ANA Discussion Forum
Treatment Options => Radiation / Radiosurgery => Topic started by: sunfish on September 21, 2010, 06:46:58 pm
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Went to long-awaited neuro-otologist appointment today, to try and get some answers about my long, slow slide into disequilibrium/vertigo. Am wanting to get someone to provide better followup care than I've managed to wring out of the facility that did my CK.
Doc says there's really nothing more that can be done for me at this point. AN-side balance nerve is 46% dead. Apparently, the other 56% just won't give up without a fight! He says that's why my good side hasn't totally compensated. He said it could take months or even a couple years to settle out. He doesn't recommend any meds, and he says I'm so active that vestibular rehab/therapy wouldn't add to what I'm already doing.
Of course, this guy is the doctor that I didn't consult before CK and, of course, he said he would have recommended watch and wait for a year. I'm skeptical - I'll bet if I showed up on his doorstep with my 14x11 mm AN prior to treatment, he'd have wanted to either cut it out or zap it with his gamma knife!
I did like him, and it's a big neuro-otology/vestibular disorders clinic. He said I could make an appointment anytime I had concerns, and they would get me right in.
A great day at the beach afterwards - not too upset about the lack of progress. Lots of exercise and fun with grandkids today, and I feel better overall.
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Sorry you had a bad day at the doctor's office, but in my opinion, there's nothing so bad that a day at the beach can't fix! ;D
Lori
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Sunfish,
I'm sorry you did not get the kind of answers you were hoping for. This kind of no help just frustrates me to no end. Don't give up. I don't know that much about the handling of the partially dead nerves, but there has to be some kind of relief for you. I've heard people on the forum talking about Vit B12 helping with the balance nerve issues. It might not be "the" answer, but might be worth a shot to help.
I hope it gets better for you.
Connie
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Hi Sunfish,
You might want to visit the Cyberknife Support Site. A while ago I remember reading of a procedure that sometimes has to be done to "finish off" the balance nerve if it's causing problems. The site lets you post questions directly to Drs. For myself I'd want to get another opinion. Quality of life is important.
Take care,
Theresa (tsl)