Author Topic: neuro opthamologist  (Read 4511 times)

Jubileejeff

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neuro opthamologist
« on: July 13, 2015, 12:55:04 pm »
I had Gamma Knife surgery on Feb. 18th and have had multiple post surgery problems.
My main concern is my vision. When I walk or drive my vision shakes as if you are shaking a camera.
Can you please help me and tell me what is happening and what can be done to get better.
I have been going to vestibular physical therapy for 6 months with no improvement.
Would you please send me a PM.


Thank you.

(Hello and welcome. Please note that I had to remove your personal email address for privacy reasons.  People are more than happy to post here or send you a Private Message/PM here on the forums to respond to you. Thank you for understanding... and again, welcome! Phyl)
« Last Edit: July 14, 2015, 05:23:40 am by ppearl214 »

LakeErie

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Re: neuro opthamologist
« Reply #1 on: July 14, 2015, 09:59:53 am »
While I did not have radiosurgery ( had retrosigmoid removal ) I did experience something similar to what you describe post surgery. When walking outside it appeared buildings and trees, even parked cars, were moving up and down or simply not stationary. I often felt like my head was moving when it was not. This persisted for 7 - 8 months. I just kept walking with head movements right and left and up and down until the problem resolved. Store aisles were especially bad, it seemed I could not focus on any items on shelves without stopping to look directly at it. Good luck
4.7 cm x 3.6 cm x 3.2 cm vestibular schwannoma
Simplified retrosigmoid @ Cleveland Clinic 10/06/2011
Rt SSD, numbness, vocal cord and swallowing problems
Vocal cord and swallowing normalized at 16 months. Numbness persists.
Regrowth 09/19/2016
GK 10/12/2016 Cleveland Clinic
facial weakness Jan 2017

Jubileejeff

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Re: neuro opthamologist
« Reply #2 on: July 14, 2015, 03:08:17 pm »
Thank you so much!

Echo

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Re: neuro opthamologist
« Reply #3 on: July 14, 2015, 06:35:16 pm »
I can't tell you why it's happening, but I can tell you I had the very same experience as both you Jubileejeff and LakeErie.  What I find interesting after reading LakeErie's post, is that this does not seem to be specific to Gamma Knife.   

I had my Gamma Knife in Sept. 2013 and by December 2013 my ocular motor issues started.  Christmas lights really made the houses bounce around.  Grocery shopping was an absolute disaster, I would get nauseous and have to stop frequently to let things "settle".  Driving did not bother me unless I tried to drive on multilane highways with lots of fast moving traffic, so I simply avoided that situation or I let someone else drive.  Walking was also a problem as nothing stayed still.   The worst of this seemed to last roughly 6-8 months and then slowly started improving.  I did vestibular exercises throughout and it is a very slow process to see improvement.  My neurosurgeon felt that the AN was swelling during this time period.  As the tumor reduced again in size so did my ocular motor issues.  If I get overtired I can still have some very mild issues with my vision when turning my head, but nothing like what it was a year ago.

I do see a neuro opthamologist on a regular basis to watch for any optic nerve problems and so far everything is fine other than some sporadic dry spots that seem to come and go on the cornea.  Hopefully you can ride this out and it will improve.  One day you just notice that nothing is moving!! I would keep your Dr. informed though so they are aware of what is happening to you.

Cathie


« Last Edit: July 14, 2015, 06:37:22 pm by Echo »
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

Julia

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Re: neuro opthamologist
« Reply #4 on: August 13, 2015, 04:06:03 pm »
Hi Jubileejeff,

I had GK in Jan 2015 (7 mos. post). I also started noticing that my eyes seemed to be dysconjugate. It feels as though they are moving in different directions and making me feel dizzy especially as I walk. I have to close my eyes and let the feeling pass. My suspicion is that the radiation is taking effect. That's my hope anyways!
Julia
8/28/14 first diagnosis: Rt med-large size
11/18/14 first neurosurgery consult
1/6/15 scheduled for GK

SXS: facial numbness, loss of taste, unsteadiness, swishing head sounds