First post ~ advice/calming needed

[Aprilcl]

Hello all,
I was diagnosed with an AN in October '11 and have been "Watch and Wait".  Since then, I have been "listening in" on your conversations and I have learned so much.  You are all so kind to share your experiences and advice.  As a listener, I want you to know we are out there... maybe not posting just yet, but truly appreciating your exchanges. 
   
After today's Dr visit I could use your sage advice. 
When I was first diagnosed, I had lost my hearing on the left side.  At first the AN only really affected my hearing and balance.   I did have a slight intermittent twitch in the same eye as the hearing loss, but it wasn't that bad.  Over the past few months, the balance and twitch got significantly worse.  When my eye twitches it looks like I am trying to wink...  corner of my goes up and eye closes.  Also, I have a stumbling gait to my walk. The combination can be really embarrassing. 

Today, I was told that my tumor is located where the facial, hearing and balance nerves come close to intersecting!  It is the trifecta of tumors! My hearing, balance and face are all affected.   The Dr said that the tumor may not be growing, just irritating the nerves more.   He does not believe it is  damaging the balance and facial nerves and wants me to wait a few more months to get another MRI.   He also said that I will never be a candidate for radiation, either just WatchandWait or Surgery. 

Meanwhile, he said there is a shot that can help the balance.  It works by killing the balance nerve near the tumor.  He also said that if I did have surgery he would require that we kill off this nerve before the surgery.
 
Has anyone done this?  I looked through the posts and could not find it.   
Thank you all!  Chris

[Jim Scott]

Hi, Chris - and welcome ~

Thanks for your kind words about the ANA website discussion forums.

I'm afraid I don't have any credible information to offer on the 'shots' to help your balance but I hope your issues can soon be resolved. 

Please try to keep us updated.  Thanks. 

Jim

[JAndrews]

I have never heard of such a shot, and I have been a nurse almost 12 years.  I would get another opinion. I had 4 opinions--I am fine.

[Rivergirl]

Never heard of the shot or killing off the nerve before surgery.  Yes, I would get a second opinion.  I will say I do think my balance is better since the surgery once the balance nerve was cut during surgery, I compensated very quickly as my body was already compensating before surgery.  Good luck with your information journey.

[JAndrews]

Hey there it's me again! I also wanted to add that I don't understand the reason for waiting and doing another MRI. It sounds like you have quite a few symptoms and that something needs to be done.

[PaulW]

Gentamicin is sometimes used to destroy the vestibular apparatus.

 

[Aprilcl]

Thank you all for your kind words and advice. 
PaulW - Yes it is called Gentamicin.  It is an antibiotic that kills off the balance nerve on one side.  Then the other ear takes over.  The Dr said they have had such great luck in giving it to people before surgery that they are now offering it as an option to those W&W patients with balance issues.

JAndrews - I could have the surgery if I really pushed hard.  The Dr's recommendation was to wait until March and see if I could adjust to the balance and facial twitch... I am already ok with the hearing loss.  Please note: I will never be a candidate for radiation, so my options are W&W or surgery.  Since the tumor may be attached to the facial nerve, the surgery may result in partial facial paralysis.  Between that and the idea of brain surgery is enough to make me not push hard, yet!
Again, thanks to you all!     

[mk]

Hello Chris and welcome.

There had been mention of Gentamicin long time ago on the forum - it can be used to "kill" the vestibular nerve, although my understanding is that generally this is not recommended in North America. There was a member from Sweden, if I remember well, "catlover", who received a shot prior to her translab surgery. You may want to check out her posts - I think that it didn't really work. Sometimes this is used for patients who really experience trouble from a partial functioning nerve after surgery or radiation, but it is certainly not used regularly.

As for the tumor affecting all three nerves, this is exactly what all ANs do - they grow (usually) on the vestibular portion of the vestibulocochlear nerve, they affect the cochlear (hearing) portion as well, and the facial nerve, since it travels parallel and very close to the vestibular nerve inside the IAC. This doesn't mean necessarily that the facial nerve will be damaged after surgery, often neurosurgeons leave a small sliver of the tumor that is attached to the facial nerve. However the fact that you are having twitches is a bit unusual for an AN (although not impossible). Is there a chance that this may be a facial neuroma?

Also, why did your doctor say that you will never be a candidate for radiation? I may have missed this, what is the size of your tumor?

Marianna

[LisaP]

Hi,

I have been W&W for almost 4 years now and have not ever heard of a shot for balance.  I continue to have some balance issues at times, I mostly feel like I am going to fall backwards but don't.  Good luck on your W&W journey.

LisaP

[ombrerose4]

Hi,

Some of the doctors in NYC are using the gentamycin pre surgery to kill off the balance nerve slowly. The advantage to this is that your body adapts as your nerve is dying and after surgery many experience no balance issues, nausea or dizziness. I believe this is in trial stages right now and not all doctors are participating. I have 2 members in our NYC support group who have participated in this trial. If you would like more info let me know and I can have one of them get in touch with you.

[Tumbleweed]

Take this with a grain of salt (because my memory is a bit unclear on this subject), but I seem to remember that gentamycin can also kill off the hearing nerve. Since you are already SSD on your AN side, this is not an issue. But it raises the question as to whether gentamycin is also damaging to the other cranial nerve that's in the vicinity of the balance nerve, namely the facial nerve. I don't know. But I would proceed with caution and research the heck out of this before allowing your doctor to administer a gentamycin injection.

One of the reasons I see a red flag going up is that, like Marianna, I am befuddled by your doctor stating that your AN is located close to where the balance, hearing and facial nerves intersect. All ANs do! Perhaps he meant to say that your AN is located near the root entry zone (for all three nerves) to the brainstem, which would mean it is located at least in part in the CPA, or cerebellopontine angle. In either case, it's a somewhat odd statement and it gives me pause to wonder about the gentamycin recommendation. And saying it is required before doing surgery is very odd indeed. Another red flag, IMO.

As far as I know, the only reasons (and they're often related) for ruling out radiation treatments are 1. the tumor is too large, and 2. it's indenting the brainstem.

You really need at least one (or two or three) more highly expert opinion(s) to put this in proper perspective. I would consult Dr. Derald E. Brackmann at House Ear Institute and Dr. Steven Chang at Stanford (sdchang@stanford.edu). Both will review your MRIs and related materials for free and offer their highly expert recommendations for treatment.

Best wishes,
TW

[Aprilcl]

Thank you all for your advice! 
Marianna and Tumbleweed The tumor is 7 (AP) x 11 (TV) x 5 (SI) mm.  Not large at all.  I will figure out a way to add the size to my signature.   To Tumbleweed's point, red flags everywhere... it is not to big and it is not located near the brain stem. 
Dr 1 said radiation is not an option because it is difficult to operate on a radiated tumor.  I didn't even think of questioning this rationale until I saw your note.     

ombrerose4 thanks for the offer re: Gentamicin.  But after reading through other posts, I am no longer considering it. 

All - I did get a second opinion yesterday from Dr. Bigelow (U Penn).  He offered three options w&w, radiation or surgery.  With his recommendation of W&W.  MRI is scheduled for March, if there is no change I think I will W&W and walk and "wink" like a drunken sailor.  If there is growth, I will consult with Dr. Chang at Stanford.  BTW - I am in Connecticut.

[CHD63]

Chris .....

A little late adding my welcome.  It sounds like you are following your "gut" (if you will) and checking out all of your options.  That is terrific.  Knowledge is power.

Thoughts and prayers for no growth so you can continue in wait and watch.  Do be mindful of any significant change in your symptoms and move up the time schedule if needed.

Clarice

[chloes mema]

So glad you got another opinion and doing the MRI in March.  None of these options are one to jump right into.  Keep researching and "follow your gut".   

Karen

[Jim Scott]

Chris ~

Another Nutmegger!  Where do you live in Connecticut?

I'm near Litchfield and had my AN surgery (and later FSR) at The Hospital of Saint Raphael in New Haven.  http://www.srhs.org/  My doctor was Issac Goodrich ably assisted by Dr. Judith Gorelick.  Both doctors are affiliated with Connecticut Neuroscience in New Haven.   http://www.ct-neurosurg.com/2801.html   I had a wonderful outcome with these fine neurosurgeons but I think Dr. Goodrich is semi-retired, now.  If you desire further information, please contact me via the PM system.  Thanks.

Jim