vestibular rehab on the horizon

[nanramone]

Hi all - Today I met with a neurologist to begin the process of finding out how much damage my vestibular nerve has incurred, and to seek some solutions to a few problems. Over the course of the last year, I've gone from being a frequent runner and enthusiastic dancer to a person who has trouble keeping up with people who walk fast! The changes were subtle, and I didn't realize what was happening, but I'm sure not as stable on my feet as I used to be.

So the first appointment was today. The doctor said I have nystagmus, and I'll have a bunch of further testing in a few weeks, then start some rehab exercises. He believes the balance problems I'm having will improve.

Post Gamma Knife on 5-18 - I am staying very active, and for the most part I feel good. I have not felt like socializing, except with my closest friends, but that will change soon. I get very tired after physical exertion. I also think my hearing has worsened after GK - the tinnitus definitely sounds different....the doctor I saw today offered to test it, but I declined, preferring to wait until my 6 month check up and MRI.

I'm still feeling happy about GK and hope others making a treatment decision will strongly consider this option if appropriate.

[Jim Scott]

Nancy ~

I'm glad that you're seeking ways to resolve your balance and other problems and I wish you much success with your rehab program.  Your post is definitely of benefit to those contemplating GK.  Thanks!

Jim

[CHD63]

Nancy .....

I'm glad you will be receiving some vestibular rehab through a trained vestibular therapist.  It did wonders for me.  Just remember it is not an instant fix, but it will speed up the recovery process greatly.

Best thoughts.

Clarice

[Tisha]

Wow, I had to jump right in here when I saw you have Nystagnus....I have that, TOO!  I'm 16 months post Cyberknife and all was well, when 3 weeks ago I started having Nystagnus (i found the term on the cyberknife forum after I explained it...I was saying tracking, when things go back and forth, or up and down).  It's different than vertigo, I knew that.   I had a couple of episodes in the fall that went away after 20 mintues or so, then I as on my way for months without any.  This past May, they were coming really hard and once I couldn't get out of bed.  I started taking steroids for 2 weeks and that stopped it.  I really was a mess these last two weeks, felt like I had brain fatigue, also.  I don't know how I was functioning.

Anyway, I finished my round of steroids a week ago, and the everyday dizziness was getting better.  Had a few days of intense head pressure and not feeling well.

Then, this morning, the nystagnus hit..  I had read about Antivert, (the active ingredient is Mezclinine), and it's also in Draminine non-drowsy, regular dramamine, bonine, or generic tablets (25 mgs).   I went ahead and bought some the other day.  I took 25 mg when it started and within the hour the nystagus is gone, and so is much of the dizziness.   Whew.  I really don't want to do steroids again...I was getting 3 hrs/sleep a night for 10 days.  I'm just now starting to get 5-6 hours, and feeling much better.

I'm going for my 18 month MRI within a couple of weeks, a bit early, but Dr. Chang wants one which I'm happy to get.

Anyway...I guess my rambling post is a recommendation for you to try the Bonine, or dramamine non-drowsy to see how that works (along with seeing your doc).  It may give you some immediate relief like it is me.

Good luck.  I know my tumor is plumped up from my 1 year MRI, and it still must be.  I'm just really wishing this thing would shrink, die and leave me alone.   Tisha

[nanramone]

Thanks to all of you - and Tisha, I appreciate all you wrote about nystagmus. I'm just learning about it now. It seems to be a problem that can have many causes, but I'm finding out now that it is a common side effect of radiation treatment. It doesn't seem to be bothering me much, but I do think it causes fatigue. I feel like napping a lot, even when I've had plenty of sleep.

I also do not want to take steroids unless there is no other option. I will talk to the doctor about the drugs you mentioned, but I don't like to take medication if there is another way to solve the problem.

bye for now~

Nancy

[cin605]

I have this also....sooo annoying.
vestibular nystagmus  thats due to disturbance of the vestibular system; eye movements are rhythmic, with slow and fast components.
Online dictionary.
I am having trouble wearing contacts also.

[wcrimi]

I think I have that issue also, but only when I turn my head rapidly in the direction of where the tumor was.  My eyes do not adjust properly. They sort of dart after a split second delay when I turn left. It's a tad disorienting. I didn't think anything could be done to help it. 

[nanramone]

hi all - results of balance tests in today - the neurologist said the nerve is 52% damaged, and I start rehab in two days. He thinks I will respond well to rehab. So this is great news. I am anxious to see how well I will respond...I think positive thinking will be helpful in this case. I have a tendency to worry if I do nothing, so when I get my exercise program in place and work at this, hopefully the dizziness will lessen...we'll see.

Let's all be optimistic! I notice so many people with far worse problems than I have, including many who visit this forum. And as so many people have mentioned, the period during which we are trying to make treatment decisions is the hardest part. I can live with this imbalance issue!

Hope life is good to you good people!

Nancy

[Jim Scott]

Nancy ~

I'm pleased to learn that you've had your balance issue diagnosed and have a rehab plan in place.  As you advised, I'm optimistic!

Jim

[ombrerose4]

I had a wonderful vestibular therapist and she worked wonders with me. Just remember you need to do your part too, by practicing your exercises that she teaches you a few times every day. I used to walk like a drunk and I hated to walk by myself. My balance is now really good, I walk in a straight line (most of the time), although some days I need to concentrate on it more than others. But I now walk everywhere by myself. Good luck!

[nanramone]

Ombrerose - thank you - yes - the neurologist told me I will have exercises to do, in his opinion, for life...I have "compensated", but can do better - my goal is to run again, dance again, and climb ladders at the theater without experiencing huge dizziness - thanks for info and encouragement!

Nancy

[nanramone]

Just an update:

Rehab has been very successful, and I'm going every other week now, instead of weekly. I've made great progress, and no longer experience so much dizziness - instead of 15+ dizzy episodes per day, it happens maybe two times on average. I am far more stable on my feet. Additionally, I push myself to be as physically active as possible - I have even noticed that on most days, I am not so fatigued, though I still have some days that I find myself needing several naps resulting in 10+ hours of sleep per day. But it IS improving!

The therapist reminded me that I'll need to do these exercises daily for life, or will experience regression. I probably look ridiculous as I take my long daily walks, because I practice eye exercises while walking in the street, turning my head from side to side....well honestly, it is likely that no one is paying any attention, and who cares if they are?


I would encourage anyone with balance issues to at least try vestibular rehab if possible - it works for me!

Nancy

[leapyrtwins]

Nan -

glad to hear the vestibular rehab worked so well for you.

This is valuable information for others who face the same issues you have faced. 

Thanks for sharing your experience; extremely helpful.

Jan

[Jim Scott]

Nancy ~

Congratulations on your success with vestibular rehab.  We appreciate your positive update.  I'm sure few people - if any- notice your head/eye exercises as you walk....and what if they did? 

Jim

[sunfish]

I'm scheduled to go for vestibular testing end of this month.  I'm a triathlete (swim, bike, run).  The bike part hasn't gone so well for me this year - I've just stayed off it for the most part because my balance is bad enough with both feet on the ground!  When I run, I feel like someone's sliding the ground around under my feet.  I don't do too bad, but it's slow going.

I'm frustrated, because neurosurgeon seemed clueless about what my vision problems could be.  He referred me to neurologist.  And an opthalmologist, who says it neurological. Neurologist doesn't even consider this could be related to AN.  ENT says, "That's not because of the AN."  All of these opinions, with no testing whatsoever, other than the eye exam. In the meanwhile, I develop balance problems.  After lots of reading on the internet, I have my primary care doc refer me to our local vestibular disorders expert.  We shall see, but I sure have lots of classic symptoms.  Not sure it's nystagmus (my stepson has that, I know what it looks like), but I'm betting I have some sort of eye movement/tracking problem.

Balance problems are also a real pain, but I try very, very hard to stay active.

Oops, I think I just hijacked this thread - nanramone, glad to hear you found vestibular therapy helpful.  I've done physical therapy for lots of other problems, and won't hesitate to try it if the docs think it will help.