Balance

[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.

[campbellmerlin]

Hi Anne - I am 3+ years post GK treatment. I still have very bad imbalance and occasional dizziness. Walking in a dark room or on uneven ground is really difficult.  My tinnitus is constant - I can hear it over all  other daily noises (TV, others speaking, etc). I am now pretty much totally deaf in the AN ear and one weird thing I've noticed is that I can no longer watch TV programs that include actors that have accents (British, Scottish), etc. Can't understand a word they are saying, whereas before I could. My AN ear sometimes feels full, like there is swelling, but no pain at all. I have an MRI appt. in 2 days, so I'm hoping nothing has gone wrong - like the AN is showing regrowth, etc. I hope your imbalance improves. I am having doubts mine ever will (p.s. - I'm 65 years old and had symptoms for at least 10 years before my diagnosis)

[oak1971]

More than a year out for me and still stumbling. You are not alone. I need to find the right kind of therapy, so far no luck.

[Joan Mingo]

I have just started physiotherapy for my balance and vertigo issues. The physio I do is apparently similar to someone with a concussion as you are retraining your brain to centre itself again. Hoping it works. I have a small AN and am on watch and wait. My therapist also advised walking every day if possible, especially outside as it helps with the balance with visual distractions.

[notaclone13]

Hi Anne, have you asked any of your doctors whether your lack of vision in one eye could be the reason for your continued balance/dizziness issues post GammaKnife? I believe when you have inner ear mediated balance issues, you become more dependent on your sense of sight for orientation. For example, many of us with balance issues due to our ANs tend to be more out of whack at night or in the dark when our vision is diminished. One of my first symptoms of AN was feeling totally disoriented when walking outside at night. Had that issue tonight when walking to my car in the parking lot. I made it, but felt a little dizzy and unsure of myself. Once I was in the car, I was fine. Someone on the forum mentioned using a cane for balance. I tried that one night when walking outside in the dark and it did seem to help. As a doctor explained it to me, your sense of touch also aids in balance. The cane connects your hand to the ground so it provides your brain with another point of reference.