Case Study #35, Meera Joshi Shares the Story of Her Spinal Accessory Nerve Schwannoma

Hello everyone!  And welcome to our 35th Case Study!  This one features the story of our friend Meera Joshi, who battled a spinal accessory nerve schwannoma and was successfully treated by Dr Netterville at Vanderbilt University.  We hope you find this story useful, and we thank Meera for sharing her story! - Neil
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1) How old were you at the time of your diagnosis?

I had just turned 27 years old during my time of diagnosis. 

2) Do you have any history of Schwannomas in your family? 

No - None that I know of. 

3) Where was your Schwannoma located? And what were the symptoms that lead to your 

diagnosis? 

My Schwannoma was located by my skull base and under my left ear. The tumor itself was quite large and bulging out of my neck but it was hidden behind my ear, so I never noticed until I got diagnosed. 

I was moving to another state and all the lifting of boxes caused me a lot of left shoulder pain. I was massaging my neck and noticed that I had this huge lump under my ear. My fiancé, who is completely his residency, did a brief check around my neck and suggested I make an appointment with an ENT as soon as possible. 

After several different tests suggested by the ENT (Ultrasound, CT Scan, MRI, and Biopsy), he concluded that I had a Schwannoma Tumor on my Vagus nerve. I then went to go visit a surgeon out of John Hopkins who had me get another MRI that was specific for the head and neck – she/the radiologist concluded that tumor was actually on the spinal accessory nerve that went to my left shoulder but there was no way of being 100% certain until they were able to cut me open. 

I have had pain on my left shoulder for the past ten plus years and just blamed it on being lefthanded and using that hand/arm dominantly but after being diagnosed it all made sense. The most recent symptoms, before I had my surgery, were a fire like pain on the muscle of my left shoulder. Some days it was so uncomfortable and unbearable. 

4) Could you describe, in whatever detail possible, what kind of surgical treatment was performed on your Schwannoma, and if you would consider it successful? 

I will never forget the day I had surgery.... March 5, 2019. I would say that my surgery was a SUPER success. 

I was extremely unhappy with my surgeon at Johns Hopkins and decided to wait to pursue any kind of surgery until I found the most skilled surgeon who I felt comfortable with. It was an extremely long, nerve wrecking, and heart wrenching process to find a surgeon who specialized in removing Schwannomas successfully. I searched for two years to find a surgeon who was willing to operate on me without leaving me with lifelong neural disabilities on my left shoulder/arm. 

Through this very blog, I was able to find Dr. James Netterville at Vanderbilt University. He is not only an extremely skilled surgeon but also an amazing and compassionate human being who truly cares about his work and his patients. I booked an appointment to see him and as soon as I met him, I know he was the one who was going to help me through this. 

Dr. Netterville and his team are skilled in performing surgeries to help minimize the risk of nerve damage. They used the method of Electromyography which helps with recording the electrical activity of muscle tissue using electrodes attached to the skin and/or inserted into the muscle. During my surgery, the surgical team found that my tumor was actually on a sensory branch nerve (which was the best-case scenario) and they proceeded to cut the tumor and the nerve out from each end rather than using the technique of Intracapsular Enucleation. Removal of the tumor/cutting the nerve has left me with no sensation on my left ear which I am slowly getting used to as the weeks pass. 

5) Having gone through the experience, what do you think are the most critical questions for someone to ask their doctor about surgery and treatment of this kind of schwannoma? 

Some of the most critical questions to ask include:
1) Do you have experience with Schwannomas?
2) If so, how many and what kind of surgical method did they use for the removal? 

3) What are the risks of leaving the tumor alone vs removing it?
4) What their patients’ post-operative outcomes and recoveries were like? 

From my personal experience, if you do not feel 100% comfortable with the surgeon you are seeing do not continue to see them. Bedside manner is just as important as their experience and skill. 

6). Can you describe what the recovery process was like for you - if you feel that you have made a positive recovery…and what things you have done which have been of most help to you?  

My recovery was not what I excepted at all. Since my tumor was coiled up in many nerves including the spinal accessory nerve that went to my shoulder, they had to carefully and skillfully move them all away from the tumor to remove it. I woke up from surgery with all the pain in my shoulder gone but since they had to manipulate the nerve, as a defense mode my shoulder was shrugging. For the first few days, I had to constantly remind myself to relax it and push it down. 

I had a drain sticking out of my head for three days to let the access fluid drain out which was extremely uncomfortable once the anesthesia wore off. My neck was extremely stiff and I had no sensation under my left jaw, on my left ear, and the left back side of my head (this has all slowly come back). I was surprisingly in not much pain at all. In fact, I was able to do almost everything after surgery except lift anything above 5 pounds. 

My surgical team told me that it would take me up to a year to recover and my swelling would go up and down throughout the year. I went back to work three weeks post-surgery which I would say was too early because I would get extremely tried but I wanted to get back into the routine of things quickly which I would say was one thing that actually really helped me recover even faster.  I would say that my recovery has been extremely positive. 

7).  Are you able to do most things that you did before?

Now 10 weeks post-surgery, I am able to do everything I used to before my diagnosis and surgery. The stiffness in my neck has gotten much better and I have almost full mobility to move my neck. The area where the stitches were do get a little stiff some days, but I believe it will get better as time passes. 

*If you have this kind of Schwannoma and would like to speak to Meera for advice, feel free to email her at: meera0503@gmail.com 

Case Study # 28, Sophia Pafitis and her Story of a Sympathetic Nerve Schwannoma (Originally suspected to be a Vagal Schwannoma)

Hello all - and welcome to the 28th of our case study series!  This one features our dear friend Sophia Pafitis, from Australia.  In this Q and A Sophia shares her story of going through the diagnosis experience while her doctors believed she had a Vagal Schwannoma, and how she ended up in the surgical hands of Dr. James Netterville.  Sophia's story took her from Australia to Tennessee, in the states - and to the eventual discovery that she in fact did not have a Vagal Schwannoma; she had a Sympathetic Nerve Schwannoma.  We thank Sophia so much for sharing this experience with us.  And we join with her in the hope that this narrative is helpful to those who may need it. - Neil 

*Note, we stress the Dr Netterville used the technique of Intracapsular Enucleation on Sophia's Sympathetic Nerve Schwannoma.  This is a surgical technique he commonly uses on Vagal Schwannomas. 
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1) How old were you at the time of your diagnosis?

 Saturday 29th March 2014 - 3 months after my 21st birthday

2) Do you have any history of Schwannomas in your family?

No - None that anyone is aware of.

3) Where was your Schwannoma located? And what were the symptoms that lead to your diagnosis?

My Schwannoma was in the base of my skull deep behind/under my left ear. It was so large that my neck was visibly being pushed out and my jawline less defined.

The story of my diagnosis was an ordeal in itself.

The symptoms that lead to an emergency MRI that discovered my tumor were headaches, poor special awareness, dizziness, nausea, and the feeling of muscle weakness/fluid at the back of my neck/base of skull.

At times, I became so weak within an instant that I felt too weak to hold my own head up. This gave me a kind of nausea I’d never experienced before.

I went to the Emergency room in a public hospital, I waited 3 hours, was asked to walk in a straight line by the doctor seeing to me, and was sent home with the diagnosis of a ‘migraine’ – no explorative scans were taken. I knew this wasn’t right.

The next day, my spatial awareness, which had been getting slowly worse over a period of time, was so bad that I was walking into walls that I could see were there in front of me.

I took myself to a private emergency room and was given explorative MRI’s immediately. I was so nauseous at this stage; I had been given anti-nausea medication that made me really drowsy and delirious, like I was on drugs. This sense of confusion made the process all the worse.

My doctor read my scans before the radiologist had – he came and told me he couldn’t see anything, and that I should be fine to go once the radiologist checks off on it. I pulled my IV out of my arm, put my shoes on and packed up my things. Within no more than 5 minutes, the same doctor walked back into the room and said “I am so sorry, the radiologist has looked over the scans and you have a large tumor in your head. I was looking for fluid in the brain and completely missed it. You need to call your parents and tell them to fly to Melbourne immediately.”

I actually thought the whole thing was a joke, my girlfriend and I looked at each other and laughed, I said to the Doctor “Is this a Joke? 5 minutes ago I had a migraine?” This was met with a sobering, “No, this is not a joke, it’s really serious”.

I remember it so clearly, that very second was such a pivotal point in my life. Once my friend and I had processed what we heard, we stared blankly at each other and burst into tears. I called my parents who were in Tasmania, they were beside themselves and desperate to get as much information as possible. I had nothing more to tell them than ‘huge tumor in my head’ before being rushed into an emergency CAT scan. I remember sitting outside the hospital between scans with my girlfriend and I said “my whole life is about to change,” and oddly, I felt really calm.

The craziest part about my diagnosis was that the symptoms I was presenting with were COMPLETELY unrelated to my tumor. A neurologist that saw me after my CAT scan told me this, and I almost didn’t believe him. I would later be diagnosed with an autoimmune/neuromuscular disease called Myasthenia Gravis one year later, which is responsible for the symptoms I was experiencing.

Because of this disease and the tumor, both of which are really rare – it was sometimes hard to identify which was responsible for what I was experiencing.

The most noticeable symptoms I had from my tumor were the occasional but debilitating nerve pain at the base of my skull, which radiated up and around my head. There was no way to relieve this. I can only explain it as hands of fire trying to rip my neck open.

I had also been showing early signs of Horners Syndrome for years but hadn’t picked up on it – my left pupil is almost always constricted while my right dilated. I also can’t sweat or flush on the left side of my face – only in the tip of my eyebrow and side of my nose. If I’m in a hot climate or doing a work out, the entire left side of my face won’t flush or sweat, it’s like a vivid line down my face.

4) Could you describe, in whatever detail possible, what kind of surgical treatment was performed?

My family and I saw a total of 6 surgeons around Australia. It became more and more apparent how rare Vagal Schwanommas are, and how inexperienced the surgeons in Australia were as a consequence. I was the youngest they had seen or heard about with a tumor like mine. The biggest concern amongst all of the surgeons was my ability to speak and swallow post surgery. The voice box/chewing/swallowing seemed to be the main focus. There wasn’t one surgeon I spoke to that made my family and I feel as though I was in experienced, confident hands – because I wasn’t.

The only surgeon we found in Australia that had removed a tumor like mine was in Sydney, and I left that appointment feeling more depressed and helpless than I ever had. I saw he had photos of a daughter who looked to be of a similar age to me in his office – I think it’s easy for surgeons to emotionally disconnect with patients – as of course you would as a coping mechanism, so I asked – if it were her in my position, what would he advise? His face was enough of an answer, he truly didn’t know, and that was never going to be enough for me.

My Mum is the hero in this story. We were told from the outset – they have to sever the nerve to remove the tumor. This method of removal doesn’t allow for ANY hope of nerve preservation, as it’s essentially cutting the nerve clean at either side of the tumor.

In my Mums research, she started reading into a method of removal called Intracapsular Enucleation, which involved cutting the nerve vertically in an effort to ‘scoop’ out the entire tumor whilst preserving as much nerve function as possible.

I asked about this method of removal to 2 surgeons in Australia and it wasn’t even acknowledged or explored as a plausible option.

This lead me to find the schwanomma Facebook support group – which would ultimately result in me getting in touch with Dr. James Netterville in Nashville, Tennessee. It became really apparent that Dr. Netterville and his team were pioneering this method of removal and having amazing results doing so. He’d also done 200+ of tumours in the same/similar area as mine, as soon as I spoke to Dr. Netterville myself, there was never going to be anyone else. Not only is he the most talented, experienced surgeon I had come across, but he is truly one of the kindest, caring men I have ever met. He felt like family.

6 months later – my tumor was removed by and Dr Netterville on the 27th of July 2016. It wasn’t until they started the 6.5 hour surgery did they discover it was in fact a Sympathetic Schwanomma – not a Vagal as all surgeons and radiologists had initially diagnosed, and it was also larger than the scans had shown it to be.

I would say that my surgery was an epic success.

5) Having gone through the experience, what do you think are the most critical questions for someone to ask their doctor about surgery and treatment of this kind of Schwannoma?

- Have you ever removed a Schwanomma? (if the answer is no, I would stop there) - How many?
- What method of removal do you use/ how will you try and preserve my nerve function?*

- What was the success / ability of your patients post op?

Also, ask yourself if you feel like they genuinely care. Being a surgeon is seriously tough gig, and mostly they have little to no bed side manner in protection of getting emotionally attached to patients and how draining that can be, but you should feel and KNOW that they actually do care. You’re entitled to that.

6) Can you describe what the recovery process was like for you – if you feel you have made a positive recovery…and what things you have done that have been of the most help to you?

Recovery was tough, mostly because it was a surprise - the diagnosis had always been a vagal schwanomma, so my expectation of risk and side effects were largely associated with loss of speech and ability to swallow. I had accepted this and was mentally prepared for it. I even signed a contract acknowledging it before I went into surgery.

Turns out, it was a sympathetic schwanomma, which subsequently comes with different risks and side effects, mostly associated with the damage of the sympathetic trunk.

My surgeon was pleased to find it was in the sympathetic nerve, not the vagal, as sympathetic generally have less ability-altering side effects.

I woke up and my entire head felt completely off. I couldn’t feel the left side of my face and was struggling to see out of my left eye and I couldn’t figure out why. The two rigid drainage tubes coming out of my head still make me shudder at the thought.

I saw myself in a mirror and was totally deflated. I was still coming off 6+ hours on anaesthetic and felt like I’d been hit by a truck, but I realized my vision was impaired because my eyelid had completely dropped, as much as I strained to pick it up I couldn’t. I didn’t recognise myself at all.

The swelling makes you stiff, saw and really tender, I found myself naturally sheltering myself from hugs, anyone walking near the left side of my body – any physical contact.

10 months on, my swelling is largely gone and my side effects are the same as when I left the US post surgery – except I recently had my droopy eye fixed with an easy, minor surgery.

I have 3 main issues as a result of surgery:

1: Facial paralysis on the left side of my face, neck and ear. This isn’t noticeable to anyone, I can move my face, I just can’t feel it.

2: Horners Syndrome in my left eye, along with all the side effects it comes with. This process had already started prior to the surgery, but it’s now quite pronounced. My left eyelid noticeably droops and worsens when I’m tired; my pupils are almost always different sizes, if I work out, the color of my face is completely split into two, no redness in the left. I sweat in my eyebrow and tip of my nose, nowhere else.

3: First bite syndrome – This is pretty horrible. Every time I put something in my mouth, whether it’s my toothbrush, a drink of water or food, I get what feels like electric shocks powering down from the top to the bottom of my jaw, my nerve seizes up and precedes cramp - this process happens in under a second. The pain can be so bad that it takes your breath away, and makes the food drop out of your mouth. It doesn’t last a whole meal, the first 2-4 bites are the worst (hence first bite), but I usually need to stop and take a moment before I continue to chew on the non-affected side. My relationship with food has changed since surgery as a result of this. My palette is also extremely sensitive to sweet and sour tastes.

I would say that my surgery was an epic success.

7) Are you able to do all or most the things you did before?Yes! The general recovery + my disease are actually my most limiting things day to day. I don’t eat sweet things in a bid to avoid the pain of first bite – but other than that, I’m HUGELY fortunate.

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Case Study # 17, Lori Cramton Tells us About her Vagal Schwannoma (Tenth Cranial Nerve) Removal

Hello everyone!  Today I am pleased to offer our 17th case study - this is one that we have been seeking for quite some time, the story of someone who has gone through the process of having a Vagal Schwannoma removed.  Friend of the page Lori Cramton was kind enough to tell us her story, which is also important because she had her removal done by a very promising method called Intracapsular Enucleation, which is a style of removal in which the Schwannoma is removed by excising it from its own enclosing capsule.   Lori also had her surgery done by the very well renowned Dr. Netterville of Vanderbilt University Medical center in Tennessee - and Dr. Netterville has gained a reputation as one of the best in treating this kind of Schwannoma.  We thank Lori for her assistance, and we wish her the best on her continued recovery!  (PS. I have heard her sing, and her voice sounds amazing - even after surgery - which is quite a wonderful thing since Vagal Schwannomas are known for ravaging a person's voice, and this example gives promise to this kind of treatment.)
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1)  How old were you at the time of your diagnosis?

I was 38 when the tumor was found.  

2)  Do you have any history of Schwannomas in your family?

None that I am aware of.

3)  Where was your Schwannoma located?  And what were the symptoms that lead to your diagnosis?

Schwannoma on the 10th Cranial Nerve (Vagal Nerve) at the base of my skull/neck, pressing against the jugular vein on the left side (under the ear close to jawline).

I was a "sickly" child with a history of severe migraines from the age of 9 (& still have them on a severe level).  While in college I had a very bad case of mono.  After having mono I began to get sinus infections quite often.  The infections got progressively worse and I was always at the doctor's office for either migraine or sinus stuff.  At 38, after noticing for like a year, that it appeared than one of my "lymph nodes" stayed swollen so I mentioned it to the doctor and she stated it was concerning her too.  She sent me to an ENT who poked and prodded then sat down and said "I don't think it's a lymph node".  By the end of the next day I had an MRI and he personally called to tell me the results.  That it was a Vagal Schwannoma.  He said he would like to remove it and informed me of the long term consequences/side effects.  I was in shock so I agreed to talk to the nurse to schedule the surgery.  After hanging up and talking to my dad he told me that we were going to find another doctor and get a second opinion.  I ended up going to the Chief  Surgeon of Otolaryngology at Duke.  This  doctor stated he would NOT remove it b/c of the damage it could do and suggested we had enough time to watch and wait as they are not normally malignant.  HE said "if I do surgery I WILL hurt you"  So I watched and waited for about 4 years but it started to bother me...pain in my neck...as well as ongoing dizziness, blood pressure and stomach issues (though at the time I didn't know the connection).  It was extremely uncomfortable and although it ended up not growing very fast it started to be visible.  I started to do research online and found a lady named Rhonda Edwards who had a webpage ( http://www.vagalschwannoma.com/ ) and from there I joined the Facebook group she had started and that's how I found Dr. Netterville!  

4)   Could you describe, in whatever detail possible, what kind of surgical treatment was performed on your Schwannoma, and if you would consider it successful? (Or describe what you may know about the surgery that may yet be performed, if you haven't been operated on yet)

I had Intracapsular Enucleation done to remove the tumor by Dr. James Netterville at Vanderbilt Medical Center (Skull-Based Surgery Center).  My surgery was very successful.  Dr. Netterville stated he didn't know what kind of tumor it was 100% until he went in.  He stated that many tumors that are thought to be Vagal nerve tumors are actually Sympathetic nerve tumors, which sometimes have a better outcome.  Due to the location of mine he felt it was Vagal and if so I might have no voice or barely a voice for 6 months to a year.  There was the possibility of needing a a feeding tube due to swallowing issues that often arise.  He felt all of these things would be temporary and get better over time.  I was told to plan to be out of work 6-8 weeks. And if I lost my voice completely there were treatment options.  I had it removed March 3, 2013.  It was a 6 hour surgery.  I woke up talking (even though I sounded like i had laryngitis) and asking for food...which i was able to eat as soon as they transported me to ICU.  I was there for 2-3 days (can't remember)...and even though I was in pain I recovered well.  The left side of my head was numb (especially my ear) for about 3 months before I could feel anything.  The sensations slowly came back and the nerve would "jump" a lot...I would have these spells where i would experience a lot of activity (even acne on that part of my neck) and then it would be better than before.  My follow up appointment at 6 months showed slow blood flow in the jugular vein but the doctor was not concerned.  He said that was common.  I went back to work in 3 weeks but should have waited the entire 6 weeks.  My biggest issue was that b/c my vocal cords didn't "close" correctly I lost a lot of air just moving around so I would get out of breath easy. This would cause me to get dizzy and the extra exertion of trying to talk exhausted me at work.  I had serious blood pressure issues at first but that got better...matter of fact my BP was really bad before surgery but they couldn't get it regulated...it would go to low on meds.  Now I still have spikes but NOTHING like i was experiencing before.  It confused the doctors bc they said if it was bc of tumor it should have dropped but that vaso-vagal response I think for me was hypersensitive and reversed or something I don't know.  Anyway, after surgery it was like that, they thought, because the nerve was healing and it actually got better the more I healed.  Also...by a year I pretty much had my voice back completely.  At my 1 year check-up it was showing that my vocal cords were at 50% (which stunned them and made them excited).  The only symptom I have now is neck pain/pressure (which will trigger a migraine) some pain due to scar tissue, and numbness.  I also had a lot of stomach issues before surgery...they improved about 75%...same with BP.  If I didn't have the migraines I might be OK but I struggle with those which they are certain did not come from the tumor.  

5)   Having gone through the experience, what do you think are the most critical questions for someone to ask their doctor about surgery and treatment of this kind of schwannoma?

Questions about: risks  and long-term side effects, how long it takes to heal as well as reasonable recovery time (the intern that came in to see me on rounds the day I left said in 2 weeks I could return to work...but when I asked the Resident and Dr. N they said to take as long as I needed; he even asked on a follow-up phone call if he needed to take me back out of work so if you go to a teaching hospital you should make sure that you are expressing any discomfort or lack of understanding to everyone including the surgeon...the interns and residents are still learning...and they are learning from you! 

Ask what would happen should the surgeon feel like he couldn't save the nerve (Dr. N assured me that if it was that bad he would close me up and we would possibly do some radiation). 

Ask what to expect as far as normal and not-normal "side effects" (They really don't prepare you for how long it takes to heal...I notice in these groups people asking how long before this gets better and I was the same way.  Even my surgeon and residents didn't fully prepare me probably bc each experience is different and they don't experience it themselves so they really don't know since you leave the hospital and only call if there is a major issue.  

their success rate (get some success stories)

I WOULD TELL EVERYONE TO GO TO VANDERBILT.  YOU CAN'T LOSE GOING THERE...HE SPENDS A TON OF TIME EXPLAINING THE ENTIRE PROCESS. 

6)   Can you describe what the recovery process was like for you – if you feel you  have made a positive recovery…and what things you have done that have been of most help to you?  (Also, you are free to describe what doctors tell you to expect from your recovery if you haven't been in surgery yet)

I've described a lot in the questions above but I didn't mention the drain tube.  They will show your family how to remove and when but be sitting down because you might pass out...I did.  My daughter cut the stitches and did exactly as they taught her but because the tube is near the ear under the skin it gave me a very sick queasy dizzy feeling and I passed out....LOL. That still makes me sick to think about it.   I will say that I would be hard on myself if I laid around too much and I expected my body to heal way faster than it could.  So I would say take the max time out of work...don't push yourself...and recognize that it may take 2 years or more to finish healing...I feel like I'm still healing.  Don't be afraid to ask for help with pain in the beginning...and you may have trouble sleeping because you cant sleep on that one side for awhile because you can't feel it.  What got me through was noticing little changes, as well as stuff I could do to keep from going stir crazy while resting...good books, xbox, my tablet, music.  And don't be afraid to call your surgeon to ask questions.  You never know if what you are experiencing is normal or not unless you ask.  

7)  Are you able to do all or most the things you did before? (Also feel free to describe your abilities even if you are still living with the tumor or tumors)

After 2 years I can now say "yes".  It took a long time to feel like I was completely back to myself.  I still get out of breath easier that before and have issues with the area around the tumor "aching" and I lose my voice quicker at games and concerts but for the most part I'm back to myself.   And I get dizzy if I have any pressure in that area (like if I hug someone tall...lol) The most significant part of my recovery is that I am able to sing again, which I was told my voice would most likely not be back the way it was before but it is! 

Intracapsular Enucleation, A Short Blog on a Promising Treatment - Especially for Vagal Schwannomas

Sometimes it happens that people get the unwelcome news that their schwannoma is in a difficult location - or that the prospects for complete removal are unlikely.  In those cases, schwannoma patients have to consider their options, whether that may be any form of less invasive procedure, like Cyber-Knife, or even a partial removal or 'de-bulking' of their tumor.

Another kind of surgical treatment that has shown great promise, especially in the treatment of Vagal Schwannomas (schwannomas of the vagus nerve) is called Intracapsular Enucleation, or I.E., for short.  Vagal schwannomas (The Vagus nerve is also known formally as the tenth cranial nerve) present themselves often as a mass in the neck, and though a variety of symptoms are often present, a hoarseness of voice is one such symptom that is commonly reported, along with some dizziness and vertigo issues.  (I know of the case of a young male you had a Vagal schwannoma that displaced his jugular vein, causing woozy feelings as his blood flow was being interrupted by the mass pressing into the jugular vein)

However one doctor's name has come up over and over again when researching the issue of vagal schwannomas, and this is Dr. James Netterville, of Vanderbilt University Medical center in Tennessee.  Dr Netterville has become a leading expert in the usage of Intracapsular Enucleation treatment of Vagal Schwannomas, and people who have been treated by him report often better than average results.  You can see his page and profile here at:

http://www.vicc.org/dd/display.php?person=james.netterville

One lady who is going to soon do a case study for the Schwannoma Survivors & Schwannoma Fighters blog stated that she had her Vagal Schwannoma removed by Dr Netterville, using I.E. surgical treatment, and she was still even able to sing afterwards!  In other cases when conventional removals of Vagal Schwannomas have been done - people sometimes emerge from surgery often with a voice that is very weak.  I have read cases where people could not raise their voices above a whisper - or that their voice was no longer normal, and constantly sounded hoarse.  

Why is it important for Intracapsular Enucleation to be well known for Schwannomas - especially Vagal Schwannomas?  From what I can glean from the medical literature it works like this; when the I.E. treatment is performed, the surgeon makes an incision in the "capsule" that surrounds the schwannoma.  (By capsule, we could say in layman's terms that it is something like a thin lining around the exterior of the tumor), and then he or she proceeds to slowly excise the schwannoma from its own capsule.  The schwannoma is then removed, and the theory of why I.E. works appears to demonstrate that often less damage to the surrounding nerve fibers themselves is done by this method, than by the excision of the entire schwannoma, capsule and all - in a more conventional style surgical removal.  Rhonda Baksh, who runs the Schwannomas of the Head and Neck Facebook page, offered her feedback and did reiterate that when schwannomas are removed by this technique, some risk of regrowth is present - and in some patients Gamma Knife or Cyber Knife treatment may be performed to finish off any remaining Schwann cells from the original tumor.  As well, do ask your consulting physician about the risks of regrowth, and what the plan might be should that occur.

So, what are the lessons to be learned?  In short, if you have a vagal (or Tenth-Nerve) schwannoma - please inquire if there is a doctor in your region who uses Intracapsular Enucleation treatment for removal of vagal schwannomas.  Also, if you have the means to do so, inquire with Dr. Netterville's office to see if you are able to go and meet with him for a consult.  I have also been told of the names of three different neurosurgeons on staff at Johns Hopkins, in Baltimore, MD - who all practice Intracapsular Enucleation treatments.  These are Dr. Tamargo, Dr Weingart, and Dr Brem. 

Here are some articles from medical journals that have been very informative:

Schwannoma in Head and Neck: Preoperative ImagingStudy and Intracapsular Enucleationfor Functional Nerve Preservation 

Advantages of intra-capsular micro-enucleation of schwannoma arising from extremities

(A few notes to end this article...I have been in touch with Dr. Netterville and we hope to collaborate on a Q and A article, and get some of his feedback on the necessary information contained in this article.  We've just not yet been able to manage it, schedule wise.  I have also spoken to a surgeon at Johns Hopkins on this same subject.  I plan to amend this article with further information as it comes in to me - but I feel that it is critical to share necessary information as soon as possible.  Expect that this article may be amended and updated - as it is a personal policy of mine to update any published blog article with new, better, or more accurate information, as soon as I learn of it.  Neil @ the Schwannoma Survivors & Schwannoma Fighters page.)