Location of AN...good/bad for radiation?

[Tumbleweed]

In 2008 I went back to Dr. Antonelli and he corrected the problem of oscillopsia with a transcanal labyrinthectomy. My hearing was nil right after my first surgery and one has to sacrifice hearing in that ear so making the decision to go in for another surgery wasn't an issue.  At this time he is thinking my problems were viral labyrinthitis.  What the cause is we are unsure. 

I wanted to share information I heard about from a doctor who spoke at our ANA meeting in regards to balance issues after radiation therapy. Seems there are "others" out there and doctors are now looking into gentamicin injections, titrated (gradual dosages) to make sure one's hearing isn't sacrificed.  The gentamicin destroys the balance nerve and can cause deafness therefore the administration of this drug has to be titrated.  

Arushi, I'm confused. Are you saying that this doctor said that "others" who have had radiosurgery have developed viral labyrinthitis? And that the gentamicin destroys the balance nerve only if not titrated? Or that the purpose of administering gentamicin is to destroy the balance nerve so that it stops sending aberrant signals to the brain?

That's terrific that your oscillopsia was reversed with a transcanal labyrinthectomy. I'm not familiar with this procedure. Did it remove both the labyrinth (semicircular canals, etc.) and the vestibular nerve? Did this more or less completely correct your other balance problems (if any) and not just the oscillopsia?

Many thanks in advance for your clarifications, Arushi.

Best wishes,
Tumbleweed

[Omaschwannoma]

Tumbleweed,

We are not sure about the dx of viral labyrinthitis at this time, but it's a good possibility it was there after surgery and kept worsening over the years as near the end I was having "seizure-type" symptoms where after only 15 minutes of walking it felt as though I were 10-feet tall and falling backwards. 

Those who have had radiosurgery DO NOT develop viral labyrinthitis from the procedure.  I want to make that very clear nor do they develop this because of micro surgery. 

The gentamicin destroys the balance nerve and by doing this it "stops sending aberrant signals to the brain."  The doses are titrated to monitor the "hearing" nerve so as not to cause damage. 

The surgery did remove all that's in the ear, semicircular canals, sacculus, ear bones, vestibular/hearing nerves, and cochlea.  While in there I remember Dr. Antonelli telling me he saw "inflammation" and also noted the hemhorrage in the cochlea along with a prolapsed facial nerve. 

As for my balance, I repeated my vestibular therapy rehab and after diligent daily therapy for 6 weeks my balance was measured at 75%.  This wasn't good enough for me so I continued my daily practice for 3 more months and I am now able to turn quickly without wobbling and the "invisible hand" (moments where I am pushed to one side) have decreased tremendously.  I notice problems in low light/darkness, but not to the severity I had before.  Although, I can totally throw my balance off when I bend over and turn my head, so with practice this should dissipate.  I do take time out to go through my 20 minute PT routine when I know I need it and it helps in setting my balance right for the day.   

As for the oscillopsia, well it's still there, but so, so mild it doesn't make me "ill" anymore to walk or run (just added this one--wahoo!).  Now, had the "so called specialists" in my town caught this earlier on, I would not have the residual problems, albeit small, that I have.  Dr. Antonelli has expressed to me how sorry he is it took so long and feels the specialists in my town should've caught this, also stating he has a "low threshold" when it comes to my seeing anyone here and I agree. 

Hope this answers your questions. 

[Tumbleweed]

Thanks for taking the time to clarify your earlier post, Arushi. That was a big help.

I see by your signature that your labyrinthectomy was 7 months ago. That's still pretty recent. Does your surgeon think your balance will continue to improve as your brain compensates for (adapts to) the loss of vestibular function on the surgery side? Or does he think you've basically compensated as much as you will at this point?

Thanks,
Tumbleweed

[Omaschwannoma]

I have not been in touch with Dr. Antonelli since my 6-week post labyrinthectomy vestibular re-training and have not felt the need to be in touch as my symptoms are small and liveable.  So the answer to your question regarding my gaining better balance is unsure do to the fact it took so long for the dx and tx.  Dr. Antonelli said it is very possible that this is as far as I will go due to the fact it took so long for dx and tx.  I did ask my PT what she felt and with tears in her eyes says she believes it is possible (wonder why the tears?  Maybe she knows something?).  I do see a big difference in how I move around as compared to post 6-week vestibular re-training. 

I do, on occasion, perform "head thrust" test to see if my right side has compensated fully, but as of today it has not. 

Looking back on all this, perhaps had I been in touch with Dr. Antonelli all along, instead of doctors here, this would not be an issue?  Hard to say.  Being so far away from him makes it very difficult for him and me, so seeking neurologist and neurotologist in my town seemed the prudent thing to do?! 

Maybe my story and situation will help those traveling a far distance for tx, and have post tx issues.  I believe one should stay in touch with their surgeon and I believe their surgeon should monitor their AN patients post tx for any and all symptoms--it's just good medicine to run problems past the treating physician always. 

I have heard others post about how, after tx, their doctors leave them with the impression they are releasing them from their care as tx is finished, PT is finished, and their job is done.  Something for "newbies" to keep in mind when they seek doctors to treat their AN--"Will you be available to me post tx should there be any issues?", or if that is not possible, then make sure you line up doctors in your town that are familiar with AN's in case post tx symptoms do crop up (hopefully no one is from my town as they would be $#!* out of luck). 

Dr. Antonelli has put me in touch with one of his students.  I see this ENT on occasion to monitor the hearing levels that are changing in my good ear and even though for him I am a "challenge" as he puts it, he is more than willing to work with me and Dr. Antonelli at the same time without feeling threatened. 

Hope I've helped. 

[Tumbleweed]

Dr. Chang (my Stanford doc) has been unwavering in his availability and dedication post-treatment. When, on 2 or 3 occasions, I had disconcerting symptoms after CK, I emailed him about it and always got a reply very quickly (usually within a couple hours or so). If at all possible, one should try to find a doctor who will continue to counsel them after treatment (if and when necessary). After all, who else knows your condition and the side effects from your specialized treatment better than the doctor who treated you? I personally think any doctor who is too busy to counsel their patient post-treatment is neglecting their duty as a physician. We all know that an AN and/or the treatment continues to affect the patient long after the treatment has been carried out. Shop around!

My two cents,
Tumbleweed