Scroll down and view patient stories..
more to come! (Eighteen stories so far)
Patient 18
Male/Female: Female
Date/Year first diagnosed: September 2008
Age at diagnosis: 38
Symptoms leading up to diagnosis: I kept having one sinus infection after another, among other minor infections etc. I mentioned to my Doctor that I thought it was strange that my left lymph node was always swollen. I thought it was due to allergies but she was concerned as well and sent me to an ENT. I have had migraine headaches my entire life. They have gotten worse the older I get. I have never thought they stem from the tumor I just knew they were worse and originate in a different spot than they used to. I also started having extreme SPIKES in blood pressure (NO explanation…I am 4’10 and weigh right at 100lbs.) and have had ongoing stomach issues (abdominal and upper GI) that have become progressively worse over the years (maybe explained by excessive Excedrin use due to migraine headaches- just started seeing a specialist to determine this.) Have always had swallowing difficulties but so has my mother…she eventually had to have surgery. Doc did not think this was significant. Have also had severe depressive episodes.
How was diagnosis established: MRI, Ultrasound
What was the size of the tumor at diagnosis and has it grown since? 1.92cm x 2.18cm in September 2008; 2cm x 2.2cm in February 2009; 2.6cm x 2.7cm in July 2011
After diagnosis what further symptoms occurred? Over the past 2 ½ years it’s gradually started to hurt…I get neck and ear pain, dizzy at times (depending on how I position neck), facial twitching, numbness/tingling around tumor site, and these weird “shock” feelings in my head that make me feel like I leave my body. Very weird and they come and go and are very quick. Thought it was meds or med withdrawal but it has been going on for years. Constant infections…i.e. cold sores/colds etc. My white blood cell count stays lower than my family med. Doctor would like. Headaches continue to escalate, as well as BP and GI issues (but doctors are not making a connection so may be another reason?). Sore throat too often but may be allergies. All symptoms seem worse when I’m stressed. Depression continues.
What emotional feelings were you going through? Denial, shock, depression, fear, &anxiety; felt lost and hopeless (like there was no solution or there were things that were in my head and not real or since I have been singing my whole life…what if I DO lose my voice?), I eventually stopped talking about it to people or saying when it was bothering me. I continued to look for research that wasn’t there.
What kind of support did you receive? My family and my boyfriend and his family were/are very supportive; Difficulty at work due to being out and no one really understood what I was dealing with unless they were close to me because it was hard to explain. Just recently told my new boss at my new job because I have some Doctor apts. coming up and have to be out. Was afraid to tell it because I didn’t want her to think I couldn’t do my job. And, I didn’t want her to be uncomfortable around me now (that really happens now…people just don’t know what to say)
What type of doctor diagnosed you? ENT found it then I started seeing a Head and Neck Surgeon from Duke.
What did your doctor say about your diagnosis? Was surprised that I found it as it is so rare and there are usually “no symptoms”. ENT that initially found it scheduled surgery but my Dad insisted I get a second opinion at Duke. I ended up seeing Dr. Esclamado, chief of Head & Neck Surgery, who didn’t want to take it out yet…wanted to “wait and see”, said maybe it would stop growing or calcify. He said he prob had a 10 year window to wait because the surgery is risky and I would have permanent damage that would affect my career (such as losing my voice, ability to swallow, facial paralysis, etc.). He said until it caused me more trouble in there than out we should wait. He did not think migraines were related which was my biggest disappointment after getting over the shock of having a tumor.
Is your V.S. located in the upper or lower part of your head/neck/or elsewhere? Lower left, right below the jaw line directly under my ear
What options did your doctor give to you regarding treatments? “Wait and see”; treat symptoms that are not too serious
What treatment did you choose? “Watch and wait” treating any symptoms that come up as they arise. Now have to go to GI specialist and for treatment for BP
Why did you choose this treatment? Not sure losing my voice, etc. is worth it for symptoms that they can’t tell me are related. If they told me migraines would reduce as a result of surgery I would do it tomorrow…voice or not. Migraines are a daily horrifying experience that I wake up with and seem to be originating from my neck most of the time in the past few years.
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? n/a
Patient 17
Male/Female: Female
Date/Year first diagnosed: December 2008 (Christmas time :-/)
Age at diagnosis: 16
Symptoms leading up to diagnosis: Terrible ear aches, numbness and tingling in the right side of tongue, dizziness, and headaches on the right side of my face.
How was diagnosis established: MRI
What was the size of the tumour at diagnosis and has it grown since? I don’t know the exact size, but it was about the size of a golf ball.
After diagnosis what further symptoms occurred? Nothing more, same symptoms.
What emotional feelings were you going through? I was in denial. I was in high school and I didn’t want to admit that I was SCARED!!!
What kind of support did you recieve? My mother and my grandma (Meme) were my rock!!! I just want to be a normal sixteen year old and they did all the research and preparation up until my surgery. It helped me not to panic. My mother also set up a Caringbridge website and I had an outpouring of encouraging messages from people!
What type of doctor diagnosed you? My wonderful ENT Dr. Mowry!!! The most genuine doctor I know!!
What was the first initial diagnosis (what did they first think it was)? Juggulo Tympanic. No one in my town in Oklahoma could identify the tumor.
What did your doctor say about your diagnosis? He told us that it is very serious and that we need to look out of town for doctors.
Is your V.S. located in the upper or lower part of your head/neck/or elsewhere? My tumor was located in my jugular foramen. It didn’t show on my skin.
What options did your doctor give to you regarding treatments? I was always told that surgery was the best option because of my young age.
What treatment did you choose? Surgery.
Why did you choose this treatment? My doctors said because of my young age surgery was the best option in order for the tumor to not return.
How has your treatment worked? Here is where it gets hairy.....I have recieved two surgeries.
First Surgery: I had my first surgery done at Duke in North Carolina. My surgeon was Dr. Takanori Fukishima. I went into surgery with VERY LITTLE information. I thought I was going to go to sleep and wake up with a headache. Instead I woke up in the intensive care unit with an N.G. tube in my nose and extreme pain in my head and neck. I also lost my ability to swallow. I could not even swallow my own saliva. I could not speak about a very quiet whisper. I couldn’t move my tongue or lift my right arm or move my bottom lip. I waited FIVE days for a feeding tube and ended up losing 25 pounds (this made me around 100 pounds and I am 5’ 9”). I had to use a suction machine. I was not given adequate pain medication. I regained my ability to swallow after 3 months (Yes, I went to school and even prom!!) My friends nicknamed my suction machine spishy! They were great and didn’t leave me to recover on my own!!! I was still having headaches so I ended up having another MRI in August 2009. I found out that my tumor was still there. Only about 1/3 of the tumor had been scraped off the bottom.
2nd Surgery: I went on two surgeon visits before choosing a different surgeon this time around: one visit at Vanderbilt and the other at Loyola. I ended up choosing Loyola!!! My surgeons Dr. John Leonetti and Dr. Chad Zender took plenty of time to explain my condition and surgery. They ended up cutting a “C” shaped incision around my ear and exposing the tumor in order to get the whole thing out. Dr. Leonetti removed a few bones in my ear and sewed up my canal (yes I am deaf in my right ear). Dr. Zender then removed the tumor. When I woke up from surgery, I tried to swallow and I could!!! I told the PACU nurse, “I’m so happy! I can swallow.” I received TOP NOTCH care in the PICU although there were some rough patients in the other rooms (gunshot wounds, police officers, yikes!!), but I didn’t remember much of this because they kept me out. The residents at the hospital were always available and excited to help me! My main problems in recovery were severe dizziness, loss of appetite, and vomiting.
After your treatment, how did you feel? After my first surgery, I was very depressed. Not being able to swallow was the worst! So many conversations involved food, I didn’t want to go to restaurants with my friends, etc. But my mom got me through it.
After my second surgery, I felt hopeful. It’s been a year and a half and it hasn’t been an easy road. I have dealt with generalized anxiety disorder and depression.
What things did you need to do, follow-ups after your treatment? After my treatment, I have had several MRIs and an angiogram. I was diagnosed with an acluded (closed) carotid artery on my right side. At some point I probably experienced a stroke or a gradual closing of that artery. I am very lucky to be alive after that. My other arteries and veins have “phenomonal flow to my brain” according to my vascular surgeon. I also have issues with my digestion. My stomach cannot digest certain foods. I got an upper GI scope to diagnose that. I also developed asthma during this time (Could this be because of all of the times I was intibated?)
Any other comments you would like to add: If anybody wants to ask me anything, please email me at mpagew412@gmail.com!! I literally cried tears of joy and relief when I found this website. Sometimes I feel all alone and wish I could compare symptoms with other V.S. sufferers! I am still recovering from surgery after almost two years. Also if you have any swallowing issues, check out VITALSTIM. It is a form of speech therapy that literally made me swallow again!
Patient 16
Male/Female: Female
Hi Rhonda,
Thank you providing a place for people like me to look for support. My Name is Michele and here is my story.
Date/Year first diagnosed: June 2011
Age at diagnosis: 35
Symptoms leading up to diagnosis:
I went to GYN for lump in my left breast. Mentioned lump on left side of neck while there and was told to follow up with my GP. Mammogram was clear, but neck was a different story. A slow progression of symptoms; headaches, discomfort swallowing, lump on neck, nerve "shock" episodes, transient facial palsy on left side, left eye twitching, burning sensation on left side of tongue, ringing in left ear, nausea, light headed when standing up too quickly. Some of these began years ago but I never knew the cause.
How was diagnosis established:
CT Scan w/ I.V. contrast and Octreoscan, 5 biopsies. Last 3 biopsies confirmed a spindle cell tumor consistant with a schwannoma.
What was the size of the tumour at diagnosis and has it grown since?
5.1 cm x 2.1 cm has not been remeasured since initial diagnosis
After diagnosis what further symptoms occurred?
Worsening of swallowing discomfort, now a constant ache and feeling like something is stuck in my throat.
What emotional feelings were you going through?
I am anxious and scared. The rarity of the tumor makes me feel isolated. Having a hard time explaining things to my 5 year old and 2 year old. Husband is very worried. Still trying to process it all.
What kind of support did you receive?
Amazing husband, family, and friends all rallying around me.
What type of doctor diagnosed you? :
First, test ordered by GP, tumor found by radiologist at local hospital, referred to local ENT, then referred by local ENT to the Dept of Otorhinolaryngology at The University of Pennsylvania in Philadelphia. Was diagnosed by ENT Oncology Surgeon, Co-Chairman of the Dept. and Professor of Head and Neck Surgery.
What was the first initial diagnosis (what did they first think it was)?
Swollen lymphnode, tumor of the salivary gland. Then Penn determined it to be a Schwannoma but they are not certain that is on the vagus nerve. I was told that it was likely the vagus nerve, but can't be determined until surgery is performed.
What did your doctor say about your diagnosis?
It is a very rare tumor that it is likely a benign schwannoma possibly involving the vagus nerve. Spindle cell tumors can be malignant or benign, but felt that it is benign, with 96% certainty. He sees roughly 4 to 5 neck schwannoma patients a year and said most of them involved the vagus nerve. Also found an 8mm tumor on the right side of my thyroid gland. Will follow that with ultrasound every 6 months.
Is your V.S. located in the upper or lower part of your head/neck/or elsewhere?
Upper left side. It starts at the base of my skull and extends down along the carotid sheath and ends just under my jaw bone, beneath my ear lobe. It's a dumbell shape. It is compressing arteries against the bone, restricting blood flow.
What options did your doctor give to you regarding treatments?
Surgery and watch and wait, but not too long. If choosing W and W, then evaluate every 3 months. Radiation was not an option since he said it was not successful in guaranteeing that it would stop schwannomas from growing back. It also posed a risk for developing cancer down the road and making future surgery very difficult.
What treatment did you choose?
Surgery
Why did you choose this treatment?
Told that it will only further complicate risks if I wait too long. I have a small chance of having a stroke as it is now. The larger it gets, the worse my deficits may be post-op.
How has your treatment worked?
Haven't had any yet. Surgery scheduled for mid September 2011
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?
I was told that I will return one week post-op to have drain removed, repeat scans, and meet with speech pathologist about therapy and vocal fold injections. Plan for physical therapy for left shoulder if necessary. MRI's yearly to make sure tumor is not returning.
What is the expected result of your treatment?
Complete tumor resection. Possible permanent vocal cord and vocal fold paralysis, inability to project voice, short of breathe when trying to speak, partial tongue paralysis, swallowing difficulties, risk of aspiration when drinking, left shoulder drooping and inability to lift left arm above my head. Told that my age is my best ally and that hopefully there will be some nerve recovery.
Any other comments you would like to add:
Will update when I can, post-op. Would like insight on what post-op is like and how quickly one recovers. I am scheduled to be involved in a major event just 3 1/2 weeks after surgery that involves extended physical exertion, but no lifting. Committed to this event before I even knew I had a tumor, but somehow hope I can still participate. Am I delusional? It's not something I have to go thru with but it is very important to me. I just don't know what to expect because every case is different. Any input would be helpful and appreciated.
Thank you!
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.
