smaller tumors, vestibular tests, dizziness

[nannettesea]

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

[Battyp]

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?

[Captain Deb]

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.  

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

[HeadCase2]

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

[Static]

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!

[nannettesea]

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

[Battyp]

I used to love roller coasters!  Not anymore!!

[HeadCase2]

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