Balance issues after GK

[Nancy Drew]

I had GK on 10/21/08.  I had no balance problems pre-GK and none until a couple of months ago.  A balance test in Jan. said my balance nerve was compromised at 5% with normal being between 0-20%.  Got the results back yesterday from the balance test done the end of July, and the nerve is now compromised at 71%.  I have good hearing in my ear (no loss after GK).  My balance problems are running into door jams, occasional vertigo, off balance when turning fast around corners or looking over my shoulder, a few falls and walking like a drunk sometimes.  The doctor wants to take a conservative approach at this time with the hope that the nerve doesn't get any worse.  I can live with it the way it is now (although it is frustrating and bothersome), but if it gets to where the problems interfere with the quality of my life, he suggests injecting the nerve with gentamicin to kill the nerve which would allow the other nerve to take over.  Just wondering if any GKers or CKers have faced this situation.  Sort of bummed because I was doing so well and now this.  Any info would be helpful.  Thanks.  Nancy

[jps311]

Hi, I had my GK in FEb. 09 and at the 6 month mark i have fond that my balance has been a issue. Same as you i seem off balance and get a lot of different things going on. My Dr. has told me this is the time i will be experiencing this issue. ITs not comforting because i struggled with just havign the surgery to get rid of it. But can't change that and he said this could take a year to go away. I haven't had the balance test but may ask about it. He did prescribe soem steriods for me and they seem to work a little. I just have to understand that this was one of many side effects that could have happened. I hope you feel better soon. I understand what you are saying. If they give me something else that works i will post it.

Paul

[Nancy Drew]

Hi Paul,

Thanks for your reply.I am still in a bit of shock after yesterday's doctor visit.Like your doctor, mine also said things might show up around 6-8 months, and I am about on track.I need more info so I might go back for another doctor's visit and take my husband along next time.I think my doctor said my balance won't get any better (in other words, I think he said it will stay around the 70% range).Maybe he said I would learn to deal with it better.I'm not sure.Hopefully someone will chirp in here.I do find if I really concentrate I do pretty good with the balance issues.But, if I get lax, then I'll have some trip ups.I used a trek pole when hiking a very rugged trail last weekend, and I did pretty good.I'm not sure if I could have made it without it.I am scared to hold babies for fear that I will trip.Just crazy stuff that I didn't think I would have to deal with....especially since I have been doing so well.I was more worried about losing my hearing, and it hasn't been an issue at all.This balance thing just creeped up.I hope you have better results with your balance issues.Let me know what you come up with.

Nancy

[Sefra22]

Hi Nancy,

I have experienced the same things you described, except that I have never fallen down.( Well, once but there was ice) I sometimes have to sit down to put on my pants, pause a little when I go downstairs, or basically just be a little more aware when only one foot is on the ground.

I had my balance evaluated a few months ago, and found that it was worse than I thought. (I don't remember the numbers). I don't think it impacts my life too much, I can walk on cobblestones and in sand, I just have to be a little bit more focused than a person without balance issues. I work on my feet all day, and no one would ever be able to tell I had any issues. Unless....I turn into the door jam, what IS it with those door jams? 

Lisa

[Nancy Drew]

Hi Lisa,

Thanks for sharing.  It is interesting to see how people have learned to deal with the balance problems.  I find that if I concentrate on my walking, I do pretty well.  It seems when I'm least aware, I trip all over myself.  Sometimes I can laugh about it, but then I also get frustrated that I can't take my balance for granted anymore.  I didn't have any problems with balance before GK.  I was worried about losing my hearing with GK, but I have kept it all.  And, I have fairly good hearing so that is good.  I'm still satisfied with my decision to have GK.  I just know that there are no guarantees with how these ANs are going to react to radiation or surgery.  And, what's done is done anyway. 

Nancy

[GRACE1]

Nancy,

Good to hear from you again, but I am sorry you are having the balance problems.  Here's hoping it will get better - don't give up on it.  You went through so much making your treatment decision.  I am so glad you don't regret getting GK. 

Take care and keep us updated.

Grace

[sgerrard]

Hi Nancy,

I run into door jambs, or did until I learned to cut them a wider berth, which I now do automatically. I think I am giving them lots of room, and it is odd that I still skim them pretty close sometimes, but I have just adjusted how I navigate doorways and it is not an issue anymore.

It sounds like the nerve is headed to extinction on its own, which should work out well as your other side makes the adjustment. The gentamycin is a fairly drastic measure, and could compromise or destroy your hearing on that side, so I would consider that a last resort, and give it a year or two before considering it. I'm sure it is a nuisance, but I bet that if you stay active (and a little careful), you will make the adjustment and not have to do anything about it.

MaryBKAriz has spent a year making this adjustment after CK, and would tell you that she is doing better now. For some reason, it is never simple to get over an AN.

Nice to hear from you, anyway.

Steve

[Jim Scott]

Nancy ~

I'm delighted to learn that you've retained your hearing and I trust your imbalance issues will abate in time without taking any drastic measures. 

Frankly, I doubt anyone with an acoustic neuroma, no matter how it's addressed (radiation or surgery, even endoscopic surgery) comes through the experience completely 'unscathed'.  I didn't.  Oh, my surgery went well - no complications - and so did my FSR.  I had a rapid and rewarding recovery but I'm still deaf in one ear, my balance isn't quite 100% and I have a few small 'reminders' of my AN and the surgery.  None of these are life-altering, just a slight nuisance and something I've adjusted to - but could certainly do without.  Even so, I consider myself blessed.  Like Steve and others, I have to concentrate on my walking  a good deal of the time.  When I do so, I'm fine.  I can walk up or down a flight of stairs rather quickly without using a handrail - but I have to think about it.  If I don't, I need the handrail - that sort of thing.  I very rarely bump into doorjambs - but it has happened.  Darn things just jump into your path.  It's a mystery how they do that.    However, as time goes on (my surgery and FSR were 3 years ago) I've gotten better and thankfully, no vertigo - ever. 

I'm glad you're relatively sanguine regarding your decision to go the GK route.  It seems to have worked out well for you.  You did have a lot of stress while choosing a treatment so I'm pleased to learn that now, even with your balance issues, you're still pleased with the results and don't have any real regrets, which are useless, anyway.  Thanks for the update - and may your balance improve with time, as I'm confident it will. 

Jim

[GM]

At my last MRI follow up, my doctor had a few interns with him and he was showing them tests to check balance on patients such as us.

He had me hold my head still and I was following his finger back and forth...  (my AN is on the left)...  when he moved his finger all the way to the left and sharply centered it, my eyes reacted normally.  When he did the opposite my eyes "shuffled" very quickly and then tracked the finger when he stopped it suddenly.  He said that was normal for those of us with balance issues.  (I have lost 90% balance on my left side but my brain has since compensated).

He did another test where he had me stand heel to toe, hands at my side, and close my eyes.  I was just to stand like that as long as I could.  Again my AN is on the left...I eventually tiltled to the AN (left) side, and eventually lost balance.  He had me continue....I then tilted to the right (non-AN side).  He again said that this is normal for balance patients...the first "lean" is for the balance loss...and the second "lean" to the non-AN side is for over-compensation..  Pretty interesting tests..

[Nancy Drew]

Thanks to all of your for your replies.  Just wondering if any of you didn't have balance issues before treatment and then they surfaced after treatment.  I really didn't have any AN issues before treatment, except the psychological aspects of accepting I had it, then figuring out if I should get treatment, and then what kind of treatment I wanted to have.  I was so happy to retain my hearing post GK since that was something I really worried about.  Never ever thought balance would be an issue.  I am still confused about what will happen from here on out.  Will my balance get worse (more that 71%) or stay the same?  Is there anything I can do to make it better....like yoga or vestibular therapy?  I don't have a lot of dizziness, and I wonder if that is something that will come up.  When I have my MRI in Oct., will it show the balance nerve?  I'm sure there are more questions I will have to ask later.  I am just curious as to "why now" since I haven't had any balance problems in the past.  Thanks for all of your help.  I don't feel so "alone" with this issue any more.  And, Steve, you are right about those injections.....not going to even consider unless I get to the point where the balance issues get worse and it affects my quality of life.  My doctor said last resort, also.  Especially since I have such good hearing.

Nancy

P.S.  I have a bit of OCD, and I find that I am obsessing about the balance issues all the time, it seems.  Hopefully that will go away with acceptance and time.

[Jim Scott]

Nancy ~

My balance sharply deteriorated in the 6 months prior to my AN diagnosis.  Following my surgery, it improved, with work (mostly walking, a few exercises).  Now, three years out, I seriously doubt anyone would know that I had 'balance issues'.  As I mentioned, I have a few minor balance deficits, but nothing life-altering or that endangers me in any way.  I'm fine on a ladder or going up and down stairs, etc.  If I happen to stumble, which is rare, I do have some difficulty regaining my balance without grabbing hold of something, but this is hardly a problem.  I trust that you'll surmount these balance problem with time and some work on your part, if needed.

Jim

[Nancy Drew]

I think I am already starting to figure out some of the things to keep on top of the balance issues.  I notice that my hand seems to skim the wall or the object I am walking around.  I am trying to look ahead in front of me more often instead of looking off to the side too much.  I also notice that I look at my feet more often when I'm walking.  We have wood stairs in our house and after many falls, I have a system set up so I don't fall any more....hold on to the handrail and count the steps.  I guess you just have to learn the little tricks.  Yesterday I went on a five mile walk with a friend, and I did really well....concentrated and didn't take anything for granted.  I feel sad that I am having to learn these "tricks", but I don't have any other choice.  Thanks to everyone for sharing their little "tricks".  It is helpful.  I think I am accepting this issue a little bit better today.  It could be so much worse.  Nancy

GM:  How did you find out you lost 90%  on your left side?  Did you have an EMG?

Steven:  Didn't you say you had some balance issues that came up during a balance test that you weren't aware of?  My doctor said he would be more worried if I lost a significant amount of balance in a short period of time.  Looks like I went from 5% to 71% over a six month period. 

[sgerrard]

Nancy,

I did have balance testing done about 2 months before treatment. They said I had a small amount of nystagmus when lying on my right side - that's where your eyes beat back and forth. Also that a reflex in the neck was weak on the left side (the AN side), indicating the tumor was probably on the inferior branch of the vestibular nerve.

I have not noticed any change in balance since then. I have a slight wobbliness when slipping on gravel or missing a step. If I don't get my weight right the first time, the recovery is slower than it used to be. And rotation seems to also produce a little mis-step, hence the walking into door jambs effect.

I would think the doctor meant really fast loss, like losing 50% overnight or something. Six months seems like a gradual reduction rate to me. I think you are very likely to learn a few more tricks (which will soon become second nature) and adjust to this change just fine. No more walking on logs over stream beds, though.

Steve

[ppearl214]

Hey Nancy,

Great news on the hearing retention and I'm sorry to hear about enhanced balance issues. I've heard about the injection but can't think of who (or is that whom?) had it done post-radiosurgery...........  You are also at the point with post-radio that things may crop up, so I'm not utterly surprised that things (side affects) may be enhancing.  The key is that there is no enhanced growth of the bugger and that the hearing is hanging in there.  Others here are offering terrific words about the balance and if you do the injection, please keep us posted as to how you are doing.  It will be terrific to have your take on it as it may help with guiding others down the road if they are researching it as well.

As always... those healing hugglez coming your way.  Hang in there and please keep us posted.

xo
Phyl

[mk]

Nancy

I don't know much about balance issues, never had them. My ENT explained that probably my AN side  balance nerve has been destroyed very slowly over the years, fiber by fiber, and the other side has taken over.
My understanding is that since the AN is still there it will continue affecting your vestibular nerve. What has probably happened is that radiation accelerated this process (remember, the nerve has been hit by the radiation as well, and probably blood flow to it has been reduced). Given that the rate of the destruction is much faster than before radiation, your other side hasn't had the chance to compensate, thus the balance issues that you have been experiencing. Hopefully the other side will  catch up and compensate if you give it enough time. From what I have seen from other people, vestibular therapy helps too sometimes.
Hang in there, and hopefully this problem will resolve soon.

Marianna