Author Topic: Balance improvement translab or Gamma knife  (Read 4091 times)

pcurry

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Balance improvement translab or Gamma knife
« on: April 14, 2017, 01:37:15 pm »
Recently diagnosed 2.5 cm with symptoms of hearing loss and balance issues.  I've ridden dirt and mountain bikes for 20 years.  I would like to do Radiation because of the less invasive nature, but willing to do surgery if my balance ultimately improves to prediaganoses levels.

Would appreciate hearing from anybody who had balance issues when diagnosed and what percentage their balance recovered after radiation or translab surgery?
 

ANSydney

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Re: Balance improvement translab or Gamma knife
« Reply #1 on: April 15, 2017, 01:31:45 am »
From what I can gather, balance does return. Not because your vestibular nerve is better, but because it is no longer giving varying signals. Look up central compensation to learn a bit about how the brain can operate with only one vestibular system. This is the case regardless of treatment; surgery, radiosurgery and observation. There is however a period of time after surgery to relearn.

Tumbleweed

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Re: Balance improvement translab or Gamma knife
« Reply #2 on: April 16, 2017, 02:14:31 pm »
Hi, Pcurry:

I had horrible balance before getting CK (CyberKnife) treatment: Vertigo attacks and oscillopsia (check it out on Wikipedia, if you don't know what oscillopsia is) for years, along with general disequilibrium and "wonky-head" on relatively good days. Since getting CK, my balance has recovered around 97%, subjectively, and I am able to do virtually all the outdoor sport activities I could before. My doctor, Steven Chang, thought my improvement was due to my tumor eventually shrinking after my treatments (after first swelling in reaction to the radiation), thereby putting less pressure on my balance nerve. Just be aware that not everyone who gets CK has an improvement in balance. YMMV.

Good luck, and best wishes,
TW
L. AN 18x12x9 mm @ diagnosis, 11/07
21x13x11 mm @ CK treatment 7/11/08 (Drs. Chang & Gibbs, Stanford)
21x15x13 mm in 12/08 (5 months post-CK), widespread necrosis, swelling
12x9x6 mm, Nov. 2017; shrank ~78% since treatment!
W&W on stable 6mm hypoglossal tumor found 12/08

JLR

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Re: Balance improvement translab or Gamma knife
« Reply #3 on: April 16, 2017, 03:43:01 pm »
Before and after CK balance 100% perfect. After retro sig surgery balance zero! 5 months of physical therapy it's much better maybe 85% and expect it to get better. Good luck.

pcurry

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Re: Balance improvement translab or Gamma knife
« Reply #4 on: April 30, 2017, 08:36:29 am »
I want to thank everyone for replying.  Fractional radiation early may will follow up on balance issues as I progress.

Echo

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Re: Balance improvement translab or Gamma knife
« Reply #5 on: May 02, 2017, 08:19:31 pm »
My an was 1.8cm when diagnosed but grew to 2.4cm when finally treated with GK.  I had very mild balance issues prior to GK, but about 6 months post GK when the AN started to swell my balance issues became really bad.  I can quite honestly tell you for about 1.5 years I struggled with balance and ocular motor issues.  At the 3 year post treatment point last Sept., I was pretty much back to normal, just the occasional wobble. 

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

Freelander

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Re: Balance improvement translab or Gamma knife
« Reply #6 on: February 05, 2018, 05:19:37 pm »
pcurry....  did you follow through with the radiation?  How was your balance?  We would appreciate hearing your story.   

notaclone13

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Re: Balance improvement translab or Gamma knife
« Reply #7 on: February 06, 2018, 08:36:29 am »
Pcurry has posted post-radiation followups on other threads. Is now 7 months post radiation and is experiencing some eye twitching. Tap on the name and choose see all posts option.

EMOC

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Re: Balance improvement translab or Gamma knife
« Reply #8 on: July 24, 2019, 11:44:35 am »
I had GK 3 years ago and TL last November. My balance is ok for the most part. Feel unsteady when I stand up rapidly. This was the case even before my GK. My AN was 2.5 cm when I did GK, was 4 cm before the TL.

I can get on small ladders no problem. Haven’t ridden a bike. Coached little league for a few seasons. I walk a lot and lift weights.

Freelander

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Re: Balance improvement translab or Gamma knife
« Reply #9 on: August 31, 2019, 09:17:15 am »
I had GK 3 years ago and TL last November. My balance is ok for the most part. Feel unsteady when I stand up rapidly. This was the case even before my GK. My AN was 2.5 cm when I did GK, was 4 cm before the TL.

I can get on small ladders no problem. Haven’t ridden a bike. Coached little league for a few seasons. I walk a lot and lift weights.

Hi,
How would you describe your balance symptoms: prior to GK, then after GK alone, then after surgery?   If you don't mind, where did you have your GK done?

jami

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Re: Balance improvement translab or Gamma knife
« Reply #10 on: September 02, 2019, 02:23:14 pm »
Hi,

I had balance issues for ages - I stumble or seem tipsy easily. In yoga class I really struggled with any balance move and stood in back to avoid being that person. Turns out that my schwannoma was growing on my balance nerve, which was removed during surgery.Never had vertigo, just poor balance.

I am now 1 year post surgery and am doing better with balance than I had before surgery.

I did vestibular PT post surgery until they told me to stop coming, walked 5 miles every day for 12 months and did a lot of yoga at home.  (Struggling with Plantar Fasciitis now, the price i pay for the walking i guess, and balance issues are coming back as it hurts to walk so one of my senses (the feel from the foot) is not playing it's role.

Jami
Jami
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5/17/18: 2.7 x 2.2 x 2.1cm
8/12/18 right retrosigmoid craniotomy @UNC
8/15/18: 1.0 x 0.4 x 0.4 cm
3/04/19: 1.0 x 0.8 x 0.5 cm
4/23/19 Cyber Knife treatment