Vestibular therapy

[Shirley48]

Hi. I've hit the 3-month post-op mark and am doing well. Vision is back to normal, hearing is no worse, but balance is still way off and I'm soo tired all the time. My doctor tells me I need to challenge myself more and doesn't seem to think vestibular therapy is the answer (although he reluctantly agreed to prescribe some for me). I start next week, and hope it will be helpful. Besides that, I walk every day and try to keep active, although I feel so much better when I'm sitting or lying down. (I'm 63 and retired, so it's ok to have slowed down but I'd like to be able to make it through a day without so many "rest" breaks.)

[debraclark]

I am 4 weeks post op, so I am having headaches at times, head pain at times, and off balance. Deaf in my right ear now from tumor. I just started VT Therapy last week, I go two times this week. I wonder why your doctor does not think it will help? They say my balance is not that bad but needs work, as do the muscles in my head and neck. So get therapy for all that and have neck muscle exercises and eye tracking exercise to do at home. I also walk every day and that helps too. I wonder what your doctor considers challenging? I know myself when there is too many noises around me it makes me worse so for the time being I am to stay away from crowds, crowded places, etc. But that is fine by me. I also have a little facial paralysis which also causes problems with my right eye but that is getting better. And I am also tired during the day, but early still in my recovery. I had a 3 cm tumor on the right side and had retrosigmoid (10 hour) surgery they got 99.9 % and left a sliver on the facial nerve to preserve it. If I may ask what type of surgery did you have for your AN? How large was your tumor? To be quite honest I never heard of an Acoustic Neuroma until I was diagnosed with one. I hope therapy helps you. Thoughts and prayers coming your way. Take Care.

[CHD63]

Shirley .....

I'm not quite sure why some physicians are so reluctant to recommend therapy ..... my own opinion is, it's an ego thing.

I had vestibular therapy for months (and had to drive 50 miles each way for it) and I can say, without a doubt, the vestibular therapist made me do things (in a safe environment) that I would not otherwise have felt safe to do ..... with excellent results.  Not all vestibular therapists are equal so I hope you have a knowledgeable and good one .

Walking is still the best exercise.  If you walk with someone, lightly hang on to their arm for balance and security, and walk moving your head back and forth sideways for awhile and then up and down for a while.  Increase your speed of head movement and walking as you are able.

Let us know how it goes.

Clarice

[Shirley48]

Thank you both for responding.  It really helps to hear from others who are going through similar experiences.  Debra, I had retrosigmoid surgery, too. My tumor was only 1 cm and they got it all out but did have to cut the vestibular nerve.  My doctor has been wonderful but believes the first three months should be for the brain to start making new connections on its own, without extra therapy. He says I'm doing fine and don't need PT but didn't do any testing to come to that conclusion. I'm glad I pushed him into agreeing to it and believe it will help.  I also picked up some exercise tips from this forum that I'm trying out.  I'll try moving my head more when walking, as you suggest, Cheryl. Hey, Debra, I'm in NJ, too--Summit.

[susierg]

Hi Shirley,
I too am 3 months post-op and still having balance issues.  My Docs gave me a few exercises to try when I left the hospital and just said to call if I was concerned about anythng.  After my second week of just walking laps around my house in the a/c due to the scorching heat in Houston, I called and asked for therapy.  I was lucky in that there was a facility only a few miles from my home.  I did 4 or 5 weeks of therapy, twice a week and it helped a lot.  My therapist gave me exercises I could do at home and really seemed to improve my balance.....until I went back to work 8 weeks after surgery.  I'm still having some issues...good days then bad days, so I am now going to try Yoga.  I had seen several posts about yoga helping with balance so I start next week with a private session geared to help with brain and balance issues.  Might be something else you could look at.  Good luck and I'll tell you what everyone keeps telling me....have patience, it takes time.  AHHHHH!!!  LOL

[lrobie]

From what I've read and discovered, your balance gets better after challenging your brain to correct the imbalance.  In other words, you need to make yourself dizzy and off-balance over and over again in order for your brain to learn how to correct our balance issues.  After I learned this, I've been pretty consistent with twice a day vestibular exercises that include closing my eyes, uneven surfaces, gaze stabilization, etc.  I've even added new ones...one foot in front of the other, standing on one foot, standing on tip-toes all while moving your head side to side.  Make sure you have something to grab a hold of on each side of  you.  I have seen slight improvement.  I just need to be patient.  For a doctor to think you don't need or should hold off on therapy is frustrating to me.  I wish I would have been doing these things religiously from the start.  Especially when it felt better just to sit there and keep my head still because I didn't like the feeling it was giving me when I moved.  When, in reality, I needed to do those things to feel better in the long run.  Sorry, I'm ranting.

Lisa

[It is what it is]

I appreciate your ranting Lisa.  I think it's helpful to all of us who are having balance issues post surgery.

Karen

[Shirley48]

I've been thinking of going back to yoga but have been afraid to try. I like your idea of a private session to see how it goes, Susie.  Thanks to all for your thoughts and suggestions! I can see how important it is to keep moving even though it's so uncomfortable.
Shirley

[debraclark]

Shirley, so you are in Summit NJ? I am in South Jersey Upper Deerfied (outside of Bridgeton) about a little over an hour from Atlantic City, or Philadelphia - Either way. 

[Handma1d]

Greetings!
Add me to the pro vestibular therapy list - it helped me enormously. I am 5 months post-op and doing really well overall. Time and practice. I am reasonably confident that if your doc did a little research, he/she would discover that the brain readjusts, i.e., develops new neuro-pathways, better/faster with via the therapy exercises. And just for the record, tell your doc vt is plenty challenging! Peace, friend. God bless you!
Diane

[leapyrtwins]

I never had formal vestibular therapy, just did vestibular exercises my neurotologist gave me.  I did them both pre and post op and they really helped; I had retrosigmoid, too.

My doc offered to send me to a PT, but I felt I was fine working on my own with the exercises.  My body compensated pretty well post op but I did find that it took me a long time to be able to do a few things I'd previously done.  Riding a bicycle took me 1+ years and walking/running on a treadmill without holding the handrails was something I just mastered about a year ago.  I'm 5+ years post op.

On another note, my younger brother lives in Summit.  Used to work for Schering-Plough/Merck, now works for ADP. 

Small world,

Jan

[millie]

Thanks girls-just out of surgery myself and have read here walking will be best to bring my balance back-does that mean it will get rid of the head fullness-that is my issue.  I'm still numb too.  Thanks.  Noone has mentioned VT yet-just vaguely in hospital but I was pretty unable three days post op.

[kixit]

I start vestibular therapy on the 29th. I hope it helps. I am 5 months post op and still get off balance but what bothers me mostly is the bobble head feeling I have. I could probably live with the balance thing but that wonkiness has to go. I suppose they go hand in hand.

Has anyone fully recovered from this or is it something that will always be there even if ever so slightly?

Thanks!

[Jim Scott]

Kixit ~

I haven't had the 'wonkyness' sensation since a few days after my surgery (2006), but I suspect I'm a bit of an anomaly in that regard.  However, I've observed (from reading posts on these forums for the past 6 years) that in most cases - there are exceptions - the 'bobblehead' feeling does noticeably diminish if not entirely disappear.

Jim