Author Topic: Balance  (Read 4057 times)

Anne S B

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Balance
« on: August 03, 2015, 09:19:58 am »
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

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Re: Balance
« Reply #1 on: August 03, 2015, 10:11:20 am »
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
Diagnosed: June 2012, right side AN 1.8cm
June 2013: AN has grown to 2.4 cm.
Gamma Knife: Sept. 11, 2013 Toronto Western Hospital
Sept. 2014: 1 Year post GK, AN reduced to 1.8cm.
Sept. 2016: 3 Years post GK, AN 1.8cm remains stable. Life is good!

Anne S B

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Re: Balance
« Reply #2 on: August 03, 2015, 11:46:00 am »
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

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Re: Balance
« Reply #3 on: August 03, 2015, 12:18:56 pm »
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.
9/21/16 12mm x 7mm x 5mm
3/23/15 12mm x 5.5mm x 4mm
3/13/14 12mm x 6mm x 4mm
8/1/13 14mm x 5mm x 4mm (Expected)
1/22/13 12mm x 3mm (Gamma Knife)
10/10/12 11mm x 4mm x 5mm
4/4/12 9mm x 4mm x 3mm (Diagnosis)

My story at: http://www.anausa.org/smf/index.php?topic=18287.0

Echo

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Re: Balance
« Reply #4 on: August 03, 2015, 06:45:46 pm »
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.
Diagnosed: June 2012, right side AN 1.8cm
June 2013: AN has grown to 2.4 cm.
Gamma Knife: Sept. 11, 2013 Toronto Western Hospital
Sept. 2014: 1 Year post GK, AN reduced to 1.8cm.
Sept. 2016: 3 Years post GK, AN 1.8cm remains stable. Life is good!

campbellmerlin

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Re: Balance
« Reply #5 on: September 17, 2015, 03:28:10 pm »
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

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Re: Balance
« Reply #6 on: February 13, 2017, 11:10:38 am »
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.
Diagnosed left side AN 5/27/15

 


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