causing a singular tumour, not NF.
Is your V.S. located in the upper or lower part of your head/neck/or elsewhere? Both! Currently travelling further up to the brain stem, and again down the throat and base of skull.
What options did your doctor give to you regarding treatments? surgery...no other options explained due to size and compression on other structures.
What treatment did you choose? Surgery, although now i am researching the CyberKnife thanks to this amazing site.
Why did you choose this treatment? See “treatment options” section
How has your treatment worked? It’s an inconvenience having Horners, and First-bite Syndrome, and the tumour is still returning, but i have my life back,. Its still worrying, knowing more operations will be needed, especially since the last operation the doctors were thinking of splitting my jaw to allow them to access the brain stem more easily....but the Doctors and Surgeons are doing what they can, and in the last 4yrs, i can’t thank them enough for the improvements their first operation brought me so immediately.
During your treatment, how did you feel? Scared...Just wanted to get on with it.
After your treatment, how did you feel? 1st operation- so relieved by getting movement and hearing back! All other ops....Worried and disappointed.
What things did you need to do, follow-ups after your treatment? Tongue and Speech therapist, only 8 sessions needed. Checked every six months with MRi, operation every year or so, so far.
What is the expected result of your treatment? Unsure really, awaiting scan results and discussion now as ignored the tumour for 8months until i finished my final year at Uni, just last month. In myself, i already know the tumour is back, i can see it, and feel it, and unfortunately i can now also feel all the same pains starting to manifest on the Right side too. Hopefully one of the operations will work eventually and it won’t return.... but if it does, then so be it :D we all know, there are a lot worse things out there than a benign tumour! ........Take care everyone x
Patient 14
Male/Female: Male
Date/Year first diagnosed: April 2011
Age at diagnosis: 12 years old
Symptoms leading up to diagnosis: headaches with vomitting
How was diagnosis established: CT Scan for mass and fluid on brain, MRI for location , and Surgical Biopsy for actual diagnosis.
What was the size of the tumour at diagnosis and has it grown since? Was not given measurements, Dr. said it was about the size of a marble.
After diagnosis what further symptoms occurred? Underwent biopsy surgery immediately after finding tumor. After surgery for biopsy, Jordan had some issues with numbness of the top of his legs, his walking was unsteady (however he could ride a bike like no other), and depth perception was a little off.
What emotional feelings were you going through? Jordan was as solid as a brick house when it came to emotions about his situation. He did not sulk or pout around about having a brain tumor, however if he was asked to do chores, even the smallest task, he made sure everyone knew he had a tumor. He had a great sense of humor about it and made jokes frequently. I'm not going to say it didn't bother him, because the morning of his surgery he was very afraid, that was the first time I had seen him cry about it. I on the other hand (his mother) was not as brave as Jordan, but I did not show it unless alone. I was scared to death. No parent wants to hear their child has a tumor. I am a hairdresser who has a repeat clientele, so I am close with my customers, each day I worked Jordans tumor was a topic of conversation many times over. Each feeling was different, but it definitely helped me as a mother cope with the situation hearing other peoples stories and they were all positive.
What kind of support did you recieve? Jordan, and our family have so much support coming from every direction. He is the oldest brother to 2 brothers and 1 sister, they never treated him any different than before he was diagnosed (they still fought with him equally as before). On the day of his first surgery we had 15 family members show up at the hospital, 9 at his second, and tons of visitors in between and many more to come. Jordan has also been accepted to receive a wish through the Make A Wish program which is an amazing organization that definitely keeps him motivated by supporting his speedy recovery with the reward of a granted wish. He is ecstatic about that. There will also be a benefit for Jordan in July to raise money since I am the sole provider for the family and am taking off of work for several weeks to be with my baby boy. So needless to say, I bellieve our support system is the best we could ever ask for. Oh, and I can'[t forget the countless teenage girls on his facebook that swoons over him daily, hes loving that.
What type of doctor diagnosed you? Pediatric Neurosurgeon
What was the first initial diagnosis (what did they first think it was)? It was first just diagnosed as a schwannoma, unsure of what nerve the tumor was originating from. It wasn't until just yesterday after his second surgery was it confirmed to be a vagal schwannoma.
What did your doctor say about your diagnosis? He felt very positive at all times. Although it is extremely uncommon in children, Jordans doctor was very confident that he, with his team of neurosurgeons and specialists (which he formed from children’s hospital and a regular hospital) could successfully get rid of this tumor with minimal damage.
Is your V.S. located in the upper or lower part of your head/neck/or elsewhere? At the base of the brainstem, wrapped around the nerve
What options did your doctor give to you regarding treatments? this was the option he strongly recommended, he suggested radiation alone could do more damage than good. He will do one strong dose of radiation aka gamma knife treatment within the month to destroy the 1% still attached to the nerve
What treatment did you choose: Jordan is being treated at the #5 Children's hospital in the U.S. with the best Neurosurgeons from Childrens's and a sister neighboring hospital (since they deal with adults with schwannomas), so we agreed to surgery and gamma knife radiation.
Why did you choose this treatment? His team of doctors are the best of the best, they met several times and about 15 of them voted that this was the best treatment plan for Jordan. I wanted him to be safe and healthy, and I trusted these doctors to do what they promised they could do, they showed the utmost confidence and I appreciate that.
During your treatment, how did you feel? Jordan is still going through his treatment, both surgeries are over, however this is only the day after his second surgery so he is still recovering, but we expect great things.
After your treatment, how did you feel? na
What things did you need to do, follow-ups after your treatment? na
What is the expected result of your treatment? complete removal of tumor
Any other comments you would like to add: As a parent, this has been a very humbling experience for me. No one can ever know what it is like to be told that your child has a brain tumor unless they have been there. Nor can they know the pain you feel when you as a parent can't make it go away, or make promises that they will be just fine when you don't even know for sure. Faith in God and faith in Jordans doctors has got me where we are today. I have said prayer after prayer, begged and pleaded with God and asked every question I could think of, just to have peace. But the satisfaction of sitting right here by my son, knowing he is going to be okay now is the very best gift a parent could ever receive. Jordan should be inspiration to all diagnosed, he is truly an angel sent from above. I have never met a real hero, until now.
Patient 13
Male/Female: Female
Date/Year first diagnosed: September 2006
Age at diagnosis: 40
Symptoms leading up to diagnosis: felt like my throat was closing u,p sever swallowing difficulty and pain in my tongue. Lost several pounds due to lack of ability to swallow without choking (Very scarry)!!!! Had lots of headaches but did not link them with the tumor until recently. Oh and constant tickle in throat with cough all day and mostly during meals as I choke on food stuck in my throat. Weak voice ( Could not yell at my husband and kids). BUMMER!
How was diagnosis established: MRI after being ref. To Neurologist by my ENT (several visit to him to try different medications and so on)
What was the size of the tumor at diagnosis and has it grown since? Small but severe damage (4cm x 1.6) My tumor involves 9-12 cranial nerves. Between my carotid and Jugular BAD LOCATION FOR A GROWTH!
After diagnosis what further symptoms occurred? Slow growing, treatment with gamma Knife at the mayio Clinic in Rochester Minnesota within a few weeks from the time I had all my MRI’s done AGAIN at Mayo since they want all their own records..very thorough!
What emotional feelings were you going through? Scared and alone (especially at the dinner table after everyone else is done & gone and there I sit alone for another 20 min or so to finish my meal)
What kind of support did you recieve? Lots from husband, friends and family
What type of doctor diagnosed you?: Neurologist who then sent me to a Neuro surgeon.. from there I was so afraid I called my brother in law who works at the Mayo Clinic and he hooked my up with the absolute best Neurology group ever!!!!!
What was the first initial diagnosis (what did they first think it was)? ENT treated me for acid reflex for about two weeks and then I can’t remember what else he might have thought..I was sobbing in his office the day he mentioned MRI and Neurologist ....WTF is wrong with me I said!!!! I actually said Hell but whatever!
What did your doctor say about your diagnosis? SURGERY NOT AN OPTION..I would be on a feeding tube if they tried to remove the tumor ,but Gamma Knife is very successful ,the tumor essentially will die and stop growing but of course they have no idea how my recovery will go as far as regaining my swallowing or what other issues the tumor has caused. The Gamma Knife Radiation DOES NOT DAMMAGE ANY SURROUNDING TISSUE he assured me! However now 5 years later I have a lump under my right ear that hurts and my neck and right side of my head feels like its being tugged like a rubber band..Cluster headaches pain in my neck my ear and throat hurts...Muscle spasms in my neck muscle. Pretty much same as everyone else. Cannot wear a ponytail headband and now my sunglasses even rub on the nerves and cause a headache ARGH!!!!!
Is your V.S. located in the upper or lower part of your head/neck/or elsewhere? Base of the skull between carotid artery and Jugular foramen.
What options did your doctor give to you regarding treatments? Gamma Knife ( or if I wanted to do the Cyber Knife I could do that but again I have access to the Mayo Clinic so Gamma Knife was the way to go!) I was SCARED!
What treatment did you choose? Surgery, watch & wait, radiation, herbal ect..NA
Why did you choose this treatment? NA
How has your treatment worked? Have had improvement with swallowing however I feel as though most of the improvement is from overcompensation of other muscles getting stronger because they are working harder than ever to force the food down! My tongue atrophy is almost gone (Very surprised and impressed I might say ) Water still even goes down slow,,I can’t tell you how badly I miss chugging a glass of water when I’m really thirsty.....I have trouble, I cannot tilt my head back while swallowing...I choke!
During your treatment, how did you feel? Just fine
After your treatment, how did you feel? Just fine
What things did you need to do, follow-ups after your treatment? MRI’s every year for five years
What is the expected result of your treatment? Good
Any other comments you would like to add: I am having new symptoms in the last 3 months I now have a lump under my right ear, i have never had outward visible symptoms that i could feel with my hands. Nor did my neck hurt to the touch until recently. My scalp is getting very tender and the headaches are getting more constant..My ear and throat also hurt. MY BIG QUESTION TO ALL OF YOU OUT THERE IS ; ARE ANY OF YOU TAKING ANY NEROLOGICIAL PAIN RELEIVEING MEDS???? AND HAVE YOU EVER HAD A PHYSICAL THERAPYST DO ANY TYPE OF MASSAGE ON YOUR NECK TO RELIEVE THE TENSION AND PAIN??? I AM STARTING A SERIES WITH A PT NEXT WEEK AND WOULD LOVE TO HEAR HOW YOU ARE COPING WITH THE PAIN...
Patient 12
Male/Female: Female
Date/Year first diagnosed: February 2011
Age at diagnosis: 56
Symptoms leading up to diagnosis: Small lump that had grown from the size of a pea to much larger in 6 months
How was diagnosis established: Ultrasound with needle aspiration, exploratory operation, then MRI
What was the size of the tumour at diagnosis and has it grown since? 5x2x1.5 think it has grown again but don’t know if mind playing tricks!
After diagnosis what further symptoms occurred? Jabbing ear pain, but has since stopped, slight cough and feeling of something stuck in throat. Also slight dizziness if move and change direction too fast.
What emotional feelings were you going through? Relief as GP thought might be thyroid cancer, so to find out it was benign, allbeit tricky to deal with was good news.
What kind of support did you recieve? Initially told no one until I had to go in for operation, had lots of family for Xmas and didn’t want anyone to worry until they had to. Since they have known, they have all been great.
What type of doctor diagnosed you? Local Ent, Head and neck surgeon Otorhinolarygology, then referred to Professor of Otolaryngology, Guy’s London
What was the first initial diagnosis (what did they first think it was)? Unsure although I get the feeling that my initial surgeon knew it was something unusual, then after op he diagnosed VS and referred on to Skull base surgeon.
What did your doctor say about your diagnosis? Very rare !!!!! same story as everyone else
Is your V.S. located in the upper or lower part of your head/neck/or elsewhere? Middle to upper right neck under jawline
What options did your doctor give to you regarding treatments? Surgery as this was growing faster than usual schwannoma and slight variation in shape.
What treatment did you choose? Surgery,
Why did you choose this treatment? As above, took surgeons advice. He was a very positive person and has seen these before, reassured me a little, although usual suspect risks, swallowing, voice problems, but he seemed to think it would be okay and any problems could be sorted out.
How has your treatment worked? Scheduled for 23rd June, will let you know
During your treatment, how did you feel?
After your treatment, how did you feel?
What things did you need to do, follow-ups after your treatment?
What is the expected result of your treatment?
Any other comments you would like to add: Reading other peoples stories and also your own has been a great help, I think you have done a fantastic job and I really hope that when you go back you have the best result, Good luck!
Patient 11
Male/Female: Female
Date/Year first diagnosed: May 1996
Age at diagnosis: 27
Symptoms leading up to diagnosis: None that I was really aware at the time, my doctor was ruling out aneurism since my dad had recently passed at a young age from one
How was diagnosis established: MRI/MRA.
What was the size of the tumor at diagnosis and has it grown since? 2.5 by 1.7; remarkably it has shrunk this year to 1.2 by .5
After diagnosis what further symptoms occurred? I realized that all the years that I had been passing out so easily it was from my tumor. I also have cluster headaches and although they can not directly link it, it seems so many of us have some sort of migraine headaches. I also have enlarged glands on a constant basis on the same side as my tumor, so much so that they show on my MRI.
What emotional feelings were you going through? When I first found out it was quite a shock. I felt very alone but at the same time I was glad it was me and not someone I cared about since I felt I was strong enough to go through something like that. I wanted to be as educated as possible but back then, there was so little information.
What kind of support did you receive? Friends were a great support but unfortunately my husband at the time wanted me to “forget about it” so in the end we parted ways.
What type of doctor diagnosed you? My neurologist found my tumor but was unable to diagnose. It was my otolaryngologist at the Cleveland Clinic that diagnosed me. The doctor I had is now at Duke.
What was the first initial diagnosis (what did they first think it was)? Vagal schwannoma
What did your doctor say about your diagnosis? They needed to watch it closely for a period of time since diagnosis was made on scans and not by biopsy. Since mine hadn’t grown and wasn’t causing me great issues it was best to leave it alone.
Is your V.S. located in the upper or lower part of your head/neck/or elsewhere? Mine is located in the base of my skull in the hypoglossal area right where all the nerves and carotid come together before they go out of your head to go down your neck.
What options did your doctor give to you regarding treatments? If mine were to grow they told me the only real treatment would be for total removal of the nerve. Now that was years ago. Now if it were to grow I would ask about CK or other treatments. I don’t think I would do surgery at this point in my life for my VS.
What treatment did you choose? Surgery, watch & wait, radiation, herbal ect.. Watch and wait
Why did you choose this treatment? It seemed to make the most sense. My doctor recommended and I also got a second opinion at the House Ear Clinic in LA.
How has your treatment worked? Great! I have had no treatment at all and my tumor has shrunk!
During your treatment, how did you feel? I was more anxious during the first year or two, especially when it came time for me to have an MRI with just watching. But then I got used to it and really don’t think that much about it.
After your treatment, how did you feel? I feel fine especially since I am only going to get checked every 2 years now. I feel very lucky.
What things did you need to do, follow-ups after your treatment? Nothing
What is the expected result of your treatment? My doctor told me at my last visit that he expects with my current shrinkage to expect my tumor to continue to shrink. He really can’t explain why other that it is dieing off. He said that I am the only one that he knows of with a VS that this has happened with.
Patient 10
Male/Female: Female
Date/Year first diagnosed: April 2011
Age at diagnosis: 54
Symptoms leading up to diagnosis: I had been aware of a painless lump in my neck, just under the jaw on the left side. I thought it was a swollen gland. In retrospect, I had been experiencing some tinnitus on that side and my voice was a bit croaky after teaching a class. My blood pressure was erratic and I had pain in my shoulder blade on the same side as the tumor.
How was diagnosis established: When I told my GP about the lump, he sent me for an ultrasound and then, after getting the report (which just described it as a large mass) he referred me to an ENT specialist who ordered an MRI, CT scan and fine needle aspiration (biopsy). The ENT rang me a few days later to tell me he thought it might be a vagal schwannoma. To confirm the diagnosis, he arranged for my case to be discussed the next day at the Head & Neck Department’s diagnostic clinic. It was like being the patient in an episode of ‘House’. After a lot of prodding and muttering while looking at my scans, they all agreed it was indeed a vagal schwannoma.
What was the size of the tumour at diagnosis and has it grown since? 4 x 2 x 2cm. A second MRI in July measured it at 4.7 x 2.2 x 2.6cm.
After diagnosis what further symptoms occurred? I could hear my heartbeat in my ear when lying on my side. When I tried to sing, I could only croak. Swallowing wasn’t difficult but it was less automatic.
What emotional feelings were you going through? Panic, anxiety, stress - but also relief that it was not a malignant cancer.
What kind of support did you receive? Husband was fabulous. Family, friends and work colleagues all very supportive. When I told the senior managers at work they said to take as much time as I needed to find a treatment plan and for the post-treatment recovery.
What type of doctor diagnosed you? It was an ENT specialist who gave me the diagnosis and this was later confirmed by a number of head and neck doctors but the condition was first mentioned as a possibility by the radiologist in the first MRI report sent to the ENT. I only discovered this later when I was given copies of the reports by my GP.
What was the first initial diagnosis (what did they first think it was)? GP initially said it could be anything from a blocked salivary gland to a carotid body tumour or even lymphoma.
What did your doctor say about your diagnosis? ENT said it was a very rare condition, that schwannomas were generally benign but the fact that mine was on my vagus nerve made it nasty. He said it needed to be removed because it would cause serious problems by pressing on adjacent structures (mass effect) and would eventually affect other cranial nerves (particularly the 12th).
Is your V.S. located in the upper or lower part of your head/neck/or elsewhere? It extended up under the jawline in the parapharyngeal space.
What options did your doctor give to you regarding treatments? The first ENT recommended surgical removal and said that this would require sacrifice of the nerve. I asked for a second opinion. The second ENT confirmed that the advice was sound but added that Ii could also consider a period of watchful waiting and then surgery or try radiation. He said radiation was often used for vestibular schwannomas but it was not generally recommended for other schwannomas unless the patient was unsuitable for surgery as the radiation could have adverse effects on adjacent tissue. When I asked this surgeon about intracapsular enucleation (removing the tumor without sacrificing the nerve), I was told that it was just as likely to result in a vocal cord palsy and could allow the schwannoma to regrow so it would be better to accept sacrifice of the nerve, ‘accommodate’ to the voice and swallowing problems and be reassured that the schwannoma would not return. The third ENT I consulted did at least look at the articles I had brought (on nerve sparing surgical approaches to the treatment of VS) and said he would consult colleagues to see if this was possible. Unfortunately, at my next appointment, he said his colleagues had confirmed that it was not possible to excise a vagal schwannoma without sacrificing the nerve. He offered to do a thyroplasty (to splint the paralysed vocal cord) in the same operation as removing the tumor. Only one of these ENT surgeons had any experience removing a schwannoma from a vagal nerve yet all three felt they knew enough to advise me that my ‘best option’ was a form of treatment which was guaranteed to cause serious deficits which would degrade my quality of life forever. This was despite the fact that, in the past 10 years, there have been a number of published case reports describing a new nerve-sparing technique which offers a much better chance of a good recovery. My GP supported my quest to find a surgeon who would use this new technique but was apologetic that he had not been able to locate an ENT who could/would use this technique. He said that, if he was in my shoes, he would track down one of the authors of the case reports – even if that meant going overseas. In the end, I only had to travel interstate rather than overseas.
What treatment did you choose? Once I was able to find the right surgeon, I chose to have the schwannoma surgically removed. I gave up looking for an ENT and, instead, starting looking for a neurosurgeon with extensive experience treating schwannomas. I found a neurosurgeon (Dr Michael T Biggs) who had published articles on the treatment of spinal nerve schwannomas and schwannomatosis. He had never operated ona VS before but I knew he had extensive experience treating acoustic neuromas (vestibular schwannomas) and these are equally tricky. ENT surgeons tend to have a monopoly on treating conditions involving the parapharyngeal space but, when I told Dr Biggs that the only surgical plan I had been offered involved pre-emptive sacrifice of the vagus nerve, he agreed to take my case. He said he would arrange to have an ENT assist in the surgery (which was reassuring) but he would excise the tumor from the nerve. Adopting a multi-disciplinary team approach makes sense as ENTs know the territory but neurosurgeons have more experience operating on nerves using microsurgical tools. Even though it meant having the surgery 1000 klm away from home
Why did you choose this treatment? I chose surgery because I wanted the tumor out of my head. I knew that I would be better able to deal with post-op complications than the anxiety caused by having an avocado-sized
tumor in my head (so that ruled out watchful waiting and radiation which would leave a blackened tombstone behind). However, I would not have gone ahead with the surgery until I had located a suitably experienced neurosurgeon who planned to use intra-operative nerve stimulators and nerve monitors to minimize nerve damage and planned to have an ENT assist in the surgery.
How has your treatment worked? The outcome has been brilliant. The schwannoma was totally removed and I have NO voice or swallowing problems. I was eating normally within 24 hours.
During your treatment, how did you feel? N/A I was anaesthetised so I didn’t feel a thing.
After your treatment, how did you feel? Once the anaesthetic wore off, I only needed paracetamol for a couple of days. The incision was quite sore and left a raised red welt. After 5 weeks, I started treating it with a gel dressing at night and within a week it had flattened the scar considerably. I was back at work 3 weeks after surgery and back kayaking after 5 weeks.
What things did you need to do, follow-ups after your treatment? As the histology confirmed it was a benign schwannoma, the neurosurgeon said there was no need for me to fly 1000 klm back to Sydney for a follow up visit as he was sure he got it all but, if I wanted to, I could have another ultrasound after 12 months to check that it has not come back.
What is the expected result of your treatment? No recurrence is expected. An unexpected result has been that my erratic blood pressure has stabilised and my shoulder pain has gone. I had been on blood pressure medication and having regular physiotherapy for my shoulder pain for a couple of years before the schwannoma was discovered.
Any other comments you would like to add: I feel like I have won the lottery. To a certain extent, luck was involved. However, I have learnt that you have to be your own advocate and not worry about being a 'difficult' patient. Surgeons are brilliant people but they are not infallible, especially when it comes to a low incidence condition such as a vagal schwannoma. Do your homework. Search PubMed for recently-published medical literature on your condition and, if possible, talk through the various options with people who have ‘lived experience’ of the aftermath of these treatments.
Patient 9
Male/Female: Male
Date/Year first diagnosed: May 2011
Age at diagnosis: 31
Symptoms leading up to diagnosis: None
How was diagnosis established: My wife had been reminding me to go get a physical as it had been a while. The morning of my appointment she noticed my neck was a little larger than usual. She said "your thyroid is large". She was recently diagnosed with Hashimotos Hypothyroidism and so I thought she was just exagerating and I promptly dismissed it. I went to the Dr. as scheduled. The physician identified me as relatively healthy (maybe a little overweight) but also pointed out my thyroid as being inflamed. I went home and ate my words. Later an Ultrasound revealed that my thyroid was in fact just fine but there was something else up in there. CT Scan revealed what was thought to be a Corotid Body Tumor. During the CT Guided Biopsy I was awake and when the Dr. put the needle in my neck it induced a severe cough reflex. My oxygen stats dropped severely and the procedure was halted. My neck was sore for days. They did get enough of a sample to send to pathology however and results reveiled that it was likely a Benign Schwannoma. The Surgeon told us it was a Vagal Schwannoma. I've been told it's pretty rare. It's like I won the lottery :-|
What was the size of the tumour at diagnosis and has it grown since?
7 cm by 4 cm
After diagnosis what further symptoms occurred? No symptoms.
What emotional feelings were you going through? Well this just sucks...oh well...let's just get it done and over with
What kind of support did you recieve? Loving wife, parents, family, friends. All wishing me well.
What type of doctor diagnosed you? Head & Neck Surgeon
What was the first initial diagnosis (what did they first think it was)? Corotid Body Tumor
What did your doctor say about your diagnosis? He said I'm fairly young and should bounce back well. While there is always a chance of finding cancerous cells post surgery he is very confident that it is benign.
Is your V.S. located in the upper or lower part of your head/neck/or elsewhere? Lower near my clavical
What options did your doctor give to you regarding treatments? Basically he suggested total removal and warned of the potential effects of vagal nerve damage. We asked for a second opinion of any kind, he stated that any other surgeon would likely give me the same story, we were confident in his abilities and didn't feel the need to hear from another surgeon. We did however want to know more about radiation options. From our research online and on this group we heard very good things about CyberKnife, etc. My surgeon was confident that Radiation Oncology would recomend surgery for my particular case but referred us anyway. A few weeks later we went to the Kaiser Permantente Radiation Oncology Head and Neck Tumor Board in Los Angeles where a panel of MDs examined me and then deliberated privately for a few hours. I was not the only case of the day but I'm fairly certain I was the only Schwannoma. Afterwards they pulled me into a private room where one of the panel members discussed the recommendation. It was determined that Radiation would cause too much damage to the surrounding tissues, limiting options for surgery later on. Also, since my biopsy showed no evidence of malignancy they didn't want to introduce the potential for cancerous cells later in life. They basically told me radiation would burn too many bridges and that surgery left me more options in the long run. Same thing my surgeon told me, but it was good to hear from someone other than him.
What treatment did you choose? Surgery
Why did you choose this treatment? Based on my surgeons recommendations and the same opinion from the Radiation Oncology department we decided to proceed as planned with surgery.
How has your treatment worked? Very well. The surgeon was able to remove all of the tumor. He was also able to leave a piece of nerve in tact. The nerve sheath is gone so the nerve is exposed and may or may not work. In my post-op appointment the surgeon put a scope down my nose to view the vocal chords. He said he can see some movement on the affected side which is a very good sign. Here's hoping it get's better every day
During your treatment, how did you feel? I wasn't really awake during treatment ;-)
After your treatment, how did you feel? After surgery I was pretty groggy. Once I was a little more awake I was able to drink some water but that hurt my throat quite a bit. Thin liquids hurt. Most likely from intibation and laryngeal nerve monitors down my throat. The first semi-solid food I was given was like heaven. The more viscous the better. After a week or so and my throat felt much better and ever since I've been eating and drinking whatever I want. I did aspirate twice while still in the hospital. Once with some jello and once with some watermelon. My incision didn't hurt at all at first. A little tightness later while healing but nothing too bad. I've been off pain meds for weeks. My voice is still very scratchy and breathy and sometimes I have a cough. Run out of gas when attempting long sentences.
What things did you need to do, follow-ups after your treatment? Drain removal. Post-Op examination. Speech therapy
What is the expected result of your treatment? Tumor be gone! possible issues for recovery include partial vocal paralysis, trouble swallowing, aspiration. Hoping none of the above actually happen but planning like they will.
Any other comments you would like to add: Interesting to see the recent influx of Vagal Schwannoma patients. Kudos to Rhonda for establishing an online forum for these things.
Patient 8
Male/Female: Female
Date/Year first diagnosed: April 2011
Age at diagnosis: 25
Symptoms leading up to diagnosis: Nothing specific to the tumor that I know of other than the mass itself.
How was diagnosis established: My internist started with ultrasound, then a head CT, then I was referred to an Otolaryngologist/head neck oncology surgeon who did a biopsy (all tests were inconclusive and abnormal) then they had to order a chest CT, finally an MRI confirmed the Vagal Schwannoma.
What was the size of the tumour at diagnosis and has it grown since? I was just diagnosed and I don't know the exact measurements but I heard them mention around 4 cm.
After diagnosis what further symptoms occurred? Tightness and soreness in my neck around the tumor, difficulty sleeping.
What emotional feelings were you going through?Lonliness, depression, anxiety, and frustration
What kind of support did you recieve? I have a supportive family but I don't have any family members nearby, but I am lucky to have wonderful and supportive friends. Plus I work in a medical school with some extremely supportive people who really try to take care of me.
What type of doctor diagnosed you? A radiologist suggested it and then it was confirmed by my otolaryngologist/oncology surgeon.
What was the first initial diagnosis (what did they first think it was)? Abnormal lymph node, then a tumor.
What did your doctor say about your diagnosis? I was told that VS is very rare and a complicated surgery would be required in order to remove it. Oh and quite a long list of possible issues I may have to deal with after the surgery.
Is your V.S. located in the upper or lower part of your head/neck/or elsewhere? Upper part of the right side of my neck, just underneath my jaw.
What options did your doctor give to you regarding treatments? Radiation and surgery. I was told watch and wait wasn't a good option because of the placement and size. I have seen a couple of surgeons and they have said that surgery is the best option for me since I am 25 and radiation at this point may not be effective.
What treatment did you choose? I'm going to have surgery, but I'm waiting on a few more consultations before it can be scheduled.
Why did you choose this treatment? I have basically been told it is my only option, and my research has made me more confident that it is the best choice for me. I don't want to risk having to deal with this again in a few years. I feel as though I'm too young to be dealing with this as it is.
How has your treatment worked? n/a
During your treatment, how did you feel? n/a
After your treatment, how did you feel? n/a
What things did you need to do, follow-ups after your treatment? n/a
What is the expected result of your treatment? Hopefully once the tumor is removed and I recover from surgery, I will be done with the ordeal and can move forward with my life.
Any other comments you would like to add: I'm really hoping for the best.
Patient 7
Male/Female: Female
Date/Year first diagnosed: July 2001
Age at diagnosis: 28
Symptoms leading up to diagnosis: My first Schwannoma diagnosed was on my face nerve (7th cranial nerve) on left side; my eye was constantly crying and had twitches constantly by this time. I went to an Optometrist and he noticedI had slight palsy. My neck lumps were not taken in to consideration at this time. I have pain that radiates up and down my neck, muscle weakness. The pain can sometimes be unbearable where it is like being electrocuted. I have Memory problems and disorientation.
How was diagnosis established: For my facial nerve Schwannoma they performed a MRI with contrast, and the same with my neck tumours.
What was the size of the tumour at diagnosis and has it grown since? Facial tumour was 1.5cm x 0.8 cm and it had grown to 2cm x 1cm at time of treatment in 2005. Neck tumour I have no idea on sizes or growth as they are clusters and one other is approx 2.5cm at this time.
After diagnosis what further symptoms occurred? My Palsy worsened and had dry eye could close my eye and left side of mouth didn’t move. My neck tumours are getting more painful more on a daily basis rather than just occasionally and weakness has increased also. Memory is shot and it seems to be getting worse.
What emotional feelings were you going through? I was first thinking great I am not a hypochondriac! I was really concerned about how the disfigurement and loss of functions were going to affect my future and my family. Then I determined to find out all I could on this condition, I was not going to let it beat me.
What kind of support did you receive?I have a wonderful family that got me through all of this.
What type of doctor diagnosed you? I had a Neurologist, Ent specialists.
What was the first initial diagnosis (what did they first think it was)? My facial nerve tumour was first thought it could be a blood clot, and for the neck tumours was told it was cat scratch disease.
What did your doctor say about your diagnosis? That I was too young to consider radiation that surgery was my only option. But my palsy was worsening faster than they liked and that the nerve transplant may not be successful, but my Neurologist told me to consider Gamma knife it was left to me to do my own research. My Neck tumours now that are a different story I still am waiting for someone to take my case. One doctor said he was referring me to someone else that was a year ago.
Is your V.S. located in the upper or lower part of your head/neck/or elsewhere? 2 tumours in the mid neck region behind the sternocleidomastoid muscle and lower neck have a cluster maybe 3 tumours just under collar bone. The facial tumour was in the bony canal near the temporal lobe.
What options did your doctor give to you regarding treatments? ENT doctor said surgery only because radiation there is a risk of developing brain cancer. My Neurologist told me consider Gamma knife as he was not confident on a nerve transplant taking.
What treatment did you choose? My neck tumours they still are not clear what nerve it is on and still waiting for a specialist. Gamma knife was the treatment for the facial nerve tumour.
Why did you choose this treatment? I was not comfortable with what the doctors considered a success with surgery. They remove the tumour and you live it was deemed a success. WHAT THE? What about my life after, oh no thanks! The aim for the Gamma Knife was to kill the tumour and hopefully it would shrink.
How has your treatment worked? My facial nerve tumour is all but gone. It has shrunk 90 percent. It is a super terrific out come. Still have MRIS to make sure all the tissue surrounds are fine.
During your treatment, how did you feel? Scared, wondering if I chose the right treatment, apprehensive if it will work. Because it takes such a long time to see the outcome I was could only wait, which is so hard. But ever so sure at the same time I had made the right decision to go with the gamma knife.
After your treatment, how did you feel? Apart from a splitting headache not really much different, the next day I went down to Bondi beach had some breakfast and walk along the beach. Just the flight home the following day was awful my head felt like it was going to explode.
What things did you need to do, follow-ups after your treatment? MRIs
What is the expected result of your treatment? To kill and destroy the tumour and hopefully the tumour would shrink enough to regain facial movement.
Any other comments you would like to add: I still have no idea what nerves my neck ones are on, I am assuming from my symptoms it is the vagal nerve. But I am confident that after my treatment of my facial nerve tumour that these tumours are not invincible. Draw strength from your loved ones and from educating yourself. You are the best judge for yourself. If you are not comfortable with a doctor or with a certain treatment you must listen to your intuition. At the end of the day you are the one who feels the pain and does the hard work to regain your life and health, so you must also base your choices on your lifestyle. I am a huge advocate for Gamma knife treatment as I have 5 kids to care for and surgery was going to need 2 years rehabilitation which was not an option for me. But I am so very happy with the result. Now I will deal with my neck tumours in the same way learn listen and choose my path with what I feel will be the best outcome for me. And most important thing is to laugh even if it starts a coughing fit. I have made fun of this since I found out, I have said to doctors things like “do you know of a good circus I get a job in side show alley.” Or “The tumour made me do that” or other nonsense things because after all being happy brings healing. My favourite saying is I was born in the shallow end of the gene pool. Be strong and be sure.
Patient 6
Male/Female: Male
Date/Year first diagnosed: 15 Feb 2006
Age at diagnosis: 57
Symptoms leading up to diagnosis: Upper resp. infection (unrelated)
How was diagnosis established: Initial US/confirmed by biopsy
What was the size of the tumour at diagnosis and has it grown since? 3.5x3.4x2.8 ---the bugger’s dead tnx to CK
After diagnosis what further symptoms occurred? None
What emotional feelings were you going through? Why Me syndrome - panic
What kind of support did you recieve? Initially None from medical community…great family support
What type of doctor diagnosed you? Radiation Oncologist specialist
What was the first initial diagnosis (what did they first think it was)? Lymph node/thyroid mass
What did your doctor say about your diagnosis? Surgery ASAP
Is your V.S. located in the upper or lower part of your head/neck/or elsewhere? Lower left neck
What options did your doctor give to you regarding treatments? No options - surgery
What treatment did you choose? I was own patient advocate found CK
Why did you choose this treatment? Figured it was my life and I was going to control the issue
How has your treatment worked? 5 years post and not looking back…not looking at the roots, either!
During your treatment, how did you feel? Fine
After your treatment, how did you feel? Slightly tired, initial worst sore throat I ever had
What things did you need to do, follow-ups after your treatment? Relax
What is the expected result of your treatment? Death to the little bugger
Any other comments you would like to add: CK all the way…most pleased with it. I have the best doctor, Nate Kaufman, any one could have.
Patient 5
Male/Female: Female
Date/Year first diagnosed: 2011
Age at diagnosis: 38
Symptoms leading up to diagnosis: large lump discovered on my neck under my jaw.
How was diagnosis established: Ultrasound, Mri, CT scan, Palpitation - all four plus 4 biopsies
After diagnosis what further symptoms occurred? none
What emotional feelings were you going through? A big WTF as all my tests were coming up negative – blood was good, chest xray was good,
What kind of support did you recieve? So far really good…I have yet to tell my extended family and friends
What type of doctor diagnosed you? Otorhinolaryngologist
What was the first initial diagnosis (what did they first think it was)? It was a toss up between schwannoma and paraganglioma
What did your doctor say about your diagnosis? Until the MRI results were confirmed he was still on the fence about what it was. He was very adamant that it didn’t look like cancer.
Is your V.S. located in the upper or lower part of your head/neck/or elsewhere? Upper neck
What options did your doctor give to you regarding treatments? surgery
What treatment did you choose? .. Surgery
Why did you choose this treatment? Didn’t know there was any other kind of treatment and my doctor was very confident this was the best way to go.
How has your treatment worked? I had full excision of the mass
During your treatment, how did you feel? It was surgery so I didn’t really feel anything. My pain has been very minimal
After your treatment, how did you feel? I am still very swollen but the effects of removal so far have been minimal. I have lost some sensation on the side of my tongue but its on a part that I don’t consciously use. My face is still numb but again that could be due to the swelling. Long term effects won’t be known until I am completely healed.
What things did you need to do, follow-ups after your treatment? Take it easy for now. My follow up is coming up so I will know then if anything more needs to be done.
What is the expected result of your treatment? My voice could be affected but they won’t know until after surgery
Any other comments you would like to add: My surgery date was June 2/11. Once the surgery began the doctor discovered that the vagal nerve was actually stretched right over the mass and not attached as first thought. From what I understand the mass was attached to a smaller nerve in the back of my neck. To this point surgery was a complete success. My recovery has been very quick and a lot less painful than we all predicted. I went in for surgery at 11:30, back in my room after recovery by 4 PM and sent home at 6:45 PM the next day (June 3/11) I am now recovering at home with instructions not to do any heavy lifting beyond 5 lbs and no housework at all. For pain I have chosen extra strength Tylenol as my pain is very minimal. Its more of an ache than anything more
Update June 9/11 - Had follow up appointment with doctor. From the sides affects I am suffering, the doctor believes that my schwannoma had attached itself to my sympathetic trunk nerve. I will be seeing him again in 6 weeks to confirm that this was the nerve affected. I currently suffer from numbness on my face, a droopy eyelid and my pupil is now smaller than the other. My vagal nerve was not touched and has suffered no ill affects of the tumor.
Patient 4
Male/Female: Female
Date/Year first diagnosed: June 2010
Age at diagnosis: 49
Symptoms leading up to diagnosis: Acute pain on left side of face
How was diagnosis established: MRI & CT scans
After diagnosis what further symptoms occurred? Left vocal cord palsy & left tongue atrophy so voice volume and clarity not perfect.
What emotional feelings were you going through? Strangely relief as was told I could possibly have throat cancer.
What kind of support did you recieve? Have had speech/swallow/physio therapy (accessory nerve also affected)
What type of doctor diagnosed you? ENT
What was the first initial diagnosis (what did they first think it was)? Throat cancer
What did your doctor say about your diagnosis? The ENT docs where I was diagnosed referred me to Neuro unit at another hospital who specialise. They have told me just about everything there is to know.
Is your V.S. located in the upper or lower part of your head/neck/or elsewhere? Skull-base
What options did your doctor give to you regarding treatments? Surgery to remove/de-bulk followed by period of waiting to see what happens then possible thyroplasty to improve voice quality.
What treatment did you choose? Surgery
Why did you choose this treatment? I was never given a choice it was always just surgery.
How has your treatment worked? Will advise after op next week.
During your treatment, how did you feel?
After your treatment, how did you feel?
What things did you need to do, follow-ups after your treatment?
What is the expected result of your treatment?
Any other comments you would like to add:
Patient 3
Male/Female: Male (I’m filling this out for my husband)
Date/Year first diagnosed: 11/4/2010
Age at diagnosis: 35
Symptoms leading up to diagnosis: ear ringing, stuffiness in ear, hearing loss in affected side
How was diagnosis established: MRI found tumor but then visited multiple Drs before getting an actual diagnosis. The neurosurgeon that did the surgery actually made the diagnosis
After diagnosis what further symptoms occurred? No new symptoms, slight ear ringing remains however surgeon said it could still improve, hearing back to normal
What emotional feelings were you going through? Terribly scared when first found out there was a brain tumor present, at first was told it was probably an acoustic neuroma, read scary stuff on the internet about that, then went to an ENT who couldn’t clearly diagnose. We were told it was probably benign, but didn’t like the probably part! Then went to several neurosurgeons, which was scary when they weren’t sure what type of tumor it was. Knew the neurosurgeon that operated was “the one”, we felt much better after meeting him.
What kind of support did you recieve? None, others made us feel worse when talking about it so we stopped discussing it with others. Stopped reading on the internet as well. I just came back to your site now that he is OK, couldn’t read it before.
What type of doctor diagnosed you? Neurosurgeon
What was the first initial diagnosis (what did they first think it was)? I already mentioned this but acoustic neuroma
What did your doctor say about your diagnosis? Everyone kept saying he was too young to be facing something like this until we met “the neurosurgeon”.
What options did your doctor give to you regarding treatments? He was told he was too young for radiation, long-term effects weren’t known. Everyone said he would need surgery.
What treatment did you choose? Surgery (debulking)
Why did you choose this treatment? Not really given a choice but did get multiple opinions before choosing surgeon.
How has your treatment worked? Wonderfully! The surgeon was great and had lots of experience. He was very reassuring that there wouldn’t be any major complications. Things turned out better than we could have ever wanted.
During your treatment, how did you feel? He recuperated fairly quickly. Surgery was on a Tuesday and he came home on Friday. Thought he’d have balance problems but had none. Could have had swallowing problems but had none. He was out of work for 8 weeks post-op.
After your treatment, how did you feel? See above question, during treatment he felt nothing he was under anesthesia.
What things did you need to do, follow-ups after your treatment? He had to follow-up with the Dr in about 3 weeks after surgery and then again about 6 weeks after. He will have another MRI in Aug just to check everything. If it grows again it will be very slow, as these tumors are always very slow growing. If anything he may need radiation no sooner than 15 years from now.
What is the expected result of your treatment? No surgery ever again!
Patient 2 - Rhonda Edwards (permitted to use name)
Male/Female: female
Date/Year first diagnosed: April 2009 (Easter Weekend, Happy 2nd Anniversary to me this month!)
Age at diagnosis: 43 yrs old
Symptoms leading up to diagnosis: Ear stuffiness, severe knife jabbing feeling on right side behind ear and into head and which also felt like electric shocks, swollen feeling inside which pushed against airway when swallowing, vertigo, hoarse voice. I had been experiencing a hoarse throat since 2002 and had laser surgery on vocal cords because the surgeon thought it would help my voice.
How was diagnosis established: First I had palpitations which found swollen lymph nodes, that sent me to get an ultrasound which found a mass, then they did a CT scan which found the mass again, they diagnosed this as a Carotid Body Tumour, then they did an MRI which confirmed Vagal Schwannoma..
What was the size of the tumour at diagnosis and has it grown since? It was 5.6 cm X 4 cm but grew to 7.1 cm in length within a year.
After diagnosis what further symptoms occurred? Pressure in my right ear as if being thrown down a mountain, breathing began to get laboured with pressure against the airway (my eyes would water and begin to bulge), fatigue, memory got worse!, concentration went down the drain
What emotional feelings were you going through? I was very upset the first 15 minutes I heard the news on the phone, then I realized it was better me than someone I loved. I did have bouts of wanting it out of me. I felt very ugly and felt as if I had the ugliest morphed face on the right side. All psychological.
What kind of support did you recieve? I received amazing support both from family, friends and clients of mine. That is what mainly got me through any of this with such a positive attitude.
What type of doctor diagnosed you? I was first diagnosed by an ENT with some sort of mass. He sent me to a neurologist and he confirmed vagal schwannoma.
What was the first initial diagnosis (what did they first think it was)? At first they thought it was a cancerous mass(carotid body tumour) as this is what the CT scan showed and the prognosis did not sound too good. It was cleared up quickly to be a V.S.
What did your doctor say about your diagnosis? He could not do surgery because of the position and size of it (4.6 cm by 4.0 cm) at the time. He said that in 8-10 yrs I would HAVE to have it out. My symptoms would be so severe by that time it would be the time to remove it. He said after surgery I would be on a feeding tube and would not be able to talk again. Radiation was not an option because Gamma Knife could not be performed on a tumour of that size in the head. Quality of life vs quantity of life was his motto.
Is your V.S. located in the upper or lower part of your head/neck/or elsewhere? It is located high up in my skull base growing up through my jugular foramen.
What options did your doctor give to you regarding treatments? No options but the watch and wait. Once I approached them about the new cyberknife radiation machine coming to Ontario, they said that surgery, or their own Gamma knife radiation was the only option for me. When told previous that it was NO option for me I knew they were not acting in my best interest. They would not even refer me to the Ottawa Hospital for the new treatment. I had to get myself in there. I thank Dr. Sinclair to this day for taking me on as a patient.
What treatment did you choose? I choose CyberKnife radiation. (Dec 2010)
Why did you choose this treatment? My age was not a problem. The C.K. machine is most accurate with less days of radiation. The tumour had grown approx. 20 mm in just over a year. They are supposed to be slow growing but instead, mine was aggressively growing.
How has your treatment worked? I am not sure how my treatment has worked yet as it has only been 4 months. I have an MRI booked in June. I will find out more then. It is still even too soon and there may still be swelling which will make the tumour look bigger. It takes approx. 3 yrs to get the full effect of the radiation.
During your treatment, how did you feel? During the treatments while getting the radiation it was no problem. A mask was fitted for my face and secured down onto a table. You cannot be too claustrophobic or else you will have to overcome a huge obstacle. In the evening after the first treatment, I was very sick with a splitting headache and vomiting. My brain had swelled. This was reduced with steroids. Otherwise, all went smoothly.
After your treatment, how did you feel? After treatment I was very quiet and in my own world. I had returned to work 2 days after my radiation treatments. I was still vomiting for about 1 ½ weeks daily. I had some patches of hair fall out which have grown back in and are about 1 ½ inches long now. My throat was VERY sore about 2 weeks after and this lasted only for about 5 days. I have up and down days where I am totally exhausted. In all, every thing I have described above was short lived and expected.
What things did you need to do, follow-ups after your treatment? No follow-ups. I was a bit confused by this part as I thought there would be some team support afterwards. Most of the literature I had read was from the States and there they do 2-3 week follow-up appointments. My next appt was made to be 6 ½ months after the CK.
What is the expected result of your treatment? Expected result is the tumour should die. 95% of them die. 30% of them shrink down. I just look forward to having this thing not grow anymore.
Any other comments you would like to add: Do your homework. Educate yourselves. Don’t just listen to one treatment option. With this site and the Facebook site I have met many people around the world with Vagal Schwannomas. Every story is similar until you get to the doctors. Then it all changes with the treatments and ideas.
Patient 1 -
Jen Hartmann (permitted to use name)
Male/Female: Female
Date/Year first diagnosed: November 2010
Age at diagnosis: 39
Symptoms leading up to diagnosis: In January 2010 I had a series of excruciating headaches but assumed they were due to my pregnancy at the time. They ended mid-February and did not occur again until November 2010. At that time, I convinced my general practitioner that something was wrong. She agreed to order an MRI just to make sure. I was otherwise perfectly healthy and very physically fit.
How was diagnosis established: MRI
After diagnosis what further symptoms occurred? The tumor was caught so early I had no symptoms. Every neurologist I met with assured me the headaches were completely unrelated.
What emotional feelings were you going through? I was completely and utterly shocked. My general practitioner very matter-of-factly told me “you have a brain tumor” and arranged for me to meet with a local neurosurgeon the following week. I spent the next four days agonizing over the MRI report…trying to make sense of it….researching online, etc. I had no idea you could live with a brain tumor until this happened to me.
What kind of support did you recieve? My husband is a saint. He was incredibly supportive, positive and encouraging. I have also been backed by an entire community of friends and family members including a prayer network that stretched literally around the world. This website and the Facebook VS community were a Godsend!!
What type of doctor diagnosed you? My family practitioner, the Radiologist at our local hospital and local neurosurgeon initially diagnosed me.
What was the first initial diagnosis (what did they first think it was)? I was told I likely had a small (16mm) but benign brain tumor called a meningioma. I was advised to not worry – these are slow growing tumors that rarely cause any issues. The neurosurgeon recommended I get a follow up MRI in 6 months and yearly check-ups after that. After celebrating a bit that night, my husband and I woke up the next day and decided to get a second opinion.
We made an appointment with the University of Iowa Hospital in Iowa City where we met with the head of the neurosurgery department and the lead surgeon for skull base tumors. They disagreed with the initial diagnosis and diagnosed me with what was likely a Vagal Schwanomma. They recommended surgery.
With two opinions in hand we decided to get a THIRD opinion at the Mayo Clinic in Rochester, MN. Mayo is rated second in the U.S. for neurosurgery so we were confident in their counsel. We met with a round of neurologists including the head of their skull base surgery group, Dr. Link. They confirmed that I did in fact have a Vagal Schwanomma.
What did your doctor say about your diagnosis? Dr. Link was very encouraging and had successful experience removing Vagal Schwanommas. He considered surgery a cure as the return rate is very low when the tumor is completely removed.
What options did your doctor give to you regarding treatments? Dr. Link told us he was 51% leaning towards surgery and 49% leaning towards Gamma Knife Radiation. He did not believe watching and waiting would be of any benefit given how small it was. At 16 mm I had more options at my disposal. If I waited, GKR may not be an option and/or I may have irrevocable side effects if the tumor started damaging the nerve on its own.
What treatment did you choose? We chose surgery.
Why did you choose this treatment? I had the luxury of making this decision over 3 months and had the opportunity to meet with 6 neurologists, a speech and language therapist and individuals that had chosen various options. We ultimately chose surgery for the following reasons: (1) I am young and could more readily overcome any of the issues surgery may cause now vs. waiting until the tumor grew. (2) The tumor was still small enough to limit damage to the nerve during removal (3) Gamma Knife Radiation is a one-time shot. You can only get it one time and while the results equal that of a removal, there is still a small chance a cell could live and the tumor could grow back. While that's true for surgery, GKR makes any future surgery difficult and in a very small percentage of cases has actually turned benign cells malignant. (confirmed by both Mayo and Iowa City (4) My husband and I are trying to conceive and there is some research that shows tumor cells can grow during pregnancy. We didn’t want to take that chance. (5) I wanted this tumor GONE.
How has your treatment worked? My surgery was March 10, 2011. 6 weeks later I am thrilled with the results. Dr. Link believes the tumor was removed entirely. My first follow up MRI will be at the 12 week mark and then I’ll return in 2 years. If everything is clear, no follow up is needed and I will be considered CURED. Because we caught it so early, the tumor had just started growing up and out from the nerve – like a mushroom – and had not wrapped around the nerve. This made it much easier to remove and limited any nerve damage. I went into the surgery expecting to have limited or no use of my left vocal cord when I came out of surgery. That did not happen! I do however, have issues swallowing solid foods and need to follow each bite with something to “chase” it down. (I can eat oatmeal, fruit, soup, cereal, chocolate, etc normally - but everything else requires me to drink liquid to swallow). I will start therapy next month to help but overall, my daily life is not impacted. In some cases, the nerve has been known to start working fully again or the other nerve can compensate. Only time will tell!
During your treatment, how did you feel? My surgery lasted just 3.5 hours and I spent one night in the ICU, and 2 days in the hospital. I was on pain meds for the first 10 days and was considerably uncomfortable and tired but had plenty of help at home which is a MUST. Each day after that was all uphill and I continue to gain strength, energy and momentum.
After your treatment, how did you feel? Brain surgery is rough. No doubt about it. But I’d say the first two weeks are really the roughest. It’s absolutely amazing overall just how quickly your body heals and how soon you’re out and about. 6 weeks after the surgery I’m living without much restriction. I’ll be off work for a bit longer and have been advised not to exercise or lift anything over 10 pounds until the 12 week mark.
What things did you need to do, follow-ups after your treatment? I met with my general practitioner to have the staples removed (all 27 of them!) and will meet with the Otolaryngology department at Iowa City to evaluate the swallowing issues I’m having. At the 3 month mark, I’ll return to Mayo to meet with neurologists, test my hearing (it’s absolutely fine), get an MRI and meet with Dr. Link.
What is the expected result of your treatment? As mentioned, a clear MRI at 3 months and then at 2 years is considered a cure by Mayo.
Any other comments you would like to add?Trust your heart. Follow your instincts. Get multiple opinions if time allows and by all means, talk and connect to everyone you can who has been in your shoes. Doctors do not know everything but be sure to talk to the doctors who likely know the most! Know that this is a very personal decision….and there is truly no WRONG decision…only the best decision for you and your family.
Male/Female: Female
Date/Year first diagnosed: sep 2007
Age at diagnosis: 27yrs [31 now]
Symptoms leading up to diagnosis: Jabbing pain in left side of neck and ear from age 15 {ignored}, approximately ten ‘cafe au lait’ spots looking like large pale moles appeared on chest and back aged 21, increasing to approx 50 by age 27, but were unrecognised by 4 doctors over the years and ignored. After a car crash aged 23, a whiplash injury masked the developing pain in my neck and left shoulder, which gradually increased to such a degree that it made my neck immobile, and constantly aching with jabs and stabs of pain that radiated down from my ear, through my neck and then through my left shoulder. The best way i can describe the pain is like having an elastic band in the neck that was pulled, twisted, and torturously ‘twanged’ with resonating snaps stings and dull aches. These pains were coming regularly from every 10mins, to every 10secs, sometimes with an hour or 3’s rest. I could not sit or lay comfortably for 3yrs, which affected sleep and mood very much, and i was increasingly getting acid reflux, severe headaches, specifically behind my left eye, loss of appetite, and periods of nervous anxiety in which my whole nerves seemed on edge and tremor-like, which doctors put down to feeling ‘under the weather’ since losing my spleen in the before mentioned car crash. I had also lost most of my hearing in my left ear and could not bare that side of my head to be touched. Despite physiotherapy for suspected and prolonged whiplash, and repeated visits to my doctor to ask for a more thorough investigation of this pain, it wasn’t until looking at my recurring sore throat in the mirror, i was shocked to finally notice a large bulbous mass on the left side in the back of my throat just above the tonsils, compressing and displacing the soft palate down towards my tongue.
How was diagnosis established: On first visit to show my doctor, i was sent home with antibiotics and told not to worry, he even hinted at hypochondria [!]....3 months later, i worked up the courage to go back and asked to see another doctor, who immediately called in five more doctors to view the obvious mass before sending me straight to the ENT as an emergency just 2 hours later. At the ENT, a small camera inserted down my throat revealed what was described to me as an unusually large lesion in the pararpharengeal space that continued down my throat to the voice box. I was kept in overnight in preparation for the next days Ultrasound, CT, and MRi, and i was ‘put under’ for a biopsy of the mass, from within my mouth. Results revealed a tumour that had been growing for so long, that it had compressed most of my left ear canal, and extended into many areas on the left side, including the skull base which was so affecting my shoulder, also pressing on the brain stem, up against the back of my eye, and down the side of my throat. Original suspicions were of a number of neurofibromas, but biopsy suggested a unilateral schwannoma growing outwards to any available space, hence it seeming like 3. After the tumour was removed, it was confirmed as a schwannoma of the vagus nerve, although one doctor mentioned a smaller neurofibroma that had influenced the ‘cafe au lait’ spots, which after 9yrs, had rapidly started to fade only 4wks after the first operation.
What was the size of the tumour at diagnosis and has it grown since? I was told the tumour was the size of approximately 3 oranges, and was told repeatedly that it was amazing they hadn’t been found before now due to the discomfort i was in. Since the first removal, they have only reached approx 10cm x 4cm x 3cm before being removed again.
After diagnosis what further symptoms occurred? Well i have now had five operations in 4 yrs to remove the tumour, but as of yet it keeps returning. The good news is that my neck movement and hearing were instantly returned after the first op, I felt TEN YEARS younger :D and all compression pains disappeared until the tumour was becoming large again a yr or so later. Heart burn got a little worse for a while, still have little or no appetite except for chocolate lol, and i still get the jabbing and stabbing pains regularly that can become embarrassing in public places if you cry out loud, but at least i can now get out of bed with a smile on my face. The down side, is that recovering from some of the operations was harder than expected, including an infection and abscess after one op that required re-opening the scar on my neck, very sore and stiff, and it’s a scary thing trying to eat but choking mostly, for a wk or 2, and six hrs in surgery can really drain you on top of weight loss and worry. I have vocal cord paralysis down one side, and couldn’t make a lot of sound at first, often feeling faint if i tried too hard. My voice is almost back to normal now but my singing days are over (: also, nerves at the base of my tongue were damaged, and so my tongue is somewhat swollen and deformed on one side, but you learn to adapt! I now also have Horners Syndrome, a weakening of the nerves to the left eye, resulting in eye-lid droop, non-reflexive pupil, and under-use of that eye, as well as headaches and lack of sweating to the skin on left side of head. I also have First Bite Syndrome, very complicated and there’s been little research on it, but it’s a horrendous instant pain in left side salivary glands on initial smell or taste of food or drink, as if you’re salivary glands are squirting acid poison into your head jaw and teeth. Fruits and strong tastes are greatly avoided....although even water can send you to the worst heights of pain sometimes. The pain is immense, lasts for up to ten seconds and then subsides just as quickly, but is present for up to the first ten mouthfuls before reaching a level where you can finally bare to chance chewing as normal. And it starts again at your next meal or snack from within an hour. My surgeon knew nothing of first-bite syndrome and rubbished my pain until i eventually found internet evidence to explain it. Apparently its quite common with vagal operations, yet he’d never came across it before. The main point, is that although treatments are being investigated to little or no success, the pain is manageable. With time, you learn to introduce food slowly to your mouth, and lessen the initial impact. And that way you can still eat what you like, you just have to be patient. But there are still times when walking my dog or heading through town, a slight whiff of something tasty in the air can cripple me with pain for a few long seconds. You just have to be careful!
What emotional feelings were you going through?, Mostly annoyance with doctors for not giving me any credit for knowledge of my own pain patterns and developments over so many years, and between operations.... certainly helped channel my fear i think :D especially when i was always proved right lol.
What kind of support did you recieve? Just medical; info, choices etc. Good family support, though they were probably more scared for me than i was.
What type of doctor diagnosed you? ENT surgeon plus his band of merry men, and a neurologist eventually.
What was the first initial diagnosis (what did they first think it was)? Neurofibromatosis [NF]
What did your doctor say about your diagnosis? Very positive about probable outcome...That it was a spontaneous genetic mutation causing a singular tumour, not NF.
Is your V.S. located in the upper or lower part of your head/neck/or elsewhere? Both! Currently travelling further up to the brain stem, and again down the throat and base of skull.
What options did your doctor give to you regarding treatments? surgery...no other options explained due to size and compression on other structures.
What treatment did you choose? Surgery, although now i am researching the CyberKnife thanks to this amazing site.
Why did you choose this treatment? See “treatment options” section
How has your treatment worked? It’s an inconvenience having Horners, and First-bite Syndrome, and the tumour is still returning, but i have my life back,. Its still worrying, knowing more operations will be needed, especially since the last operation the doctors were thinking of splitting my jaw to allow them to access the brain stem more easily....but the Doctors and Surgeons are doing what they can, and in the last 4yrs, i can’t thank them enough for the improvements their first operation brought me so immediately.
During your treatment, how did you feel? Scared...Just wanted to get on with it.
After your treatment, how did you feel? 1st operation- so relieved by getting movement and hearing back! All other ops....Worried and disappointed.
What things did you need to do, follow-ups after your treatment? Tongue and Speech therapist, only 8 sessions needed. Checked every six months with MRi, operation every year or so, so far.
What is the expected result of your treatment? Unsure really, awaiting scan results and discussion now as ignored the tumour for 8months until i finished my final year at Uni, just last month. In myself, i already know the tumour is back, i can see it, and feel it, and unfortunately i can now also feel all the same pains starting to manifest on the Right side too. Hopefully one of the operations will work eventually and it won’t return.... but if it does, then so be it :D we all know, there are a lot worse things out there than a benign tumour! ........Take care everyone x
Patient 14
Male/Female: Male
Date/Year first diagnosed: April 2011
Age at diagnosis: 12 years old
Symptoms leading up to diagnosis: headaches with vomitting
How was diagnosis established: CT Scan for mass and fluid on brain, MRI for location , and Surgical Biopsy for actual diagnosis.
What was the size of the tumour at diagnosis and has it grown since? Was not given measurements, Dr. said it was about the size of a marble.
After diagnosis what further symptoms occurred? Underwent biopsy surgery immediately after finding tumor. After surgery for biopsy, Jordan had some issues with numbness of the top of his legs, his walking was unsteady (however he could ride a bike like no other), and depth perception was a little off.
What emotional feelings were you going through? Jordan was as solid as a brick house when it came to emotions about his situation. He did not sulk or pout around about having a brain tumor, however if he was asked to do chores, even the smallest task, he made sure everyone knew he had a tumor. He had a great sense of humor about it and made jokes frequently. I'm not going to say it didn't bother him, because the morning of his surgery he was very afraid, that was the first time I had seen him cry about it. I on the other hand (his mother) was not as brave as Jordan, but I did not show it unless alone. I was scared to death. No parent wants to hear their child has a tumor. I am a hairdresser who has a repeat clientele, so I am close with my customers, each day I worked Jordans tumor was a topic of conversation many times over. Each feeling was different, but it definitely helped me as a mother cope with the situation hearing other peoples stories and they were all positive.
What kind of support did you recieve? Jordan, and our family have so much support coming from every direction. He is the oldest brother to 2 brothers and 1 sister, they never treated him any different than before he was diagnosed (they still fought with him equally as before). On the day of his first surgery we had 15 family members show up at the hospital, 9 at his second, and tons of visitors in between and many more to come. Jordan has also been accepted to receive a wish through the Make A Wish program which is an amazing organization that definitely keeps him motivated by supporting his speedy recovery with the reward of a granted wish. He is ecstatic about that. There will also be a benefit for Jordan in July to raise money since I am the sole provider for the family and am taking off of work for several weeks to be with my baby boy. So needless to say, I bellieve our support system is the best we could ever ask for. Oh, and I can'[t forget the countless teenage girls on his facebook that swoons over him daily, hes loving that.
What type of doctor diagnosed you? Pediatric Neurosurgeon
What was the first initial diagnosis (what did they first think it was)? It was first just diagnosed as a schwannoma, unsure of what nerve the tumor was originating from. It wasn't until just yesterday after his second surgery was it confirmed to be a vagal schwannoma.
What did your doctor say about your diagnosis? He felt very positive at all times. Although it is extremely uncommon in children, Jordans doctor was very confident that he, with his team of neurosurgeons and specialists (which he formed from children’s hospital and a regular hospital) could successfully get rid of this tumor with minimal damage.
Is your V.S. located in the upper or lower part of your head/neck/or elsewhere? At the base of the brainstem, wrapped around the nerve
What options did your doctor give to you regarding treatments? this was the option he strongly recommended, he suggested radiation alone could do more damage than good. He will do one strong dose of radiation aka gamma knife treatment within the month to destroy the 1% still attached to the nerve
What treatment did you choose: Jordan is being treated at the #5 Children's hospital in the U.S. with the best Neurosurgeons from Childrens's and a sister neighboring hospital (since they deal with adults with schwannomas), so we agreed to surgery and gamma knife radiation.
Why did you choose this treatment? His team of doctors are the best of the best, they met several times and about 15 of them voted that this was the best treatment plan for Jordan. I wanted him to be safe and healthy, and I trusted these doctors to do what they promised they could do, they showed the utmost confidence and I appreciate that.
During your treatment, how did you feel? Jordan is still going through his treatment, both surgeries are over, however this is only the day after his second surgery so he is still recovering, but we expect great things.
After your treatment, how did you feel? na
What things did you need to do, follow-ups after your treatment? na
What is the expected result of your treatment? complete removal of tumor
Any other comments you would like to add: As a parent, this has been a very humbling experience for me. No one can ever know what it is like to be told that your child has a brain tumor unless they have been there. Nor can they know the pain you feel when you as a parent can't make it go away, or make promises that they will be just fine when you don't even know for sure. Faith in God and faith in Jordans doctors has got me where we are today. I have said prayer after prayer, begged and pleaded with God and asked every question I could think of, just to have peace. But the satisfaction of sitting right here by my son, knowing he is going to be okay now is the very best gift a parent could ever receive. Jordan should be inspiration to all diagnosed, he is truly an angel sent from above. I have never met a real hero, until now.
Patient 13
Male/Female: Female
Date/Year first diagnosed: September 2006
Age at diagnosis: 40
Symptoms leading up to diagnosis: felt like my throat was closing u,p sever swallowing difficulty and pain in my tongue. Lost several pounds due to lack of ability to swallow without choking (Very scarry)!!!! Had lots of headaches but did not link them with the tumor until recently. Oh and constant tickle in throat with cough all day and mostly during meals as I choke on food stuck in my throat. Weak voice ( Could not yell at my husband and kids). BUMMER!
How was diagnosis established: MRI after being ref. To Neurologist by my ENT (several visit to him to try different medications and so on)
What was the size of the tumor at diagnosis and has it grown since? Small but severe damage (4cm x 1.6) My tumor involves 9-12 cranial nerves. Between my carotid and Jugular BAD LOCATION FOR A GROWTH!
After diagnosis what further symptoms occurred? Slow growing, treatment with gamma Knife at the mayio Clinic in Rochester Minnesota within a few weeks from the time I had all my MRI’s done AGAIN at Mayo since they want all their own records..very thorough!
What emotional feelings were you going through? Scared and alone (especially at the dinner table after everyone else is done & gone and there I sit alone for another 20 min or so to finish my meal)
What kind of support did you recieve? Lots from husband, friends and family
What type of doctor diagnosed you?: Neurologist who then sent me to a Neuro surgeon.. from there I was so afraid I called my brother in law who works at the Mayo Clinic and he hooked my up with the absolute best Neurology group ever!!!!!
What was the first initial diagnosis (what did they first think it was)? ENT treated me for acid reflex for about two weeks and then I can’t remember what else he might have thought..I was sobbing in his office the day he mentioned MRI and Neurologist ....WTF is wrong with me I said!!!! I actually said Hell but whatever!
What did your doctor say about your diagnosis? SURGERY NOT AN OPTION..I would be on a feeding tube if they tried to remove the tumor ,but Gamma Knife is very successful ,the tumor essentially will die and stop growing but of course they have no idea how my recovery will go as far as regaining my swallowing or what other issues the tumor has caused. The Gamma Knife Radiation DOES NOT DAMMAGE ANY SURROUNDING TISSUE he assured me! However now 5 years later I have a lump under my right ear that hurts and my neck and right side of my head feels like its being tugged like a rubber band..Cluster headaches pain in my neck my ear and throat hurts...Muscle spasms in my neck muscle. Pretty much same as everyone else. Cannot wear a ponytail headband and now my sunglasses even rub on the nerves and cause a headache ARGH!!!!!
Is your V.S. located in the upper or lower part of your head/neck/or elsewhere? Base of the skull between carotid artery and Jugular foramen.
What options did your doctor give to you regarding treatments? Gamma Knife ( or if I wanted to do the Cyber Knife I could do that but again I have access to the Mayo Clinic so Gamma Knife was the way to go!) I was SCARED!
What treatment did you choose? Surgery, watch & wait, radiation, herbal ect..NA
Why did you choose this treatment? NA
How has your treatment worked? Have had improvement with swallowing however I feel as though most of the improvement is from overcompensation of other muscles getting stronger because they are working harder than ever to force the food down! My tongue atrophy is almost gone (Very surprised and impressed I might say ) Water still even goes down slow,,I can’t tell you how badly I miss chugging a glass of water when I’m really thirsty.....I have trouble, I cannot tilt my head back while swallowing...I choke!
During your treatment, how did you feel? Just fine
After your treatment, how did you feel? Just fine
What things did you need to do, follow-ups after your treatment? MRI’s every year for five years
What is the expected result of your treatment? Good
Any other comments you would like to add: I am having new symptoms in the last 3 months I now have a lump under my right ear, i have never had outward visible symptoms that i could feel with my hands. Nor did my neck hurt to the touch until recently. My scalp is getting very tender and the headaches are getting more constant..My ear and throat also hurt. MY BIG QUESTION TO ALL OF YOU OUT THERE IS ; ARE ANY OF YOU TAKING ANY NEROLOGICIAL PAIN RELEIVEING MEDS???? AND HAVE YOU EVER HAD A PHYSICAL THERAPYST DO ANY TYPE OF MASSAGE ON YOUR NECK TO RELIEVE THE TENSION AND PAIN??? I AM STARTING A SERIES WITH A PT NEXT WEEK AND WOULD LOVE TO HEAR HOW YOU ARE COPING WITH THE PAIN...
Patient 12
Male/Female: Female
Date/Year first diagnosed: February 2011
Age at diagnosis: 56
Symptoms leading up to diagnosis: Small lump that had grown from the size of a pea to much larger in 6 months
How was diagnosis established: Ultrasound with needle aspiration, exploratory operation, then MRI
What was the size of the tumour at diagnosis and has it grown since? 5x2x1.5 think it has grown again but don’t know if mind playing tricks!
After diagnosis what further symptoms occurred? Jabbing ear pain, but has since stopped, slight cough and feeling of something stuck in throat. Also slight dizziness if move and change direction too fast.
What emotional feelings were you going through? Relief as GP thought might be thyroid cancer, so to find out it was benign, allbeit tricky to deal with was good news.
What kind of support did you recieve? Initially told no one until I had to go in for operation, had lots of family for Xmas and didn’t want anyone to worry until they had to. Since they have known, they have all been great.
What type of doctor diagnosed you? Local Ent, Head and neck surgeon Otorhinolarygology, then referred to Professor of Otolaryngology, Guy’s London
What was the first initial diagnosis (what did they first think it was)? Unsure although I get the feeling that my initial surgeon knew it was something unusual, then after op he diagnosed VS and referred on to Skull base surgeon.
What did your doctor say about your diagnosis? Very rare !!!!! same story as everyone else
Is your V.S. located in the upper or lower part of your head/neck/or elsewhere? Middle to upper right neck under jawline
What options did your doctor give to you regarding treatments? Surgery as this was growing faster than usual schwannoma and slight variation in shape.
What treatment did you choose? Surgery,
Why did you choose this treatment? As above, took surgeons advice. He was a very positive person and has seen these before, reassured me a little, although usual suspect risks, swallowing, voice problems, but he seemed to think it would be okay and any problems could be sorted out.
How has your treatment worked? Scheduled for 23rd June, will let you know
During your treatment, how did you feel?
After your treatment, how did you feel?
What things did you need to do, follow-ups after your treatment?
What is the expected result of your treatment?
Any other comments you would like to add: Reading other peoples stories and also your own has been a great help, I think you have done a fantastic job and I really hope that when you go back you have the best result, Good luck!
Patient 11
Male/Female: Female
Date/Year first diagnosed: May 1996
Age at diagnosis: 27
Symptoms leading up to diagnosis: None that I was really aware at the time, my doctor was ruling out aneurism since my dad had recently passed at a young age from one
How was diagnosis established: MRI/MRA.
What was the size of the tumor at diagnosis and has it grown since? 2.5 by 1.7; remarkably it has shrunk this year to 1.2 by .5
After diagnosis what further symptoms occurred? I realized that all the years that I had been passing out so easily it was from my tumor. I also have cluster headaches and although they can not directly link it, it seems so many of us have some sort of migraine headaches. I also have enlarged glands on a constant basis on the same side as my tumor, so much so that they show on my MRI.
What emotional feelings were you going through? When I first found out it was quite a shock. I felt very alone but at the same time I was glad it was me and not someone I cared about since I felt I was strong enough to go through something like that. I wanted to be as educated as possible but back then, there was so little information.
What kind of support did you receive? Friends were a great support but unfortunately my husband at the time wanted me to “forget about it” so in the end we parted ways.
What type of doctor diagnosed you? My neurologist found my tumor but was unable to diagnose. It was my otolaryngologist at the Cleveland Clinic that diagnosed me. The doctor I had is now at Duke.
What was the first initial diagnosis (what did they first think it was)? Vagal schwannoma
What did your doctor say about your diagnosis? They needed to watch it closely for a period of time since diagnosis was made on scans and not by biopsy. Since mine hadn’t grown and wasn’t causing me great issues it was best to leave it alone.
Is your V.S. located in the upper or lower part of your head/neck/or elsewhere? Mine is located in the base of my skull in the hypoglossal area right where all the nerves and carotid come together before they go out of your head to go down your neck.
What options did your doctor give to you regarding treatments? If mine were to grow they told me the only real treatment would be for total removal of the nerve. Now that was years ago. Now if it were to grow I would ask about CK or other treatments. I don’t think I would do surgery at this point in my life for my VS.
What treatment did you choose? Surgery, watch & wait, radiation, herbal ect.. Watch and wait
Why did you choose this treatment? It seemed to make the most sense. My doctor recommended and I also got a second opinion at the House Ear Clinic in LA.
How has your treatment worked? Great! I have had no treatment at all and my tumor has shrunk!
During your treatment, how did you feel? I was more anxious during the first year or two, especially when it came time for me to have an MRI with just watching. But then I got used to it and really don’t think that much about it.
After your treatment, how did you feel? I feel fine especially since I am only going to get checked every 2 years now. I feel very lucky.
What things did you need to do, follow-ups after your treatment? Nothing
What is the expected result of your treatment? My doctor told me at my last visit that he expects with my current shrinkage to expect my tumor to continue to shrink. He really can’t explain why other that it is dieing off. He said that I am the only one that he knows of with a VS that this has happened with.
Patient 10
Male/Female: Female
Date/Year first diagnosed: April 2011
Age at diagnosis: 54
Symptoms leading up to diagnosis: I had been aware of a painless lump in my neck, just under the jaw on the left side. I thought it was a swollen gland. In retrospect, I had been experiencing some tinnitus on that side and my voice was a bit croaky after teaching a class. My blood pressure was erratic and I had pain in my shoulder blade on the same side as the tumor.
How was diagnosis established: When I told my GP about the lump, he sent me for an ultrasound and then, after getting the report (which just described it as a large mass) he referred me to an ENT specialist who ordered an MRI, CT scan and fine needle aspiration (biopsy). The ENT rang me a few days later to tell me he thought it might be a vagal schwannoma. To confirm the diagnosis, he arranged for my case to be discussed the next day at the Head & Neck Department’s diagnostic clinic. It was like being the patient in an episode of ‘House’. After a lot of prodding and muttering while looking at my scans, they all agreed it was indeed a vagal schwannoma.
What was the size of the tumour at diagnosis and has it grown since? 4 x 2 x 2cm. A second MRI in July measured it at 4.7 x 2.2 x 2.6cm.
After diagnosis what further symptoms occurred? I could hear my heartbeat in my ear when lying on my side. When I tried to sing, I could only croak. Swallowing wasn’t difficult but it was less automatic.
What emotional feelings were you going through? Panic, anxiety, stress - but also relief that it was not a malignant cancer.
What kind of support did you receive? Husband was fabulous. Family, friends and work colleagues all very supportive. When I told the senior managers at work they said to take as much time as I needed to find a treatment plan and for the post-treatment recovery.
What type of doctor diagnosed you? It was an ENT specialist who gave me the diagnosis and this was later confirmed by a number of head and neck doctors but the condition was first mentioned as a possibility by the radiologist in the first MRI report sent to the ENT. I only discovered this later when I was given copies of the reports by my GP.
What was the first initial diagnosis (what did they first think it was)? GP initially said it could be anything from a blocked salivary gland to a carotid body tumour or even lymphoma.
What did your doctor say about your diagnosis? ENT said it was a very rare condition, that schwannomas were generally benign but the fact that mine was on my vagus nerve made it nasty. He said it needed to be removed because it would cause serious problems by pressing on adjacent structures (mass effect) and would eventually affect other cranial nerves (particularly the 12th).
Is your V.S. located in the upper or lower part of your head/neck/or elsewhere? It extended up under the jawline in the parapharyngeal space.
What options did your doctor give to you regarding treatments? The first ENT recommended surgical removal and said that this would require sacrifice of the nerve. I asked for a second opinion. The second ENT confirmed that the advice was sound but added that Ii could also consider a period of watchful waiting and then surgery or try radiation. He said radiation was often used for vestibular schwannomas but it was not generally recommended for other schwannomas unless the patient was unsuitable for surgery as the radiation could have adverse effects on adjacent tissue. When I asked this surgeon about intracapsular enucleation (removing the tumor without sacrificing the nerve), I was told that it was just as likely to result in a vocal cord palsy and could allow the schwannoma to regrow so it would be better to accept sacrifice of the nerve, ‘accommodate’ to the voice and swallowing problems and be reassured that the schwannoma would not return. The third ENT I consulted did at least look at the articles I had brought (on nerve sparing surgical approaches to the treatment of VS) and said he would consult colleagues to see if this was possible. Unfortunately, at my next appointment, he said his colleagues had confirmed that it was not possible to excise a vagal schwannoma without sacrificing the nerve. He offered to do a thyroplasty (to splint the paralysed vocal cord) in the same operation as removing the tumor. Only one of these ENT surgeons had any experience removing a schwannoma from a vagal nerve yet all three felt they knew enough to advise me that my ‘best option’ was a form of treatment which was guaranteed to cause serious deficits which would degrade my quality of life forever. This was despite the fact that, in the past 10 years, there have been a number of published case reports describing a new nerve-sparing technique which offers a much better chance of a good recovery. My GP supported my quest to find a surgeon who would use this new technique but was apologetic that he had not been able to locate an ENT who could/would use this technique. He said that, if he was in my shoes, he would track down one of the authors of the case reports – even if that meant going overseas. In the end, I only had to travel interstate rather than overseas.
What treatment did you choose? Once I was able to find the right surgeon, I chose to have the schwannoma surgically removed. I gave up looking for an ENT and, instead, starting looking for a neurosurgeon with extensive experience treating schwannomas. I found a neurosurgeon (Dr Michael T Biggs) who had published articles on the treatment of spinal nerve schwannomas and schwannomatosis. He had never operated ona VS before but I knew he had extensive experience treating acoustic neuromas (vestibular schwannomas) and these are equally tricky. ENT surgeons tend to have a monopoly on treating conditions involving the parapharyngeal space but, when I told Dr Biggs that the only surgical plan I had been offered involved pre-emptive sacrifice of the vagus nerve, he agreed to take my case. He said he would arrange to have an ENT assist in the surgery (which was reassuring) but he would excise the tumor from the nerve. Adopting a multi-disciplinary team approach makes sense as ENTs know the territory but neurosurgeons have more experience operating on nerves using microsurgical tools. Even though it meant having the surgery 1000 klm away from home
Why did you choose this treatment? I chose surgery because I wanted the tumor out of my head. I knew that I would be better able to deal with post-op complications than the anxiety caused by having an avocado-sized
tumor in my head (so that ruled out watchful waiting and radiation which would leave a blackened tombstone behind). However, I would not have gone ahead with the surgery until I had located a suitably experienced neurosurgeon who planned to use intra-operative nerve stimulators and nerve monitors to minimize nerve damage and planned to have an ENT assist in the surgery.
How has your treatment worked? The outcome has been brilliant. The schwannoma was totally removed and I have NO voice or swallowing problems. I was eating normally within 24 hours.
During your treatment, how did you feel? N/A I was anaesthetised so I didn’t feel a thing.
After your treatment, how did you feel? Once the anaesthetic wore off, I only needed paracetamol for a couple of days. The incision was quite sore and left a raised red welt. After 5 weeks, I started treating it with a gel dressing at night and within a week it had flattened the scar considerably. I was back at work 3 weeks after surgery and back kayaking after 5 weeks.
What things did you need to do, follow-ups after your treatment? As the histology confirmed it was a benign schwannoma, the neurosurgeon said there was no need for me to fly 1000 klm back to Sydney for a follow up visit as he was sure he got it all but, if I wanted to, I could have another ultrasound after 12 months to check that it has not come back.
What is the expected result of your treatment? No recurrence is expected. An unexpected result has been that my erratic blood pressure has stabilised and my shoulder pain has gone. I had been on blood pressure medication and having regular physiotherapy for my shoulder pain for a couple of years before the schwannoma was discovered.
Any other comments you would like to add: I feel like I have won the lottery. To a certain extent, luck was involved. However, I have learnt that you have to be your own advocate and not worry about being a 'difficult' patient. Surgeons are brilliant people but they are not infallible, especially when it comes to a low incidence condition such as a vagal schwannoma. Do your homework. Search PubMed for recently-published medical literature on your condition and, if possible, talk through the various options with people who have ‘lived experience’ of the aftermath of these treatments.
Patient 9
Male/Female: Male
Date/Year first diagnosed: May 2011
Age at diagnosis: 31
Symptoms leading up to diagnosis: None
How was diagnosis established: My wife had been reminding me to go get a physical as it had been a while. The morning of my appointment she noticed my neck was a little larger than usual. She said "your thyroid is large". She was recently diagnosed with Hashimotos Hypothyroidism and so I thought she was just exagerating and I promptly dismissed it. I went to the Dr. as scheduled. The physician identified me as relatively healthy (maybe a little overweight) but also pointed out my thyroid as being inflamed. I went home and ate my words. Later an Ultrasound revealed that my thyroid was in fact just fine but there was something else up in there. CT Scan revealed what was thought to be a Corotid Body Tumor. During the CT Guided Biopsy I was awake and when the Dr. put the needle in my neck it induced a severe cough reflex. My oxygen stats dropped severely and the procedure was halted. My neck was sore for days. They did get enough of a sample to send to pathology however and results reveiled that it was likely a Benign Schwannoma. The Surgeon told us it was a Vagal Schwannoma. I've been told it's pretty rare. It's like I won the lottery :-|
What was the size of the tumour at diagnosis and has it grown since?
7 cm by 4 cm
After diagnosis what further symptoms occurred? No symptoms.
What emotional feelings were you going through? Well this just sucks...oh well...let's just get it done and over with
What kind of support did you recieve? Loving wife, parents, family, friends. All wishing me well.
What type of doctor diagnosed you? Head & Neck Surgeon
What was the first initial diagnosis (what did they first think it was)? Corotid Body Tumor
What did your doctor say about your diagnosis? He said I'm fairly young and should bounce back well. While there is always a chance of finding cancerous cells post surgery he is very confident that it is benign.
Is your V.S. located in the upper or lower part of your head/neck/or elsewhere? Lower near my clavical
What options did your doctor give to you regarding treatments? Basically he suggested total removal and warned of the potential effects of vagal nerve damage. We asked for a second opinion of any kind, he stated that any other surgeon would likely give me the same story, we were confident in his abilities and didn't feel the need to hear from another surgeon. We did however want to know more about radiation options. From our research online and on this group we heard very good things about CyberKnife, etc. My surgeon was confident that Radiation Oncology would recomend surgery for my particular case but referred us anyway. A few weeks later we went to the Kaiser Permantente Radiation Oncology Head and Neck Tumor Board in Los Angeles where a panel of MDs examined me and then deliberated privately for a few hours. I was not the only case of the day but I'm fairly certain I was the only Schwannoma. Afterwards they pulled me into a private room where one of the panel members discussed the recommendation. It was determined that Radiation would cause too much damage to the surrounding tissues, limiting options for surgery later on. Also, since my biopsy showed no evidence of malignancy they didn't want to introduce the potential for cancerous cells later in life. They basically told me radiation would burn too many bridges and that surgery left me more options in the long run. Same thing my surgeon told me, but it was good to hear from someone other than him.
What treatment did you choose? Surgery
Why did you choose this treatment? Based on my surgeons recommendations and the same opinion from the Radiation Oncology department we decided to proceed as planned with surgery.
How has your treatment worked? Very well. The surgeon was able to remove all of the tumor. He was also able to leave a piece of nerve in tact. The nerve sheath is gone so the nerve is exposed and may or may not work. In my post-op appointment the surgeon put a scope down my nose to view the vocal chords. He said he can see some movement on the affected side which is a very good sign. Here's hoping it get's better every day
During your treatment, how did you feel? I wasn't really awake during treatment ;-)
After your treatment, how did you feel? After surgery I was pretty groggy. Once I was a little more awake I was able to drink some water but that hurt my throat quite a bit. Thin liquids hurt. Most likely from intibation and laryngeal nerve monitors down my throat. The first semi-solid food I was given was like heaven. The more viscous the better. After a week or so and my throat felt much better and ever since I've been eating and drinking whatever I want. I did aspirate twice while still in the hospital. Once with some jello and once with some watermelon. My incision didn't hurt at all at first. A little tightness later while healing but nothing too bad. I've been off pain meds for weeks. My voice is still very scratchy and breathy and sometimes I have a cough. Run out of gas when attempting long sentences.
What things did you need to do, follow-ups after your treatment? Drain removal. Post-Op examination. Speech therapy
What is the expected result of your treatment? Tumor be gone! possible issues for recovery include partial vocal paralysis, trouble swallowing, aspiration. Hoping none of the above actually happen but planning like they will.
Any other comments you would like to add: Interesting to see the recent influx of Vagal Schwannoma patients. Kudos to Rhonda for establishing an online forum for these things.
Patient 8
Male/Female: Female
Date/Year first diagnosed: April 2011
Age at diagnosis: 25
Symptoms leading up to diagnosis: Nothing specific to the tumor that I know of other than the mass itself.
How was diagnosis established: My internist started with ultrasound, then a head CT, then I was referred to an Otolaryngologist/head neck oncology surgeon who did a biopsy (all tests were inconclusive and abnormal) then they had to order a chest CT, finally an MRI confirmed the Vagal Schwannoma.
What was the size of the tumour at diagnosis and has it grown since? I was just diagnosed and I don't know the exact measurements but I heard them mention around 4 cm.
After diagnosis what further symptoms occurred? Tightness and soreness in my neck around the tumor, difficulty sleeping.
What emotional feelings were you going through?Lonliness, depression, anxiety, and frustration
What kind of support did you recieve? I have a supportive family but I don't have any family members nearby, but I am lucky to have wonderful and supportive friends. Plus I work in a medical school with some extremely supportive people who really try to take care of me.
What type of doctor diagnosed you? A radiologist suggested it and then it was confirmed by my otolaryngologist/oncology surgeon.
What was the first initial diagnosis (what did they first think it was)? Abnormal lymph node, then a tumor.
What did your doctor say about your diagnosis? I was told that VS is very rare and a complicated surgery would be required in order to remove it. Oh and quite a long list of possible issues I may have to deal with after the surgery.
Is your V.S. located in the upper or lower part of your head/neck/or elsewhere? Upper part of the right side of my neck, just underneath my jaw.
What options did your doctor give to you regarding treatments? Radiation and surgery. I was told watch and wait wasn't a good option because of the placement and size. I have seen a couple of surgeons and they have said that surgery is the best option for me since I am 25 and radiation at this point may not be effective.
What treatment did you choose? I'm going to have surgery, but I'm waiting on a few more consultations before it can be scheduled.
Why did you choose this treatment? I have basically been told it is my only option, and my research has made me more confident that it is the best choice for me. I don't want to risk having to deal with this again in a few years. I feel as though I'm too young to be dealing with this as it is.
How has your treatment worked? n/a
During your treatment, how did you feel? n/a
After your treatment, how did you feel? n/a
What things did you need to do, follow-ups after your treatment? n/a
What is the expected result of your treatment? Hopefully once the tumor is removed and I recover from surgery, I will be done with the ordeal and can move forward with my life.
Any other comments you would like to add: I'm really hoping for the best.
Patient 7
Male/Female: Female
Date/Year first diagnosed: July 2001
Age at diagnosis: 28
Symptoms leading up to diagnosis: My first Schwannoma diagnosed was on my face nerve (7th cranial nerve) on left side; my eye was constantly crying and had twitches constantly by this time. I went to an Optometrist and he noticedI had slight palsy. My neck lumps were not taken in to consideration at this time. I have pain that radiates up and down my neck, muscle weakness. The pain can sometimes be unbearable where it is like being electrocuted. I have Memory problems and disorientation.
How was diagnosis established: For my facial nerve Schwannoma they performed a MRI with contrast, and the same with my neck tumours.
What was the size of the tumour at diagnosis and has it grown since? Facial tumour was 1.5cm x 0.8 cm and it had grown to 2cm x 1cm at time of treatment in 2005. Neck tumour I have no idea on sizes or growth as they are clusters and one other is approx 2.5cm at this time.
After diagnosis what further symptoms occurred? My Palsy worsened and had dry eye could close my eye and left side of mouth didn’t move. My neck tumours are getting more painful more on a daily basis rather than just occasionally and weakness has increased also. Memory is shot and it seems to be getting worse.
What emotional feelings were you going through? I was first thinking great I am not a hypochondriac! I was really concerned about how the disfigurement and loss of functions were going to affect my future and my family. Then I determined to find out all I could on this condition, I was not going to let it beat me.
What kind of support did you receive?I have a wonderful family that got me through all of this.
What type of doctor diagnosed you? I had a Neurologist, Ent specialists.
What was the first initial diagnosis (what did they first think it was)? My facial nerve tumour was first thought it could be a blood clot, and for the neck tumours was told it was cat scratch disease.
What did your doctor say about your diagnosis? That I was too young to consider radiation that surgery was my only option. But my palsy was worsening faster than they liked and that the nerve transplant may not be successful, but my Neurologist told me to consider Gamma knife it was left to me to do my own research. My Neck tumours now that are a different story I still am waiting for someone to take my case. One doctor said he was referring me to someone else that was a year ago.
Is your V.S. located in the upper or lower part of your head/neck/or elsewhere? 2 tumours in the mid neck region behind the sternocleidomastoid muscle and lower neck have a cluster maybe 3 tumours just under collar bone. The facial tumour was in the bony canal near the temporal lobe.
What options did your doctor give to you regarding treatments? ENT doctor said surgery only because radiation there is a risk of developing brain cancer. My Neurologist told me consider Gamma knife as he was not confident on a nerve transplant taking.
What treatment did you choose? My neck tumours they still are not clear what nerve it is on and still waiting for a specialist. Gamma knife was the treatment for the facial nerve tumour.
Why did you choose this treatment? I was not comfortable with what the doctors considered a success with surgery. They remove the tumour and you live it was deemed a success. WHAT THE? What about my life after, oh no thanks! The aim for the Gamma Knife was to kill the tumour and hopefully it would shrink.
How has your treatment worked? My facial nerve tumour is all but gone. It has shrunk 90 percent. It is a super terrific out come. Still have MRIS to make sure all the tissue surrounds are fine.
During your treatment, how did you feel? Scared, wondering if I chose the right treatment, apprehensive if it will work. Because it takes such a long time to see the outcome I was could only wait, which is so hard. But ever so sure at the same time I had made the right decision to go with the gamma knife.
After your treatment, how did you feel? Apart from a splitting headache not really much different, the next day I went down to Bondi beach had some breakfast and walk along the beach. Just the flight home the following day was awful my head felt like it was going to explode.
What things did you need to do, follow-ups after your treatment? MRIs
What is the expected result of your treatment? To kill and destroy the tumour and hopefully the tumour would shrink enough to regain facial movement.
Any other comments you would like to add: I still have no idea what nerves my neck ones are on, I am assuming from my symptoms it is the vagal nerve. But I am confident that after my treatment of my facial nerve tumour that these tumours are not invincible. Draw strength from your loved ones and from educating yourself. You are the best judge for yourself. If you are not comfortable with a doctor or with a certain treatment you must listen to your intuition. At the end of the day you are the one who feels the pain and does the hard work to regain your life and health, so you must also base your choices on your lifestyle. I am a huge advocate for Gamma knife treatment as I have 5 kids to care for and surgery was going to need 2 years rehabilitation which was not an option for me. But I am so very happy with the result. Now I will deal with my neck tumours in the same way learn listen and choose my path with what I feel will be the best outcome for me. And most important thing is to laugh even if it starts a coughing fit. I have made fun of this since I found out, I have said to doctors things like “do you know of a good circus I get a job in side show alley.” Or “The tumour made me do that” or other nonsense things because after all being happy brings healing. My favourite saying is I was born in the shallow end of the gene pool. Be strong and be sure.
Patient 6
Male/Female: Male
Date/Year first diagnosed: 15 Feb 2006
Age at diagnosis: 57
Symptoms leading up to diagnosis: Upper resp. infection (unrelated)
How was diagnosis established: Initial US/confirmed by biopsy
What was the size of the tumour at diagnosis and has it grown since? 3.5x3.4x2.8 ---the bugger’s dead tnx to CK
After diagnosis what further symptoms occurred? None
What emotional feelings were you going through? Why Me syndrome - panic
What kind of support did you recieve? Initially None from medical community…great family support
What type of doctor diagnosed you? Radiation Oncologist specialist
What was the first initial diagnosis (what did they first think it was)? Lymph node/thyroid mass
What did your doctor say about your diagnosis? Surgery ASAP
Is your V.S. located in the upper or lower part of your head/neck/or elsewhere? Lower left neck
What options did your doctor give to you regarding treatments? No options - surgery
What treatment did you choose? I was own patient advocate found CK
Why did you choose this treatment? Figured it was my life and I was going to control the issue
How has your treatment worked? 5 years post and not looking back…not looking at the roots, either!
During your treatment, how did you feel? Fine
After your treatment, how did you feel? Slightly tired, initial worst sore throat I ever had
What things did you need to do, follow-ups after your treatment? Relax
What is the expected result of your treatment? Death to the little bugger
Any other comments you would like to add: CK all the way…most pleased with it. I have the best doctor, Nate Kaufman, any one could have.
Patient 5
Male/Female: Female
Date/Year first diagnosed: 2011
Age at diagnosis: 38
Symptoms leading up to diagnosis: large lump discovered on my neck under my jaw.
How was diagnosis established: Ultrasound, Mri, CT scan, Palpitation - all four plus 4 biopsies
After diagnosis what further symptoms occurred? none
What emotional feelings were you going through? A big WTF as all my tests were coming up negative – blood was good, chest xray was good,
What kind of support did you recieve? So far really good…I have yet to tell my extended family and friends
What type of doctor diagnosed you? Otorhinolaryngologist
What was the first initial diagnosis (what did they first think it was)? It was a toss up between schwannoma and paraganglioma
What did your doctor say about your diagnosis? Until the MRI results were confirmed he was still on the fence about what it was. He was very adamant that it didn’t look like cancer.
Is your V.S. located in the upper or lower part of your head/neck/or elsewhere? Upper neck
What options did your doctor give to you regarding treatments? surgery
What treatment did you choose? .. Surgery
Why did you choose this treatment? Didn’t know there was any other kind of treatment and my doctor was very confident this was the best way to go.
How has your treatment worked? I had full excision of the mass
During your treatment, how did you feel? It was surgery so I didn’t really feel anything. My pain has been very minimal
After your treatment, how did you feel? I am still very swollen but the effects of removal so far have been minimal. I have lost some sensation on the side of my tongue but its on a part that I don’t consciously use. My face is still numb but again that could be due to the swelling. Long term effects won’t be known until I am completely healed.
What things did you need to do, follow-ups after your treatment? Take it easy for now. My follow up is coming up so I will know then if anything more needs to be done.
What is the expected result of your treatment? My voice could be affected but they won’t know until after surgery
Any other comments you would like to add: My surgery date was June 2/11. Once the surgery began the doctor discovered that the vagal nerve was actually stretched right over the mass and not attached as first thought. From what I understand the mass was attached to a smaller nerve in the back of my neck. To this point surgery was a complete success. My recovery has been very quick and a lot less painful than we all predicted. I went in for surgery at 11:30, back in my room after recovery by 4 PM and sent home at 6:45 PM the next day (June 3/11) I am now recovering at home with instructions not to do any heavy lifting beyond 5 lbs and no housework at all. For pain I have chosen extra strength Tylenol as my pain is very minimal. Its more of an ache than anything more
Update June 9/11 - Had follow up appointment with doctor. From the sides affects I am suffering, the doctor believes that my schwannoma had attached itself to my sympathetic trunk nerve. I will be seeing him again in 6 weeks to confirm that this was the nerve affected. I currently suffer from numbness on my face, a droopy eyelid and my pupil is now smaller than the other. My vagal nerve was not touched and has suffered no ill affects of the tumor.
Patient 4
Male/Female: Female
Date/Year first diagnosed: June 2010
Age at diagnosis: 49
Symptoms leading up to diagnosis: Acute pain on left side of face
How was diagnosis established: MRI & CT scans
After diagnosis what further symptoms occurred? Left vocal cord palsy & left tongue atrophy so voice volume and clarity not perfect.
What emotional feelings were you going through? Strangely relief as was told I could possibly have throat cancer.
What kind of support did you recieve? Have had speech/swallow/physio therapy (accessory nerve also affected)
What type of doctor diagnosed you? ENT
What was the first initial diagnosis (what did they first think it was)? Throat cancer
What did your doctor say about your diagnosis? The ENT docs where I was diagnosed referred me to Neuro unit at another hospital who specialise. They have told me just about everything there is to know.
Is your V.S. located in the upper or lower part of your head/neck/or elsewhere? Skull-base
What options did your doctor give to you regarding treatments? Surgery to remove/de-bulk followed by period of waiting to see what happens then possible thyroplasty to improve voice quality.
What treatment did you choose? Surgery
Why did you choose this treatment? I was never given a choice it was always just surgery.
How has your treatment worked? Will advise after op next week.
During your treatment, how did you feel?
After your treatment, how did you feel?
What things did you need to do, follow-ups after your treatment?
What is the expected result of your treatment?
Any other comments you would like to add:
Patient 3
Male/Female: Male (I’m filling this out for my husband)
Date/Year first diagnosed: 11/4/2010
Age at diagnosis: 35
Symptoms leading up to diagnosis: ear ringing, stuffiness in ear, hearing loss in affected side
How was diagnosis established: MRI found tumor but then visited multiple Drs before getting an actual diagnosis. The neurosurgeon that did the surgery actually made the diagnosis
After diagnosis what further symptoms occurred? No new symptoms, slight ear ringing remains however surgeon said it could still improve, hearing back to normal
What emotional feelings were you going through? Terribly scared when first found out there was a brain tumor present, at first was told it was probably an acoustic neuroma, read scary stuff on the internet about that, then went to an ENT who couldn’t clearly diagnose. We were told it was probably benign, but didn’t like the probably part! Then went to several neurosurgeons, which was scary when they weren’t sure what type of tumor it was. Knew the neurosurgeon that operated was “the one”, we felt much better after meeting him.
What kind of support did you recieve? None, others made us feel worse when talking about it so we stopped discussing it with others. Stopped reading on the internet as well. I just came back to your site now that he is OK, couldn’t read it before.
What type of doctor diagnosed you? Neurosurgeon
What was the first initial diagnosis (what did they first think it was)? I already mentioned this but acoustic neuroma
What did your doctor say about your diagnosis? Everyone kept saying he was too young to be facing something like this until we met “the neurosurgeon”.
What options did your doctor give to you regarding treatments? He was told he was too young for radiation, long-term effects weren’t known. Everyone said he would need surgery.
What treatment did you choose? Surgery (debulking)
Why did you choose this treatment? Not really given a choice but did get multiple opinions before choosing surgeon.
How has your treatment worked? Wonderfully! The surgeon was great and had lots of experience. He was very reassuring that there wouldn’t be any major complications. Things turned out better than we could have ever wanted.
During your treatment, how did you feel? He recuperated fairly quickly. Surgery was on a Tuesday and he came home on Friday. Thought he’d have balance problems but had none. Could have had swallowing problems but had none. He was out of work for 8 weeks post-op.
After your treatment, how did you feel? See above question, during treatment he felt nothing he was under anesthesia.
What things did you need to do, follow-ups after your treatment? He had to follow-up with the Dr in about 3 weeks after surgery and then again about 6 weeks after. He will have another MRI in Aug just to check everything. If it grows again it will be very slow, as these tumors are always very slow growing. If anything he may need radiation no sooner than 15 years from now.
What is the expected result of your treatment? No surgery ever again!
Patient 2 - Rhonda Edwards (permitted to use name)
Male/Female: female
Date/Year first diagnosed: April 2009 (Easter Weekend, Happy 2nd Anniversary to me this month!)
Age at diagnosis: 43 yrs old
Symptoms leading up to diagnosis: Ear stuffiness, severe knife jabbing feeling on right side behind ear and into head and which also felt like electric shocks, swollen feeling inside which pushed against airway when swallowing, vertigo, hoarse voice. I had been experiencing a hoarse throat since 2002 and had laser surgery on vocal cords because the surgeon thought it would help my voice.
How was diagnosis established: First I had palpitations which found swollen lymph nodes, that sent me to get an ultrasound which found a mass, then they did a CT scan which found the mass again, they diagnosed this as a Carotid Body Tumour, then they did an MRI which confirmed Vagal Schwannoma..
What was the size of the tumour at diagnosis and has it grown since? It was 5.6 cm X 4 cm but grew to 7.1 cm in length within a year.
After diagnosis what further symptoms occurred? Pressure in my right ear as if being thrown down a mountain, breathing began to get laboured with pressure against the airway (my eyes would water and begin to bulge), fatigue, memory got worse!, concentration went down the drain
What emotional feelings were you going through? I was very upset the first 15 minutes I heard the news on the phone, then I realized it was better me than someone I loved. I did have bouts of wanting it out of me. I felt very ugly and felt as if I had the ugliest morphed face on the right side. All psychological.
What kind of support did you recieve? I received amazing support both from family, friends and clients of mine. That is what mainly got me through any of this with such a positive attitude.
What type of doctor diagnosed you? I was first diagnosed by an ENT with some sort of mass. He sent me to a neurologist and he confirmed vagal schwannoma.
What was the first initial diagnosis (what did they first think it was)? At first they thought it was a cancerous mass(carotid body tumour) as this is what the CT scan showed and the prognosis did not sound too good. It was cleared up quickly to be a V.S.
What did your doctor say about your diagnosis? He could not do surgery because of the position and size of it (4.6 cm by 4.0 cm) at the time. He said that in 8-10 yrs I would HAVE to have it out. My symptoms would be so severe by that time it would be the time to remove it. He said after surgery I would be on a feeding tube and would not be able to talk again. Radiation was not an option because Gamma Knife could not be performed on a tumour of that size in the head. Quality of life vs quantity of life was his motto.
Is your V.S. located in the upper or lower part of your head/neck/or elsewhere? It is located high up in my skull base growing up through my jugular foramen.
What options did your doctor give to you regarding treatments? No options but the watch and wait. Once I approached them about the new cyberknife radiation machine coming to Ontario, they said that surgery, or their own Gamma knife radiation was the only option for me. When told previous that it was NO option for me I knew they were not acting in my best interest. They would not even refer me to the Ottawa Hospital for the new treatment. I had to get myself in there. I thank Dr. Sinclair to this day for taking me on as a patient.
What treatment did you choose? I choose CyberKnife radiation. (Dec 2010)
Why did you choose this treatment? My age was not a problem. The C.K. machine is most accurate with less days of radiation. The tumour had grown approx. 20 mm in just over a year. They are supposed to be slow growing but instead, mine was aggressively growing.
How has your treatment worked? I am not sure how my treatment has worked yet as it has only been 4 months. I have an MRI booked in June. I will find out more then. It is still even too soon and there may still be swelling which will make the tumour look bigger. It takes approx. 3 yrs to get the full effect of the radiation.
During your treatment, how did you feel? During the treatments while getting the radiation it was no problem. A mask was fitted for my face and secured down onto a table. You cannot be too claustrophobic or else you will have to overcome a huge obstacle. In the evening after the first treatment, I was very sick with a splitting headache and vomiting. My brain had swelled. This was reduced with steroids. Otherwise, all went smoothly.
After your treatment, how did you feel? After treatment I was very quiet and in my own world. I had returned to work 2 days after my radiation treatments. I was still vomiting for about 1 ½ weeks daily. I had some patches of hair fall out which have grown back in and are about 1 ½ inches long now. My throat was VERY sore about 2 weeks after and this lasted only for about 5 days. I have up and down days where I am totally exhausted. In all, every thing I have described above was short lived and expected.
What things did you need to do, follow-ups after your treatment? No follow-ups. I was a bit confused by this part as I thought there would be some team support afterwards. Most of the literature I had read was from the States and there they do 2-3 week follow-up appointments. My next appt was made to be 6 ½ months after the CK.
What is the expected result of your treatment? Expected result is the tumour should die. 95% of them die. 30% of them shrink down. I just look forward to having this thing not grow anymore.
Any other comments you would like to add: Do your homework. Educate yourselves. Don’t just listen to one treatment option. With this site and the Facebook site I have met many people around the world with Vagal Schwannomas. Every story is similar until you get to the doctors. Then it all changes with the treatments and ideas.
Patient 1 -
Jen Hartmann (permitted to use name)
Male/Female: Female
Date/Year first diagnosed: November 2010
Age at diagnosis: 39
Symptoms leading up to diagnosis: In January 2010 I had a series of excruciating headaches but assumed they were due to my pregnancy at the time. They ended mid-February and did not occur again until November 2010. At that time, I convinced my general practitioner that something was wrong. She agreed to order an MRI just to make sure. I was otherwise perfectly healthy and very physically fit.
How was diagnosis established: MRI
After diagnosis what further symptoms occurred? The tumor was caught so early I had no symptoms. Every neurologist I met with assured me the headaches were completely unrelated.
What emotional feelings were you going through? I was completely and utterly shocked. My general practitioner very matter-of-factly told me “you have a brain tumor” and arranged for me to meet with a local neurosurgeon the following week. I spent the next four days agonizing over the MRI report…trying to make sense of it….researching online, etc. I had no idea you could live with a brain tumor until this happened to me.
What kind of support did you recieve? My husband is a saint. He was incredibly supportive, positive and encouraging. I have also been backed by an entire community of friends and family members including a prayer network that stretched literally around the world. This website and the Facebook VS community were a Godsend!!
What type of doctor diagnosed you? My family practitioner, the Radiologist at our local hospital and local neurosurgeon initially diagnosed me.
What was the first initial diagnosis (what did they first think it was)? I was told I likely had a small (16mm) but benign brain tumor called a meningioma. I was advised to not worry – these are slow growing tumors that rarely cause any issues. The neurosurgeon recommended I get a follow up MRI in 6 months and yearly check-ups after that. After celebrating a bit that night, my husband and I woke up the next day and decided to get a second opinion.
We made an appointment with the University of Iowa Hospital in Iowa City where we met with the head of the neurosurgery department and the lead surgeon for skull base tumors. They disagreed with the initial diagnosis and diagnosed me with what was likely a Vagal Schwanomma. They recommended surgery.
With two opinions in hand we decided to get a THIRD opinion at the Mayo Clinic in Rochester, MN. Mayo is rated second in the U.S. for neurosurgery so we were confident in their counsel. We met with a round of neurologists including the head of their skull base surgery group, Dr. Link. They confirmed that I did in fact have a Vagal Schwanomma.
What did your doctor say about your diagnosis? Dr. Link was very encouraging and had successful experience removing Vagal Schwanommas. He considered surgery a cure as the return rate is very low when the tumor is completely removed.
What options did your doctor give to you regarding treatments? Dr. Link told us he was 51% leaning towards surgery and 49% leaning towards Gamma Knife Radiation. He did not believe watching and waiting would be of any benefit given how small it was. At 16 mm I had more options at my disposal. If I waited, GKR may not be an option and/or I may have irrevocable side effects if the tumor started damaging the nerve on its own.
What treatment did you choose? We chose surgery.
Why did you choose this treatment? I had the luxury of making this decision over 3 months and had the opportunity to meet with 6 neurologists, a speech and language therapist and individuals that had chosen various options. We ultimately chose surgery for the following reasons: (1) I am young and could more readily overcome any of the issues surgery may cause now vs. waiting until the tumor grew. (2) The tumor was still small enough to limit damage to the nerve during removal (3) Gamma Knife Radiation is a one-time shot. You can only get it one time and while the results equal that of a removal, there is still a small chance a cell could live and the tumor could grow back. While that's true for surgery, GKR makes any future surgery difficult and in a very small percentage of cases has actually turned benign cells malignant. (confirmed by both Mayo and Iowa City (4) My husband and I are trying to conceive and there is some research that shows tumor cells can grow during pregnancy. We didn’t want to take that chance. (5) I wanted this tumor GONE.
How has your treatment worked? My surgery was March 10, 2011. 6 weeks later I am thrilled with the results. Dr. Link believes the tumor was removed entirely. My first follow up MRI will be at the 12 week mark and then I’ll return in 2 years. If everything is clear, no follow up is needed and I will be considered CURED. Because we caught it so early, the tumor had just started growing up and out from the nerve – like a mushroom – and had not wrapped around the nerve. This made it much easier to remove and limited any nerve damage. I went into the surgery expecting to have limited or no use of my left vocal cord when I came out of surgery. That did not happen! I do however, have issues swallowing solid foods and need to follow each bite with something to “chase” it down. (I can eat oatmeal, fruit, soup, cereal, chocolate, etc normally - but everything else requires me to drink liquid to swallow). I will start therapy next month to help but overall, my daily life is not impacted. In some cases, the nerve has been known to start working fully again or the other nerve can compensate. Only time will tell!
During your treatment, how did you feel? My surgery lasted just 3.5 hours and I spent one night in the ICU, and 2 days in the hospital. I was on pain meds for the first 10 days and was considerably uncomfortable and tired but had plenty of help at home which is a MUST. Each day after that was all uphill and I continue to gain strength, energy and momentum.
After your treatment, how did you feel? Brain surgery is rough. No doubt about it. But I’d say the first two weeks are really the roughest. It’s absolutely amazing overall just how quickly your body heals and how soon you’re out and about. 6 weeks after the surgery I’m living without much restriction. I’ll be off work for a bit longer and have been advised not to exercise or lift anything over 10 pounds until the 12 week mark.
What things did you need to do, follow-ups after your treatment? I met with my general practitioner to have the staples removed (all 27 of them!) and will meet with the Otolaryngology department at Iowa City to evaluate the swallowing issues I’m having. At the 3 month mark, I’ll return to Mayo to meet with neurologists, test my hearing (it’s absolutely fine), get an MRI and meet with Dr. Link.
What is the expected result of your treatment? As mentioned, a clear MRI at 3 months and then at 2 years is considered a cure by Mayo.
Any other comments you would like to add?Trust your heart. Follow your instincts. Get multiple opinions if time allows and by all means, talk and connect to everyone you can who has been in your shoes. Doctors do not know everything but be sure to talk to the doctors who likely know the most! Know that this is a very personal decision….and there is truly no WRONG decision…only the best decision for you and your family.