Post-Treatment > Balance Issues

Balance

(1/2) > >>

Anne S B:
Almost two years out from Cyberknife therapy.  Tumor responded well, but the patient (me) is having more balance/dizziness now than I did following surgery.  Is this normal?  I thought at first it might be a sinus thing, but now I'm 95% sure it's the post surgery effect.  I read that radiation stays in the tumor for at least two years, possibly longer.  Anyone have the same experience?  Is there hope?

Echo:
Hi Anne,

I had GK. My neurosurgeon told me to expect that symptoms including balance issues, could come and go during the first two to three years post treatment as the AN swells and shrinks while it reacts to the radiation.  I suspect you are going through a normal post treatment phase, but why not touch base with your neurosurgeon and discuss what's going on.  I'm almost 2 years post GK, and still have some wonky balance days, but I can link mine to barometric pressure changes.   I have also read that it can take up to three or four years before we really know where we are at after radiation due to how slowly the treatment works.   Hope things improve soon for you!

Cathie

Anne S B:
Thanks Echo.  Believe it or not it is reassuring to know that I am not the only one with this problem.  I've had other health issues in the past, but oddly enough my acoustic neuroma has done more to transform my life than any of them.  I feel incredibly lucky to have been in the hands of good surgeons and radiologists at Johns Hopkins, but I never expected, nearly two years out, to continue to feel so weird.  The fact that I also have ICE, a rare eye disease, and have lost most of my functioning eye sight in one eye, only adds to my distress.  I shall continue to be hopeful.

arizonajack:
Yes, Anne, there is hope. I'm 2 1/2 years post GK. My balance issues (the lurches) resolved pretty quickly within a short time after GK.

I did have some help from a vestibular therapist and kept on doing the exercises at home.

You might look into vestibular therapy as an option.

Echo:
Anne, you are definitely not the only one and you are in good company here!

Check out the following website, it is the personal account of Francesco who had CK.  www.myacoustic.org.   I think you'll find his journey very interesting.  He has documented his decision making process, treatment and recovery spanning several years.  When I used to have a few difficult days, I would think of his journey and remind myself that I was just having a "blip" and things would settle down again - and they usually did!

Cathie.

Navigation

[0] Message Index

[#] Next page