Friday, May 22, 2015

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:

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:

(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.)

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