Balance frustration!

[Echo]

As several of my earlier posts indicate I'm pretreatment and balance has been one of my issues.  Lately I've been leaning towards having Gamma (Retrosigmoid was my other option).  Today I was outside using the whipper-snipper to trim the lawn edge along the driveway and sidewalk. Well, you look down, move slow and guess what, when you stop and look up, you sure don't feel good at least I sure didn't!  I love to garden and find this year is it a major struggle.  Any chore where I need to lean my head over causes discomfort and I need lots of little breaks - not something I'm good at getting used to!! 

I've had all the balance testing.  My AN side has a 30% loss of function and my non AN side is "slightly abnormal and mildly disfunctional.  I just wish I could figure out which treatment will give me the best outcome to deal with the balance issue and get me back to normal.  Do there seem to be more post treatment balance issues with Gamma over Retrosigmoid?

Cathie.

[TJ]

Cathie

Of course I am not a doctor, but I have not heard of any treatment that allows you to return to normal.  Any treatment that you choose will likely have some effect on balance. 

Whatever is going on with the balance nerve will more than likely continue after treatment.  The treatment does not repair the nerves.  What you hope for in any treatment is to stop the growth of the AN which hopefully will stop additional problems.

TJ

[arizonajack]

Cathie,

You might consider vestibular therapy.

I had 6 sessions. 2 before GK and 4 after.

I was taught all sorts of exercises that challenge balance.

The balance issues might never completely go away, but you can see an improvement over time with a little effort.

[Echo]

Hi Jack,

I started the paper work in mid April for the referral I need to have the Vestibular Therapy.  Being in Ontario our medical coverage is great but if it's a non emergency, there can be substantial wait times. Thanks for the recommendation!

Cathie.

[arizonajack]

Hi Jack,

I started the paper work in mid April for the referral I need to have the Vestibular Therapy.  Being in Ontario our medical coverage is great but if it's a non emergency, there can be substantial wait times. Thanks for the recommendation!

Cathie.

You'll find plenty of vestibular exercises on the internet if you want to start with a few simple ones at home.

https://duckduckgo.com/?q=vestibular+exercises

Here's a few simple exercises that I found very helpful.

Stand in the corner of the room with your back to the line where the two walls meet. Keep each side of you a couple of inches from the wall. Stand with your feet together (see diagram), stare at a spot on the wall across the room. Do that for 10 seconds. You might feel yourself wavering but that's OK. Practice makes it better. Then close your eyes for 10 seconds, keeping your closed eyes in the same direction as before. You'll find yourself losing your balance at first but, with practice, you'll find yourself in better and better control. You can do the same exercises with your feet in the other two positions for variety. Over time, work your way up to 30 seconds with eyes opon then closed. Do this several times per session.

http://www.physio-pedia.com/images/thumb/8/81/Romberg_2.jpg/369px-Romberg_2.jpg

Once you get good at it, a more challenging method is to use a balance pad.

http://www.amazon.com/HemingWeigh%C2%AE-Balance-Pad/dp/B005F5SI40/ref=sr_1_sc_1?s=sporting-goods&ie=UTF8&qid=1369674688&sr=1-1-spell&keywords=hemingweight+balance+pad

I keep mine on the floor of my living room and do the exercises for a few minutes whenever I walk by it.

[Echo]

Thanks Jack!!  I'll be sure to look into these and get started.

I've gotten used to the daily wobble as it comes and goes and I'm grateful it's not all day.  The hard part emotionally is when you do something like gardening after a long winter and you experience "wonky head" issues. You realize how things have changed from last year to this year.  Overall I'm doing very well, but every now and then this little "alien" throws you a big reminder!

Thanks again - you are a true wealth of information and encouragement!
Cathie.

[nftwoed]

Hello;

   I believe a "return to normal" is impossible. Seems to me VRT is your best bet but one must periodically perform the exercises for life.
   Some, have benefited from as little as 2.00 mg. Valium prn or q.d. That amount is generally non addictive and is enough to sedate the vestibular nerves.
   I'm sorry ... Being bilateral is an even greater challenge than unilateral. Neither being optimal and with great challenge. I think, overall, unilaterals do better vestibularily, however.

[jamcats]

When my husband's retrosigmoid surgery was over, the surgeon mentioned that cutting the vestibular nerve was actually better than leaving a damaged nerve in. He said a damaged nerve could send incorrect signals while a completely destroyed nerve meant the remaining, functioning nerve could fully compensate without interference. It might be worth asking your surgeon about that if that might help with your treatment decision.

And I second the vestibular therapy suggestions. The more he does the exercise, the more rapidly my husband seems to improve. It is amazing to watch!

[Echo]

Hi Jamcats,

Very encouraging to hear how well your husband is doing.  I have read other posts from people saying how much the rehab helps.  It's one of the reasons I wanted to get started pretreatment, it certainly can't hurt. I do plan on discussing the balance issue with my neurosurgeon due to my last round of tests.  My list of questions keeps growing.  The otolaryngologist who had the tests done told me my balance symptoms are most likely worse than would be expected for my tumor size due to the "abnormal function" on my good side.  He said Vestibular Rehab would be a definite must post treatment regardless of what I choose. I'm probably worrying to much about the fact that my good side is not 100% but on the days when my balance is worse than others, it's hard not to worry. 

Hope your husband continues to do great!
Cathie.   

[mesafinn]

Cathie,

I'm frustrated for/with you regarding your balance woes.  Keep us posted, and I sure hope the vestibular therapy helps and does the trick.  And I hope you finally get that necessary referral made!

Patrick

[stoneaxe]

FWIW...I'm a posty toasty....proton beam radiosurgery the 1st time around. That left me with significant balance issues until I managed to mitigate them with my own therapy. When it started growing again 4 years later I had it taken out trans lab. While I still have some wonkiness occasionally it has never been as bad as it was before surgery.