Chronic balance problems following CK or GK?

[amye]

Hey again all you veterans;

Has anyone with prior balance issues (i.e., prior to treatment) had chronic balance-related problems following radiation?  I don't mean at the 6-month mark, but a year or more out? Mine are primarily vestibular-ocular (vision stability problems due to nystagmus). Things have improved greatly over the past couple of months (I have apparently been compensating), but I still have minor issues every couple of weeks.  I have little kids to take care of so this is a BIG concern for me with radiation. In fact, this is my greatest fear with this treatment option, and the major issue that's keeping me from being able to make a decision and LEAP.

I understand that surgery would adress this by cutting the vestibular nerve, but there are of course other risks there...

Thanks,
Amy

[ppearl214]

Hey Amy

Keeping in mind that an AN can affect the balance nerve, it is all part of the AN journey overall.... so, some here have reported balance issues.... some don't. I have balance issues from other medical issues as well, so I can't fully elaborate on my experiences, but based on my medical issues and what my balance was prior to radio (CK) and post-radio, my balance issues have remained at the approx same level.

Hope this helps.
Phyl

[amye]

Thanks Phy! I guess what I'm really asking is if anyone has not "compensated" adequately. It is my understanding that as the nerve is destroyed/damaged by the tumor, the other side (and central nervous system) compensates for the loss. Over time, there should be failrly complete resolution. We will never be competely normal because we are now changed, but it shouldn't be a struggle anymore. This is also the case following surgery, when the nerve on the AN side is cut.

Then there's this issue of "faulty signals" from the partially functioning side, and the brain staying in a chronically confused state. THAT is my worry. (That is also what those recommending surgery for me say that scares me the most!). My major reason for choosing surgery would be to cut that nerve and have the 'faulty signals" stop. However, many people seem to have long-term balance issues after surgery, too!   

So my question is really thus: Has this chronic, long-term balance nerve problem actually ever happened to anyone following radiation? Or do things eventually resolve?

With gratitude,
Amy 

[sgerrard]

Amy,

My impression is that lingering balance issues have occurred for a few radiation patients - Sher and MaryBK come to mind. There are others who had some balance issues before treatment and immediately following, but which cleared up in the first year, as well as those where balance has not been a major factor.

The fact that "things have improved greatly over the past couple of months" suggests to me that you would fall in the group that has issues that clear up over time, not the persistent ones. It is hard to be sure, but if you are adapting well already, there is no reason to think radiation would change that. Radiation seems to be almost balance neutral, neither helping nor hurting it.

If you haven't already, you might consider getting a full workup at a vestibular lab. It is less expensive than an MRI, and they can give you a more objective view of what balance function you have now, and what you can reasonably expect to happen going forward.

Happy hunting,

Steve

[amye]

Thanks Steve. That's a great idea and I've been working in that direction...I think it's why I've gotten so much better! I had a VNG a couple of months ago and learned that I'm at abut 50% on my AN side. I've been doing vestibular exercises and that seems to have helped alot. The therapist is very helpful but has generally steered me away from any treatment -- I think because she mostly sees patients with problems after treatment, she may be biased against it (she also does facial retraining and such...sees alot of ANers).

Even with my improvement, I still have very "wonky" days. I can manage, but its not the quality of life that I'm accustomed to. I'm very active and healthy and I would REALLY prefer not to have to deal with blurry vison, vague dizziness, etc. on a regular basis for the rest of my life.  Would surgery "fix" this? The docs at House tell me so, but then I read of post-surgery folks falling over in their gardens (I problem I DON"T have) and having other disequilibrium issues, and I don't want that either.

I am in the thickest of the quagmire of my decision-making process, and I'm really struggling. Thanks so much for your valuable input. 

Amy

[Sefra22]

Hi Amy,
I think I am as "compensated" as I am going to be. I have accepted that I will never wear stilettos or walk heel to toe. Last weekend I walked all over Boston's cobblestones, climbed on rocks at the shore, and even went to a Pink Floyd laser show. I know these thing would have bothered me 2 years ago. I had a period of time were I had some vertigo,but haven't had an attack since. I still have some "wonkyhead" in Wal-mart and big supermarkets, but it's not enough to stop me from going there.

Lisa

[Tumbleweed]

Hi, Amy:

I think it's a crapshoot whatever type of treatment you choose. Like Steve said, some people suffer from worse balance after radiation (or surgery), while others improve. Someone on our forum (I can't remember who) recently posted that Dr. Chang told her that 1/3 of CK patients notice an improvement in balance post-treatment.

For me, CK has been nothing short of miraculous. My balance is much better now than it was before getting treatment (although it was about 15-20% worse for a few months immediately after treatment, during which time my tumor swelled). Subjectively, my balance is 50 to 70% better than it was immediately before treatment and better now than it has been in the past 9 years. I still have mild disequilibrium (especially when I get tired from lack of sleep or overwork), but it is rarely a distraction any more.

The body has an incredible ability to heal itself, even if not completely. What I worry about procedures like translab is that the vestibular nerve is removed. Once it's gone, you can't get it back. And some people have had bad balance problems after having their vestibular nerve removed. Now, before I get any hate mail, I want to stress that many people have had translab and had no balance issues whatsoever afterwards and their surgeries were very successful and the best treatment choice for them personally. I'm just pointing out that the removal of a body part is permanent. To be fair,  a friend of mine knows someone who had radiation for an unspecified brain tumor and they've had horrible balance ever since. The hardest part about choosing a treatment plan that is best for you is that it's impossible to divine the outcome.

I think it is terrific that you are very active. That will help your balance no matter what type of treatment you have. I am an avid outdoorsman and swear that all my hiking over uneven ground is the best vestibular therapy I could possibly do (although Stoneaxe would undoubtedly give me a run for the money with his standup paddleboarding    ).

There will always be stories of worst-case scenarios to find if you look hard enough. For your peace of mind, please try to focus on the most likely outcome from a statistical standpoint. The fact that you're active and healthy will probably put you in that group of people who recover the fastest and the most after treatment.

Best wishes,
TW

[sher]

Hi Amy,

I had CK approx 9 months ago.. I had increased balance problems for the first 6 months and it is getting progressiviely better. I would recommend CK to all I can, as my tumor is slightly smaller at this point and showing necrosis (death). I could not of wished for a better outcome so far. The body does compensate. Let me know if I can help in any way,
Sher