Calling on 5 Year Veterans Posties - Share Your Wisdom Please

[fbarbera]

I would love to hear from some posties who were treated more than five years ago or so. 

I had CK about 1 yr ago and its been a roller-coaster.  Thankfully, most symptoms have now receded considerably, but I do have some lingering sensations that remind me I have a friend hanging out in my IAC.

So I guess I am wondering -- is this basically the condition I should expect to live with from now on?  Or is there a possibility of continual improvement in years 1 through 5 and thereafter?

Any thoughts would be appreciated. 

Francesco

[Omaschwannoma]

What problems are you still dealing with?  If it's balance I know that doctors are looking more closely at Gentamicin titrated injections to kill off the vestibular nerve that can send mixed up signals to the brain.  When this happens the brain never has a chance to fully compensate and take over. 

Thought I'd mention this as it might be what you're dealing with given your vestibular nerve can still be somewhat active after radiation treatment. 

[fbarbera]

It's hard to accurately describe what I'm talking about.  Balance is one issue.  But there's also just a lingering sense of having a tumor -- maybe you could describe it as some minor head pressure or something.

Thanks for the tip on balance treatments.  I'll definitely look into it.   

[sgerrard]

Hi Francesco,

I'm actually one month behind you, so not a five year vet yet, but I still have some lingering sense of having something. Nothing bothers me in particular, except the hearing loss I had at diagnosis, but my ears and sinuses do not feel the same as they did before, and I get the sense they may never be the same. I know that some have posted that two years out or so, they start to feel better than ever, so maybe there is still a way to go.

Steve

[ppearl214]

2-1/2 yrs out... still some issues (ie: balance, tinnitus, etc) but overall, I have to say I am doing well.  For the 5 yrs (or there abouts), we need the likes of Mark, shoegirl (she's at 3 yrs), okiesandy (who, I believe it just beyond 3 yrs), etc.  Will be difficult to have them post as some have just moved along in life and don't frequent here much... good for them

Phyl

[Tumbleweed]

What problems are you still dealing with?  If it's balance I know that doctors are looking more closely at Gentamicin titrated injections to kill off the vestibular nerve that can send mixed up signals to the brain.  When this happens the brain never has a chance to fully compensate and take over. 

Hi, Arushi:

That's good information about the Gentamicin. I remember you mentioning that in another post. Can you please refresh my memory: do the injections also negatively affect the hearing or facial nerves? I still have good hearing on my AN side and no impaired facial function. But I live with constant disequilibrium. Now 3 months post-CK, I'm starting to notice more frequent episodes of very transient dizzyness. Not vertigo, but more a sense that my vision is about to go cross-eyed (it never quite goes that far).

Which doctors are considering Gentamicin injections? Has this been performed on anyone yet? Is it being embraced or considered by any of the high-profile doctors, or is it still more of a fringe protocol?

Thanks,
Tumbleweed

[Kate B]

Francesco,

I am five years out...actually 7 years out!  I had a different treatment.  One of the statements I remember being told to me is that with surgery a person pretty much knows the outcome within six months typically and that for radiation it takes up to two years  for the radiation to finish doing its work.  I do know that when I am in the dark and tired I can bump into things and get off balance...like getting up in the middle of the night to head to the bathroom.

Patience is the key.  No matter what, it is not surprising to have lingering effects of some sort as we all have had a benign tumor in our brain.  So no matter the treatment we are altering our insides in some way. 

Best of luck on your recovery.
Kate

[Omaschwannoma]

Tumbleweed,

My doctor, Dr. Antonelli wrote in 'Notes' about disabling vertigo, dizziness, nystagmus and oscillopsia post treatment and how there is the possibility of vestibular nerve fibers still firing and sending a mixed up signal to the brain.  Until ALL vestibular fibers on the treated side are gone the brain will never fully compensate.  The treatment of choice is gentamicin injections titrated to monitor the hearing nerve as this will kill the hearing nerve.  I lived a long distance away and he felt it best I have the labyrinthectomy as driving back and forth for these injections (usually three) would not be in my best interest. 

Another neurotologist in my area talked at my group meeting about how they are finding more and more patients having balance difficulties and how they are dealing with it.  Yes, gentamicin injections have been around for a while to help people who suffer from menier's disease and cannot live with the imbalance and now the AN doctors are looking at using this same treatment for AN patients.  The decision should be considered seriously judging for oneself how difficult living with the imbalance is as there is risk.  I for one had seizure-like activity toward the end.  I went three years with my brain never compensating fully and today I'm so much better.  I believe he also said upon close examination of the patients inner ear they are also seeing cells of inflammation that are possibly contributing to the imbalance. 

One should talk it over with their treating surgeon regarding the gentamicin injections.  As for how many AN surgeons are "in the know" regarding this I do not know, only that it's new. 

[Tumbleweed]

Thanks, Arushi. I'll be going to Stanford for a followup MRI and audiogram in December and will ask Dr. Chang about gentamicin injections.

Best wishes,
Tumbleweed

[Omaschwannoma]

Donna,

Just to clarify, this would NOT be used on the serviceable side, as that wouldn't make sense, but rather used on the side that was treated by surgery/radiation.  Seems there can be leftover nerve fibers or with radiation the tumor is still there on the vestibular nerve sending "weird" signals to the brain which will never compensate unless total signal of vestibular nerve is dead or gone. 

Hope this clears up any misinformation I posted above. 

[mk]

Which doctors are considering Gentamicin injections? Has this been performed on anyone yet? Is it being embraced or considered by any of the high-profile doctors, or is it still more of a fringe protocol?

Thanks,
Tumbleweed

Tumbleweed,

I just came back from the ENT office, where I went for a follow up hearing test. While I was waiting, I saw an information brochure on Meniere's disease, where it mentioned gentamicin injections as a commmon procedure if conservative treatment doesn't work. I copy:" This intervention is usually about 90% successful in stopping the vertigo attacks. The procedure also carries with it a 10-15% risk of further hearing loss in the affected ear as gentamicin is an ototoxic drug". The brochure made it look like a common type of treatment, not a fringe protocol, at least for Meniere's, like Donnalynn pointed out.

Marianna

[mk]

Hi Donnalynn,

I realized that I didn't structure my sentence correctly: when I referrred to what you said, I meant that you correctly pointed out that drs. have been using this approach for Meniere's disease. As far as I am concerned, I didn't even know what Meniere's disease is before I read this brochure, so I am really totally ignorant on the issue.

Cheers,
Marianna

[mindyandy]

hi Francesco
I am 9 months post CK and I dont have balance issues anymore...I do have the lingering pressure....somedays I dont feel it and its great and then others I do. Strange....

Anybody else with the pressure off and on feeling?

[mrgarlic]

    Greetings to all,,,,,,,,I am coming up on my 5 years and all is well. I had middle fossia surgery by Dr brackmann at the House Ear Clinic. I taped my eye shut for about a year and then they put in a gold weight in my eyelid. I was very concerned about my balance as I had just purchased a new Harley a month before surgery. Dr Brackmann assured me that he has pilots back in the air. He was correct. I have been all over the west coast without a problem. However, I do stumble a bit while walking. My AN side smile never came back but that is a small price to pay. ,,,,,,,,,,,,,,,,,Now I am on a new adventure. I have a Trigeminal Neuroma.  I have met only one other person with this tumor and that is -------Malegant---- She also posts here. It is similar to an AN but this little devil plays other games. It causes Trigeminal Neuralgia. If you want to know more about the symptoms, go to ----  Wickipedia--- I don't for a minute regret my surgery for AN. I also have a little nerve regeneration. I forget the name. It scared me at first because I didn't know what was happening. I now have fun at parties. I can move my chin and my eye blinks.--- That is totally funny!!!! Sinkenesis??


                   Thanks for your interest,,,,,,,,,,,,,,,,,,,,,,,Larry                       

[Sue]

Donnalynn, you are a genius!  Thanks for finding that article.  Wow.  Puts it all right down there in black and white and easily understood, even by me!  Awesome.  Even though my balance issues are minor, a lot of what is said there I can relate to in some way or another. 

Thank you,,

Sue in Vancouver USA