Author Topic: scared, worried, terrified  (Read 4193 times)

tenai98

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scared, worried, terrified
« on: September 08, 2016, 09:55:17 am »
I had translab in 2009, and tumour regrew,, so CK it was June 2016.  Before CK, I was experiencing weird sensations in my head, leading so some (but not bad) fuzzy vision, which if I closed on eye, all was good.  Also had alot of pressure at back of head.   Now fast foward to end of July 2016,  and wham, double vision for 2 hours.  It has been periodic since then, but now there is alot of pressure at front of head.   MRI done two weeks ago,  No change.  Some edema, but nothing to worry about, apparently.   Double vision almost daily now and a bad dizzy spell to go along with it.   Head feels heavy.   I feel like I'm a zombie moving in slow motion.   Balance is off,  stumbling more.  I'm terrified.  Back to see the radiologist tomorrow morning.  Hoping a change in meds will help.  now on decadron.   and up 20 lbs.  Has not been a fun summer.   I teach driver ed, and there is no way, I can go back for the new school year with double/blurry vision and dizzy spells.  NOT conducive to safe driving.   Rant done. 
14mmX11mmX11mm left ear
TRANSLAB 04/07/09 2cms at time of surgery
Dr. Benoit and Schramm, Ottawa Civic Campus
SSD ,some facial numbness
Baha surgery sept 22/09
residual tumor 13mmX7mmX8mm
2016 new growth.  25mmX21mmX22mm
cyberknife on June 7

Crazycat

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Re: scared, worried, terrified
« Reply #1 on: September 19, 2016, 03:52:23 am »
I hear ya...I hear ya (no pun intended).

Welcome to the double-vision club. You're not the only one! Hey, it took me out of the loop a long time ago. I drive as little as possible. It's very stressful for me. I have a pristine driving record and want to keep it that way!





5cm x 5cm left-side A.N. partially removed via Middle Fossa 9/21/2005 @ Mass General. 
Compounded by hydrocephalus. Shunt installed 8/10/2005.
Dr. Fred Barker - Neurosurgeon and Dr. Michael McKenna - Neurotologist.

Sheba

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Re: scared, worried, terrified
« Reply #2 on: September 25, 2016, 10:42:14 pm »

I don't know a lot of detail about the radiation options, but it seems like people do experience symptoms fluctuating for the first year (or two) after radiation -

hopefully it's just the initial swelling and will settle down soon ish?
Diagnosed 4/2016 1.4cm AN.  Mild hearing loss and tinnitus.
Removed 7/2016 at Keck, Drs. Freidman and Giannotta, Retrosig approach.  Lost hearing in AN ear, but no other negative outcomes.  Will investigate bone anchored hearing devices.

keithmac

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Re: scared, worried, terrified
« Reply #3 on: September 26, 2016, 09:33:30 am »
I hear ya...I hear ya (no pun intended).

Welcome to the double-vision club. You're not the only one! Hey, it took me out of the loop a long time ago. I drive as little as possible. It's very stressful for me. I have a pristine driving record and want to keep it that way!







I realize things are very different in the US but in the UK vision issues need to be declared.  Does your licensing authority not expect that in a similar way to our own?

PaulW

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Re: scared, worried, terrified
« Reply #4 on: September 26, 2016, 02:14:55 pm »
There are people that drive that are paraplegic. There are people that drive with no arms.
You can drive if you are deaf. You can also drive if you have coke bottle glasses, as long as your vision is corrected to read two lines bigger on the eye chart than someone with 20/20 vision.
You are allowed to drive if you are blind in one eye..
In theory if you had all of those problems. You could drive with no arms no legs, deaf, one eye, with coke bottle glasses, and be 100 years old..
10x5x5mm AN
Sudden Partial hearing loss 5/28/10
Diagnosed 7/4/10
CK 7/27/10
2/21/11 Swelling 13x6x7mm
10/16/11 Hearing returned, balance improved. Feel totally back to normal most days
3/1/12 Sudden Hearing loss, steroids, hearing back.
9/16/13 Life is just like before my AN. ALL Good!

keithmac

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Re: scared, worried, terrified
« Reply #5 on: September 26, 2016, 11:22:18 pm »
There are people that drive that are paraplegic. There are people that drive with no arms.
You can drive if you are deaf. You can also drive if you have coke bottle glasses, as long as your vision is corrected to read two lines bigger on the eye chart than someone with 20/20 vision.
You are allowed to drive if you are blind in one eye..
In theory if you had all of those problems. You could drive with no arms no legs, deaf, one eye, with coke bottle glasses, and be 100 years old..

So there's no requirement to declare a developing eye condition?