Balance problems - still--need your thoughts/opinions

[nannettesea]

Hi all-
I'm now 13 weeks post-op with severe dizziness, not improved since 4 weeks post-op.  Two docs, mine and Dr. Hitselberger in LA, House EC, tell me to give it another 2-3 months before investigating whether or not something else is wrong.  It's so easy for them to say that--I've had to go Part time with a new job intended to be full time, still so sick with dizziness.  Acupuncture isn't helping, started up PT exercises again.

If it were you, would you keep waiting or would you go somewhere else, and to what kind of doc, for answers?  I was dizzy 4 months pre-op, so good ear had lost its ability to compensate, so I keep wondering if there is something wrong with the left ear or in my brain.

Any help appreciated.
Nan

[keys220]

Dear Nan:

Now seven years to the day since surgery (12-2-98) with superb doctors in Chicago, I can only tell you that consistently doing exercises for balance, seeking out expert help, walking at least 30 minutes a day, if possible, and other activities that force your brain to compensate and your body to "retrain" itself will should afford some help to you, I would hope. Although I also had - and still have balance/dizziness problems (almost always feels like I've had two martini's on an empty stomach!), it's a struggle to daily fight the problem. Minimizing as much of the issue by proactively challlenging it and acceptance that we may have to alter our lifestyle et al could be a way to think about how you'd like to approach the problem. Be patient and persistent.

[matti]

I am seven years post op and have been dealing with severe balance issues since then. Finally!!! I am seeing a vestibular rehabilitationist. I was given a posturgraphy test and I failed miserably. My therapist was stunned that the doctor had not sent me from the getgo.  I wish I would have done so 7 years ago as I know things would be much different today. I am seeing improvement only after a few weeks of therapy and am so excited.

matti

[debora]

Nan,

The one thing that has helped me the most is doing the things that make me sick, it is very hard to do but I can do more things now than I could at first, and the nausia doesn't last all day like it used to, it will last any where from a few minutes to around 1/2 hour. If it lasts a whole day now I know I've really pushed it.  I used to get pretty darn sick going to the grocery store or any store for that matter.  The physical therapist said to not avoid places that make you ill just expose your self repeatedly at first only for 5 minutes and have someone else with you that can finish the shopping and go sit in the car.  It works and I can do my own shopping now, sometimes I weave down the isle and hang on to the cart white knuckled.  The best thing I think the therapist said to me is you will feel sick before you get better and to push everyday.  Just hearing that made my illness not so scarey when I felt really bad I knew that I was supposed to.  Keep doing your exercises and if you have fear (I still do on my worst days) call your doctor, sometimes it just helps to go and talk to them, this is pretty scarey when you are sick for so long.   I wish we lived in the same city I think talking with someone who is going through pretty much the same thing is so important.  Email if you wish.

Hang in there.   Deb

[nannettesea]

God, you are ALL so brave.   Thanks for taking the time to write.  I don't know what I'd do if it takes 7 years to get my balance back.  My depression and anxiety have gone through the roof, feel like I need to work psychologically and financially, but it is taking a huge physical toll.  I don't think PT is needed after 5 hours of constant sitting/standing, turning head, etc.  But I'm trying to push.

I'm in communication with some top neurologists that my doc referred me to, but so far none of them have a lot of experience with my scenario.  Why do I have to be so rare!  Well done is better put.   

Thanks again for your supportive and kind words.
Nan

[wind6]

Hi Nan,
Just popped in here to send you a cyber hug. I hope you realize that many of us here think you are very brave too. You are and have been in my thoughts. That is not going to change anytime soon. You and all the other people here are a special kind of lifeline for me so some of my thoughts each day are of the members here.         Always, Sherry

[nannettesea]

Thanks, Sherry.  You're a sweetheart.  I almost quit my job today, so bad, trying to hang on....
Nan

[Crystal]

Hi Nan,

I am 18 months post CK with a 13mm Acoustic Tumor.  I started doing Bikram Yoga this last year which has really helps with my balance issues. 

God bless,

Crystal

[nannettesea]

Crystal,
Isn't Bikram Yoga the challenging type?  Good for you.  I'm not there yet.  Taking 20 minute walks and working 1/2 time, and doing PT is about all I can handle.  But I will consider yoga as soon as manageable.
Thanks for your feedback.
Nan

[Crystal]

It can be too challenging unless you limit your self to work at your own pace.  I like it because of the heat in the room - helps me relax, and the chatter the instructure does makes you concentrate on the voice and the actions rather than other stuff.  Standing in one place, spotting the wall, holding moves on one foot is what helps the balance stuff.  And the deep muscle tissue strengthening also helps with Balance as well.

Take it one day at a time.  It gets better before you know it!

[nannettesea]

Thanks, Crystal.  It helps me so much to hear positive stuff and know I'm not alone with all this, especially on the really hard days.
Nan

[CLAUDIO76]

Hi there. My brother had an acustic schwanoma (4 cm) removed 8 weeks ago. The balance is really wobbly and the double vision (vertical diplopia) is really upsetting him.
Did you notice any double vision during your rehab? How long did it take for you to see normally? Any tips for balance exercises? He's now doing rehab including most of the exercises described in

http://www.tchain.com/otoneurology/treatment/rehab.html

Thank you very much for your amazing website as it's a huge help for patients’ families as well. Thank you
Claudio   -    Italy

[nannettesea]

Hi,
I didn't really have the vision problems.  But they should be able to offer your brother visual exercises when he is ready.  The docs should know when he is ready.

I'm 10 1/2 months post surgery and still have dizziness issues, but I'm sure he will recover a lot faster!

DeniseSmith on the forum has vision problems.  You may look her up here.  They were going to give her special glasses.  But, again, your brother is early out of surgery.  He needs to give this more time, I think.
Nan

[Captain Deb]

Absolute ditto to what keys said! It took a long time for me to regain balance cuz of headaches--kept me in bed and I'd lose what I'd regain.  I definitely would give yourself more time.  I still get bad "wonkyhead" a lot of the time, but it's oh so much better.  I stood on a barstool and changed a lightbulb a few months ago--was kind of between headaches and going to the gym at the time.  Now I'm down with headaches and bad wing and can't work on treadmill, so starting to lose it again.
Hugs to Nan!
Capt Deb

[Joef]

on most days.. I would say my balance is petty good ...

now if I have a bad eye day , and I put in more drops , my vision gets blurred .. and guess what, my balance start to go...  I have a headache ,... my balance starts to go ... I'm tired from working in the yard, fishing, or working in the office ..  several hours,  my balance starts to go...

what I am learning from this,  is since my trans-lab I've lost my balance nerve on that side, I am using my joints and vision to compensate .. now if I get tried or lose my vision (because of drops or its night time) my balance is not as good ..and I need to practice .. the drops in can't do much about .. but now its warm outside, I make a point to play with the dog outside when it dark! .. and doing lots of yard work to increase my stamina  ...   

I think it is helping....