ANA Discussion Forum
Archive => Archives => Topic started by: nannettesea on April 25, 2006, 10:34:55 am
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Guess who---who else asks about dizziness?
After my trip to Chicago, and found vestibular function in bad ear, I'm wondering about something...
I think it's possible that the vestibular test that I did at my surgeon's office before the surgery, specifically the VEMP, may have been inaccurate. The doc in Chicago showed very different (more active) responses than my doc's office did. I may have had more vestibular function in the AN ear than they thought. I had a medium-size tumor, as you see from my signature.
If this is the case, and I actually had very good balance function in the AN ear, does it make sense to everyone that I would be taking a really long time to compensate, since I had little vestibular loss in the first place? A lot of my tumor was in the cerebellapontine (sp?) angle.
Did anyone else have very good balance function pre-op, and then had a harder time with compensation post-op?
Thanks,
Nan
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Nan when I first presented with symptoms I was less steady on my feet. After my 6 mos wait I became more pronounced with difficulties like turnng head while driving I had to hold on to the steering wheel and resettle my equalibrium, I couldn't walk a straight line if my life depended on it. I was constantly walking into walls etc...I find post op I'm better but took a few months to get that way. I've read that if they do not severe your vestibular and leave some intact it does take longer to compensate.
Have you gotten a copy of your surgical report? Did they sacrifice your vestibular during surgery?
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Oh yeah, Nan you are totally talking about my case scenario!!
Up until my diagnosis, I had absolutely no discernible balance problems at all.  I  used to hike solo to take pics for paintings and would climb up waterfalls and rock-hop up streams.  Noticed that I was a little slower than usual in the last couple years, but what the heck, I'm 50 years old.
Anyway, if dizzy means lightheaded and off-balance feeling--that took at least 2-3 years to partially go away and still flares up a. when I've been excercising hard, b. in the dark c. In a crowded place like a mall d. when I'm tired.
I was in physical therapy for 6 months trying to re-train my balance (in between migraines).I had to quit because the headaches kept me in bed 4-6 days a week.  The as the headaches started to fade away, and I was able to be a little more active, my dizziness started to improve.
The brain will compensate over time, but it really needs help--i.e. activity and balance excerises for the two remaining systems on the affected side--the eyes and skeleto-muscular(particularly the sensors on the bottoms of the feet.)
If you are 9 months post-op and haven't done much PT or walking, you are likely to still be pretty dizzy like I was. My headaches kicked in about 5 to 6 months post op, but up until then I was working like hell on my balance, I was walking a mile 2x a day while I was recouping in Florida for 2 months.  I didn't get out as much when I got home due to the weather and the hills where I live, and I seemed to get worse for a while. That's why I got myself to a physical therapist who was trained in vestibular rehab. She gave be bunches of home excercises which I did religiously. ÂÂ
There is a website for VEDA which is for vestibular disorders--ggogle it--has a lot of great information.
My AN was crawling out into the CP Angle like yours was, too and was just slightly smaller.
I fully believe that you can get better, like I did.  We are all here to give you the encouragement and inspiration that you need.  It's hard to do on your own, believe me I know that!  My physical therapist was incredible--called me at home, listened to me cry, encouraged me, praised me--even though I called her "Elivra--mistress of torture!"
Call me anytime you need to talk or if you have any questions.
Capt Deb 8)
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Nan,
People who have good bilateral vestibular function pre-op normally take longer to compensate vestibular function post-op. That's because people who had compromised vestibular function on the AN side pre-op have already somewhat compensated.
Regards,
Rob
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Nan,
My balance was great prior to my surgery but since the tumor was literally wrapped around my 8th cranial nerve and I am told these are very sticky tumors, the nerve was severed/sacrificed during surgery in order to get out the tumor. It was further in and pressing on the brainstem, alot. After surgery, it scared the stuff outta me when I couldn't stand straight without holding onto something. I was 43 and had to use a walker. I was really depressed. Yes, I think those with good bilateral function pre-op definitely take longer to compensate post-op. I'm still a staggering drunk but at this point I just try to make light of it, what else can I do :-\ Hang in there!
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Thanks for input, Rob and Static.
Static, I'm 44, they said I'd get through just fine, but sure didn't think I'd feel so much worse post-op. I admire you, know you're back to work and it isn't easy for you.
Every single one of us here is courageous. What a ride, eh?
Nan
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I used to love roller coasters! Not anymore!!
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Nan,
I'm curious. Can you describe your balance issues? I'm at about 11 weeks post-op, and still have issues where things can move too fast around me. Vestibular processing still seems to be slow. And walking along is still not completely comfortable. The only time I don't notice vestibular effects is when I completely still.
Regards,
Rob