balance nerves stay intact

[syman]

Just had consultation with the second surgeon of my surgical team at Barrow Institute in Phoenix.  The news was better than expected regarding the balance nerves.  I was advised that when the surgery is a "de-bulking" of the tumor rather than a complete removal, the balance nerves are not necessarily lost.  I have seen and heard information to the contrary on this point.  Dr Spetzler was very clear on this point.  Although post surgery there will be a need to monitor the possible re-growth of the tumor, it is a substantial benefit at present to avoid the serious problems with balance issues.  I understand this may not be the case for everyone depending on the size and location of their tumor as well as other individual factors.  But I wanted to share this important information with everyone.  I am in the process of scheduling my retrosigmoid surgery in the near future.  Best to you all.

[LisaM]

Interesting... I'd like to stay in the loop on this thread.  What size is your tumor?  Why are they de-bulking instead  of complete removal? 

[Jim Scott]

Syman ~

As you noted, balance (and hearing) abilities are very individualized by the exact size and location of the AN.  I underwent AN debulking (retrosigmoid) surgery followed by FSR (2006).  My balance nerve had already been severely compromised by my large (4.5 cm) tumor and my brain had basically re-calibrated itself to deal with receiving only one-sided 'information'.  My hearing in the AN-affected ear had already been lost (the price of procrastination) but, fortunately, my 'operative' ear is excellent and I find that, for the most part, I function quite well being SSD (Single Side Deaf). 

In my case, debulking followed by radiation were employed to insure my facial nerves would not be damaged.  I'm delighted to report that this approach was highly successful.  The tumor died and I suffered no facial complications. 

Jim

[hruss]

Syman,

the first two surgeries I underwent were exactly debulking via retrosigmoid approach of a really huge tumor (4.5 +). I had had neither hearing loss nor facial issues prior to diagnosis and that was the most surprising for all doctors. Given its big size and growth around the facial and vestibular nerves and my young age my doctors wanted to save my facial and hearing nerves and to get rid me out of the tumor. After the second surgery my doctors recommended proton radiation the best places being Loma Linda, USA and Dubna, Russia at that time (beg of 2008). I am from Bulgaria, Eastern Europe so it was easier for me to travel to Russia and I sent my latest MRI results to them. Shortly after that I heard from a professor from Dubna who told me that they would try but it would be risky because my tumor was still big for radiation.

For this reason, for the fact that I was 25 at that time (hadn't given a birth yet) and the likelihood of regrowth of the tumor (given its big size), I started to research other surgical options out of my country. I went to Germany and for three years now (yesterday Oct 13 was my anniversary) I have lived with no hearing on my injured side and facial deficiency mostly in my eye.

I hope that your tumor is not big and debulking and radiation can work for you!
Good luck,
Hristina

[wwarr]

Hi Syman,

I am sorry that you are in the "tumor club" with us all.  Researching your options is the best empowerment to oneself.  I felt it so comforting the more I researched and the more I learned.  Knowing all your options and then choosing what feels right for yourself is what I did.  I thought that was the hardest part.  Then just trust and have faith in God and your surgeons.  Your going to do great!!  We all know what your going through and it's nice to know your not in this alone.

You are right that "this may not be the case for everyone depending on the size and location of their tumor as well as other individual factors".  As Jim noted, each case is so individualized and varies.  It is only when the surgeons get in there, can they can visualized the involvement of the tumor on your vestibular nerve and other nerves.  I have a friend who underwent a middle fossa surgery and the involvement was all of the facial nerve.  It didn't involve the vestibular nerve so they left it intact.  However, I had a middle fossa surgery (hearing preservation) surgery and my tumor engulfed the vestibular nerve and they resected it completely.  Unlike Jim, my tumor was smaller and my brain never adjusted to the tumor prior to surgery.  I have had balance issues but to be honest, I would rather deal with those issues than worrying about tumor regrowth and a repeat surgery.  My friend who underwent just a debulking of her facial tumor had regrowth within 10 months (tripled in size) and she just had surgery again and radiation.  It's alot to think about but just do what feels right for you.  I went with my gut feeling.  All of the surgeons here in Utah wanted to perform a translab and told me I had no chance for a hearing preservation surgery.  It didn't feel right and I wanted to preserve hearing if I could so I got a second opinion at House Ear Institute and they agreed with me. 

I  hope your tumor is not envasive and the debulking is a success! I will keep you in our prayers.

Wendy   

[mk]

Syman,

have you had a vestibular (VMG) test? The results of this test are useful because they give you information about the current state of your nerve. Having no symptoms is not necessarily evidence that the nerve is not compromised. I never had balance issues, but my VMG test showed 90% weakness. My other side had already compensated that's why I didn't have any symptoms. After surgery, where obviously the nerve was completely removed, I didn't have any balance problems.
I also want to point out that leaving a partially functioning nerve is sometimes worse than removing it completely. The damaged nerve may send mixed signals to the brain, causing many problems. If the nerve is completely removed, then most of the times the other side compensates.

Marianna