Ok, so you have a Vagal Schwannoma,, WHAT NOW????
Here is the tricky part. I mean tricky because there is no right or wrong. There is ONLY educating yourself before you take the plunge into surgery, surgery mixed with radiation, radiation alone or "watch and wait".
I will once again state, I AM NOT a doctor or anything and am only stating what I have learned.
I actually don't even have the full correct medical terms for much of these procedures, but I can explain them and over the next few days, I'll get the correct terms, but I find it VERY necessary to put this TREATMENT page in pronto as there are new people finding this site daily. You must know your options!!! :)
When dealing with schwannomas, nerve fibers are involved, which can mean lifelong problems if they are damaged or cut. For this reason, it is important to have a skilled neurosurgeon in order to have the best possible outcome.
If you have knowledge of something new, or can help me in anyway better explain the procedures and their terms, PLEASE contact my email and I will quickly adjust. If you find false information, again, please contact me and I will rectify it. Email Rhonda at: ilikepaws (at) hotmail (dot) com or fill out Contact Form
This article/link below will be the most informative to date that you will find. Only put out this year (2010) and it discusses surgery on 7 vagal schwannoma patients and the outcome.
WATCH and WAIT
This is what you do when they feel it is small enough and causing no problems. You watch what happens to it, and you wait to see what it does. Many people go years in the W and W category. It's un-nerving and I know with me, it's hard to have this in you and wake every morning with nothing but IT on your mind. (no pun intended.. lol)
Here is an amazing technique that removes the tumour as well as preserving the nerves. More info to come.. but here is a link to the procedure. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2995979/
Shrinking the tumour with Medication
Afinitor is a medication used to shrink benign tumours. 42% of patients using Afinitor had their tumours shrink to half its original size whereas patients on placebo's had no change at all. Please see the attached link for more info: http://www.medpagetoday.com/MeetingCoverage/MGUCS/31033
RADIATION (read the bottom of this page for G.K. vs. C.K.)
(go to NEWER INFO page here to see the latest on age vs. radiation)
Using radiation may shrink or kill the tumour. In most cases it achieves one of those outcomes to a certain percentage. You may have a bit of both occuring as well with shrinkage and termination of tumour.
I am aware there are different types of radiation. 4 to my knowledge. Each one with different outcomes and for different reasons. It takes 2-3 yrs to see the full results of the radiation regarding shrinkage and termination of tumour.
** Traditional radiation - I don't know alot about this one, but I think it's just too vast a radiation for what we're talking here and that it is not even used on schwannomas in the neck or head.
** Gamma Knife Surgery (G.K.) - This is radiation too. This procedure can only be used on tumours 3 cm and smaller. The radiation is given as a one-time shot dose. It is a more precise radiation but can only be used in the head and neck regions. Once you use this type of radiation, they will not treat the same area again with it if it grows back.
** Cyber Knife Surgery (C.K.) - This is radiation also. This proceudre can be used for tumours over 3 cm. The treatment lasts 1-5 days only. It gets within a hair line fracture of the tumour therefore preventing much damage to surrounding tissue and nerves. If the tumour ever grows back, it can be repeated down the road on that area. It has a new technology that follows the tumour so if you move, the machine stops, re-adjusts and continues the treatment. The claim is, there is not much recouperation after this. People may return to work the next day after treatments. www.cyberknife.com
** IMRT- I am new to this one. I can't really say much about it other than I have been told it is similar to cyberknife but not as accurate or precise. Some surrounding tissues do get comprimised. Treatments can last 1-28 days long. The side effects of IMRT are the same as those of conventional radiation therapy.
** Fractionated Stereotactic Radiotherapy (FSR) - Radiosurgery treatments given over multiple visits are called fractionated stereotactic radiotherapy. I believe this radiation is similar to IMRT.
Vacuuming the "schwammy" guy outta your head!
Check out the link below and see a new procedure that is out... wondering if it gets the cobwebs too?! :)
When dealing with schwannomas, nerve fibres are involved which can mean lifelong problems if they are damaged or cut. For this reason, it is important to have a skilled neurosurgeon in order to have the best possible outcome. Finding a neurosurgeon with an area of focus matching the location of the tumor further reduces nerve damage risks.
** There is the total removal of the tumour. To do this they have to remove the nerve of origin. Remembering, we have two vagus nerves, one on our right side and one on our left. So they remove the nerve from which the tumour is growing from. This will cause problems of course with swallowing, talking.. and who knows what else, but at least the tumour is gone. It has been proven that the other vagus nerve on the other side MAY cross over and compensate for some of the missing functions over time. ALSO, they can do a nerve graft. Before I go into detail about that one cause I'm not sure what happens exactly,, I'll just mention it only.. "Nerve graft". :) I know it has something to do with opening up your skull because the vagus nerve comes from your brain, so they would have to go up and find it :) The tumour is gone though with this procedure.
** There is the partial removal where they take most of the tumour out. Leaving the part that is still attached to your vagus nerve. I'm thinking this is called "de-bulking" but I'm not sure. This saves the function of the vagus nerve. When this surgery is performed, the nerve plus other surrounding nerves can get damaged, therefore causing symptoms that you never had before. Keep in mind, this is a time buying procedure. The tumour will usually grow back. BUT, they can always do a bit of radiation afterwards to kill off any part of the tumour that is left behind. This procedure buys you time.
** There is the removal of the entire insides of the tumour. They open it up, scoop out the inside. In years to come it will grow back, sometimes larger than when you started. When it grows back, they can then do another "debulking" and then radiation. Hey, remember, I'm not a doctor soooo,, I'm going with what I have learned so far.
With any of the above procedures, there is a good amount of healing to get back in order. Your voice will be affected for a time being. Your swallowing will be affected and a feeding tube may have to go in. (Wondering if having my glass of wine would still be the same.. lol) Also, sometimes things never go back to the way you were, but that is a chance everyone takes. Do not let a physician tell you all will be fine. You only have to talk with others who have had this done to know that every situation is different. Some good, some real bad.
Here is a link discussing Gamma Knife vs. Cyber Knife
G.K. vs. C.K. (a message posted on the ANAUSA.org site that I copied and pasted)
Here's my two cents. With surgerical resection (cutting the tumor out), you run a much higher risk of damage to facial nerve function compared with radiosurgery's results in that regard. For example, with my size tumor, I stand about a 31% chance of permanent ipsilateral facial paralysis with surgery, but only 1% chance of same with GammaKnife or CyberKnife treatment. Resection also poses other risks: roughly 10-15% chance of chronic headaches (thought to be due to bone dust being left behind inside the cranium after the operation), a slight chance of cerebrospinal fluid (CSF) leakage, and (very rarely) cognitive or behavioral changes (memory loss and personality changes). And in many cases, surgery involves cutting the vestibular (balance) nerve, whereas radiation treatment preserves the anatomical continuity (but not always full function) of the vestibular nerve. So I personally think you're on the right track with choosing some type of radiosurgery (one-time radiation treatment) or radiotherapy (fractionated radiation treatment, or that which is split up into multiple smaller doses). That said, radiosurgery/radiotherapy only (hopefully) kills the tumor and does not remove it (like resection would). The recurrence rate for surgery and radiation are about the same (cited to be roughly 2 to 3% in most studies).
As for radiosurgery, GammaKnife (GK) and CyberKnife (CK) are both more accurate than standard FSR (fractionated stereotactic radiation) such as Novalis. CK is also a form of fractionated radiotherapy, but its accuracy gives it a leg up on standard FSR.
CK delivers a more homogeneous dose to the tumor compared with GK. CK delivers only 15% higher dose to the center of the tumor than at the periphery, whereas GK delivers fully double (100% greater) dose at the center compared to at the periphery. CK advocates believe that GK's higher dose at the center of the tumor increases the chance of damage to nearby healthy tissue. Also, GK delivers one large dose to the tumor because one treatment is all you can do with GK (this is because a ring is fitted to your head for the treatment and, once it's removed, there's no way to get it exactly in the same place for a second treatment). With CK, on the other hand, a thermoplastic mask is custom-fitted to your head and the tumor's location (in relation to the mask and your bony structures) is plotted into the computer; on followup visits for treatment, they put the mask on your head again and you're ready for the next dose. This flexibility allows CK to apply smaller doses to the tumor than GK with each treatment; together, the smaller doses add up to the same total biologically equivalent dose as you would get with GK's one and only treatment, but (theoretically, at least) the hearing nerve and other healthy tissue has time to recover in between treatments (whereas the tumor supposedly doesn't recover as quickly). Presumably due to the fractionating of dosage, studies show CK yields slightly better results at preserving hearing compared with results for GK. Furthermore, GK's ring is screwed into the head (the screws stop at the skull) to keep it stationary (so that the radiation stays focused on the tumor), a mildly invasive procedure. CK is totally non-invasive: a series of overhead X-rays tracks the patient's head movements and tells the computer-controlled CyberKnife machine which way to move to track any small movements the patient may make so that the radiation stays centered on the tumor. GK advocates say that's all well and good, but GK has about 40 years of track record, whereas CK has been around a lot less time and is not as proven of a treatment as GK. (CK was approved by the FDA in 1999, although Stanford University Medical Center has been using it since 1994 in clinical trials because their Dr. Adler invented CK.)
The best advice I can give you is shop around for the right treatment/doctor/facility for you and get at least 2 or 3 opinions (I got 6!). Develop a list of questions you want to ask each doctor you see, and interview the heck out of them. After awhile, you will know in your heart what is the best path for you personally to take.
I have taken reasonable care to ensure that the information contained on these pages is accurate. I cannot accept liability for any errors or omissions or for information becoming out of date. The information given is not a substitute for getting medical advice from your own GP or other healthcare professional.