Balance Issues & Radiation

[Vivian B.]

Hello Everybody,

I am not really sure how to ask this question, but from what I understand, if you do not have balance issues, chances are you won't have them after radiation treatment. However, when we speak about balance issues are we referring to actually physically being dizzy or having vertigo? I have lost 49% of my balance nerve on my AN ear but my left has compensated pretty well, I can't say that I get dizzy. I have been told, that chances are I will lose all of the balance nerve eventually during "W & W" or possibly after treatment. I have experienced it the odd day where I feel my gait is not the greatest, but I can still manage and get on with my day, or if I turn too quickly or go up escalators I find that I have to hold on to the rail. Hopefully you will understand what I am trying to say. Would anyone be able to clarify this?

Any thoughts are welcome.

Vivian

[ppearl214]

Vivian,

If the AN is sitting/positioned in relation to the balance nerve, the balance nerve is already affected pre-treatment or could be damaged by the growth's existance.  Vertigo/dizziness can enhance and is a possibility for many.  In my case, my balance was already thrown by my AN and other medical issues.... so, I walk like a drunk without even drinking.  There are those that have reported enhanced balance issues, post-radiation, since as we know, it is a potential risk in choosing radiation (or surgery, for that matter), but I also know of many that did not have enhanced balance issues (such as myself) post-radiation.

Hoping others will chime in on this with their experiences.

Phyl

[Vivian B.]

Hy Phil,

Thanks for replying. This helps a lot.

Vivian

[Sefra22]

Hi Vivian
I do understand exactly what you are saying. I was not aware I had any balance issues pre-treatment until I had my evaluation with Dr. Noren, He had me to do some simple balance tests in his office, and that's when I found out it was compromised. So that just shows how minor the balance problems were for me.  Four months post treatment, I had some OCCASIONAL vertigo. Dr. Noren assured me that it was most likely the tumor itself, and not the treatment that caused it.

I was evaluated last month by a vestibular therapist. I thought I did okay, but she has me doing some special exercises to make the nerve that's left stronger. I know that I'm not 100%, but it really isn't life altering for me at all. I work on my feet all day, and nobody would ever be able to tell that I only have one functioning balance nerve. (Unless I were to walk in a straight line heel-to-toe.....still can't do that )

Lisa

[Vivian B.]

Hi Lisa,

Thanks for replying. I am glad I am getting such good responses. I was beginning to worry. The "what ifs" were beginning to creep up in my mind.

Vivian

[Jim Scott]

Vivian ~

Good question.  

The conventional wisdom says that the longer your AN has compromised the balance nerve, the better your brain has adjusted to the altered input.  Thus, post-op, you won't have much of a problem with balance.  This was my experience.  As you know, I underwent both surgery and radiation (FSR).  My AN was large and, according to my neurosurgeon, had been there for some time.  My hearing had been lost for at least 4 years prior to my diagnosis.  Post-op, I had some slight balance issues but was stable enough to convince the PT nurse to allow me to be discharged. Once I was home, a VNA therapist put me through some balance exercises and after 3 visits, she pronounced me as  "no longer in need of her services".  I did a lot of walking and was a bit shaky on steep, uneven surfaces, so I forced myself to walk on those as much as possible.  I was fine within a few months.  3 years out of surgery and almost the same time past my FSR treatments, I can navigate stairs without the need of a handrail (up or down) and I don't have any life-affecting balance issues.  However, if I stumble its harder to quickly regain my balance, but this rarely comes up.  I judge my balance ability to be about 90% of normal and I'm good with that.    I'm sure you'll do well regaining your balance abilities.

Jim

[Vivian B.]

Hi Jim,

Thanks for replying. As you know there are always a million questions going on in our heads aside from our ANs. It's comforting to get some information and insight from everybody.

Thanks again.

Vivian

[Nancy Drew]

No balance issues before GK, but 6 months after balance nerve is compromised at 71%.  Have no hearing loss post GK.  Balance issues are bothersome, but they don't really affect the quality of my life in a big way.  I think things will even out after a while.  Still, I was surprised about the balance nerve being affected.  All this time I was worried about losing my hearing.  Best wishes.  Nancy

[Tisha]

Balance issues do not mean "vertigo" per se....they can be just a sense of unbalance, which is what I had most of the time.  I had one case of vertigo, which is bizarre.  You're just walking along, and all of a sudden it feels like a huge magnet is pulling you to the ground and you are bent over as if that is happening, ready to fall and trying not to.

Dr. Chang said that after CK, 2/3 of the patients remain the same as what they had as far as unbalance/dizziness/vertigo before CK.  1/3 get better (that would be me!) and 5% get worse.  So, the odds are in your favor that you wound't be worse...but like all these damned AN's, there is no 100% guarantee for anything.

Tisha

[Vivian B.]

Hi Tisha and Nancy Drew

Thank you for your thoughts.

Vivian

[Tumbleweed]

Hi, Vivian:

My balance was compromised before getting CK. I'd lost 71% of my balance function on my AN side from the tumor. This initially resulted in severe vertigo and oscillopsia (bouncing vision while walking). Both of those conditions gradually disappeared as my good side compensated for the damage to my vestibular nerve on my bad side, leaving me only with a sense of disequilibrium (imbalance) and somewhat frequent incidences where I would begin to fall over to one side and then catch myself (the "invisible hand" pushing me). I also had a sense of "wonky head": disequilibrium together with a sense of being disconnected from my physical surroundings. All this was before getting CK.

After CK, my balance worsened subjectively about 15% for six months, then improved rapidly. Now a little over 1 year post-CK, my balance is probably 50% to 65% better than it was before getting treatment. There is hope!

Best wishes,
TW

[Vivian B.]

Hi TW,

Thanks for sharing. I am already losing balance nerve, so I expect probably the same or similar reaction as yours.

Vivian