Post-Treatment > Balance Issues

Balance Issues Post Radiation: severe, moderate, light or none?

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Freelander:
Mlamb thank you for sharing your very complex story, your ongoing balance issues are heartbreaking and I hope someday they diminish.   I am having a second opinion in NYC with Dr. Kondziolka next week to talk about radiation, and will post his response to my questions regarding post radiation balance issues here.   Your suggested docs at UPMC have also been on my list.   May I ask if you also had a chance to meet them before choosing NYU?  Is that why you suggested them?

Notaclone13, good call.  My AN started out at 6 mm 2.5 years ago, and is now 12 mm.   Yes, I too would love to hear more stories about post GK, CK, or proton radiation balance issues from other AN warriors. 

Good to hear from BradL.   I am curious about the length of time (8 months) it took for your balance issues to get much better.   Is that considered a normal amount of time?   May I ask where you went for treatment and who your main doctor was?

Hope to hear from others and enjoy that Florida sunshine angielina! 

BradL:
8 months is not unusual for symptoms to get better.  I think the process can take even more time.  In addition to a numb face I had a wonky head and would sometimes lurch a bit from side to side when trying to walk a straight line.  All of that is now completely behind me.  Some how the body compensates.  I think visual input compensates for damage to the balance nerve.

I had GK at Providence Gamma Knife Center in Portland, Oregon.  Of course, it is not a high volume center for treatment of ANs.  But I received great care from Dr Harold  Kim and Dr Matthew Solhjem.

If you are interested in CK or GK you might want to consult with Dr. Steven Chang at Stanford. I did not go there.   But he has a great reputation and is highly experienced. .

Mlamb:
I mention UPMC because Dr. Lunsford trained Dr. Kondziolka so perhaps he is a just bit better- however, Dr. K has an incredible reputation, it’s just nobody can really predict how your tumor will react. All the doctors that I have spoken to who have viewed my scans say it is highly unusual for these tumors to react this  way. I thought I’d mention Dr. Gardner because he does a lot of minimally invasive approaches and is probably the best at them. He’s has great outcomes. I’m not sure if your tumor is a good fit for minimally invasive but he said mine would be perfect for an approach coming through the crease of the eye. Being that this is my third time trying to attack this tumor, I don’t feel comfortable doing something that is fairly new. I would also consider sending your scans to Dr. Chang at Stanford. He does phone consults and has not only a great reputation but he is honest. He told me for my case I am in good hands with Dr. K and he didn’t see an advantage to traveling to CA. BEST of luck to you. I think you will like Dr. Kondziolka he does a ton of these and truly most people do really well.

Freelander:
As referred in an earlier post, I finally met with Dr. K.  For me, that experience reinforced the benefit of an in person meeting when talking about any medical issue.   He did refute the notion that microsurgery may be statistically better for preserving one's balance than radiation.  There just aren't enough definitive studies about the pros and cons, and likely that it will be many more years, since only 3000 AN cases turn up on average every year.  If one has a growing tumor, his advice is to treat, since tumor growth can further stretch an already stretched nerve, and likely exacerbate balance and hearing issues.  When I mentioned that my lifestyle includes extensive physical activity, he said that was a good thing, and can only help with neutralizing additional pre and post balance issues.   Yet, no guarantee.   He  thinks GK is better than CK, yet in the right hands both are equally effective. Then again, one can not over emphasize that we are all different, and how a treatment effects one of us may not be the same for the other.   It seems the best we can do pre treatment is to read credible studies and clinical investigations,  engage with others who have AN, such as on this ANA site, meet with and ask questions from licensed medical experts, and know your disease and personal symptoms very well.   Stay optimistic whatever your chosen path.
 

kkc:
Hi there,

I had GK two years ago for an AN approximately 1.5 x 1.5 x 2.0 -- at age 60.  I had slight balance issues beforehand.  Following GK (and I cannot remember how soon afterward or for how long) I experienced some crazy balance issues when I attempted to walk in the dark.  I was staggering & almost fell.  Never noticed it during the day.  It resolved itself and I would say I now have very slightly worse balance compared to pre GK.  I sometimes can't walk a perfectly straight like and cannot balance on one foot for over 45 seconds.  I don't think I could pass a roadside sobriety test, haha. 

I just hired a personal trainer & he said my balance is pretty typical for the folks he sees my age.  I enjoy walking and hiking and Pilates - so I do work on balance in those activities.  I have tried riding a bike since GK but it took a lot of concentration.  No falling, though!  I truly believe that if I worked more on my balance I would improve.  That's one reason I hired the personal trainer.  I think I could've benefitted from some physical therapy for balance but my dr didn't think I needed it.

One last thought - there's a very active and large Facebook group simply called Acoustic Neuroma - which might be a good place to ask your question.  I find it a supportive and encouraging group without a lot of drama. 

Best Wishes,
Kay

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