Imbalance problems with newly diagnosed AN

[Nance]

I was just diagnosed with an AN- 1 cm. and it's intracranial.  That explains my imbalance that I've been having.  My hearing is tested as normal, but I know that I've recently hearing less and less on the phone.  I'm trying to learn about treatment options and my doctor has recommended surgery.  VNG caloric testing showed 76% weakness in the left ear.  Does anyone have experience with results such as mine?  Does anyone know if radiation treatment alternatives are possible with a person with balance problems?  I live in NYC and am starting looking here- seems like surgery is the thing that most done here but I'd like to know if I can consider radiation therapy.

[Joef]

I don't see why not .. balance would have nothing to do with it .. its more location and size that determine radiation treatment.

look around .. try to relax.. (I know its hard) ... jeez - seems to be a rash of NYC people with new AN's 

[jtd71465]

Nance-

I was treated at NYU Medical Center(I live in Princeton NJ), I had surgery on 1/10/2007...feel free to contact me to discuss. 



Joe-

[sgerrard]

My understanding of the question mark with regard to balance and radiation is this: radiation treatment doesn't usually change balance one way or the other. Surgery does change it, because they usually cut the balance nerve on the affected side.

For some patients, the balance nerve goes out over time anyway, and the brain readjusts to using the nerve on the other side. I think 76% weakness suggests that you are headed in that direction already. I had caloric testing, and it showed only a very slight weakness on my AN side; the balance nerve has not been an issue for me.

There are cases where the balance nerve is out of whack, but it doesn't fade away enough on its own, which can lead to severe vertigo issues. Surgery will fix that condition by cutting the nerve; radiation won't change it. That is the situation where surgery can be a better choice of treatment.

If you are not having severe vertigo, and your balance nerve on the AN side is already 76% gone, then your brain is already making the adjustment to one-sided balance. At 1 cm, you can probably wait a little while, and see where the balance situation is headed. If you wind up readjusted to one-sided balance, then radiation is still a good choice. If you wind up stuck with nasty bouts of vertigo (the 3 hours flat on your back kind), then radiation might not be the best choice.

That's my understanding of the situation, anyway. A good place to ask doctors a question like that would be on the cyberknife forum, at http://www.cyberknifesupport.org/forum/.

Good luck with your quest,

Steve

[aardvark]

Hi Nance -

My story is similar to yours - disequilibrium was my primary symptom, and even then, it was pretty subtle at first.  Audiology test showed slight loss both ears, probably age-related, but 100 percent word recognition.  VNG and caloric tests nonconclusive, so I was sent for an MRI.  My AN was 1.5. 

I had consultations at both HEI and Stanford.  I chose CK knowing that it wouldn't improve my equilibrium, but preferred its non-invasiveness.  I wasn't bothered by the fact that the tumor would remain in my head, though this can be a major issue for some.

I reasoned that if I could halt the AN's growth, I would be willing to deal with the status quo on the balance problems.  I'm extremely pleased with the outcome.  Still walk like I'm inebriated, especially if the light is dim, or if the sun's really bright, but my coping skills have improved considerably.  Tumor is necrosing, right on schedule, so I'm a happy camper.

Wishing you well in your research -

Adrienne

[chopper]

I was just diagnosed with an AN- 1 cm. and it's intracranial.  That explains my imbalance that I've been having.  My hearing is tested as normal, but I know that I've recently hearing less and less on the phone.  I'm trying to learn about treatment options and my doctor has recommended surgery.  VNG caloric testing showed 76% weakness in the left ear.  Does anyone have experience with results such as mine? 

This is pretty much on par with how I experienced things.  Word recognition, very high, actual hearing, complete crap!   Once dx'd and as I learned, it all became clear that what I had previously attributed to being slightly clumsy and too many nights of loud music, was actually that little growth (well, big growth as it turned out).  Other than a few headaches and a "full" feeling in the head, if I hadn't taken the job I have now, which required a physical and hearing test, I'd likely be still living with thing, oblivious, or...worse...