Author Topic: Been watching and waiting for 5 years now!  (Read 11350 times)

sunny

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Re: Been watching and waiting for 5 years now!
« Reply #15 on: July 17, 2015, 12:58:18 pm »
Hi saloman,

I'm sorry about your AN, but glad that you found this forum. There is invaluable advice and experience here. I agree with PaulW, that you might want to look into radiation. I found the site myacoustic.org instrumental in choosing my treatment and my doctor. Please listen to the two interviews posted there. I wish you all the best and hope you keep posting.

To MG: I just wanted to let you know that the CK "mask" does not tightly cover your mouth or eyes. When the mask is made, the material is soft and warm, and the folks that made my mask actually tore holes in the plastic webbing where my eyes and your mouth were. They also pulled it away from my nose to give it space :-). When I wore the mask for my treatment, I could choose to open my eyes or not (I peeked occasionally). Mouth-breathing would be a good question for the technicians! I had 3 thirty minute treatments during which I could feel nothing. For me, the mask and multiple treatments were a better choice than a headframe and single treatment. Rodneyd explains it well. Best of luck to you.

sunnny
Right side A.N.  (11 x 9 x 5)
Symptoms -- 2/18/15 sudden partial hearing loss and constant tinnitus
Diagnosed -- 4/24/15 by my ENT with MRI
Treatment -- 6/17/15 first of three CK treatments @ Stanford with Drs. Chang and Hancock
Treatment Completed! -- 6/19/19

rupert

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Re: Been watching and waiting for 5 years now!
« Reply #16 on: July 17, 2015, 09:29:47 pm »
The GK machine can only be used for treatments to the head.  A frame is attached to you,  and the frame is then attached to the MRI unit and the also GK machine.  It is impossible to move your head even if you tried.  The CK machine can treat other parts of the body besides the head and has built in software to compensate for slight movement,  although the mask pretty much eliminates movement.

MG

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Re: Been watching and waiting for 5 years now!
« Reply #17 on: July 21, 2015, 09:06:20 am »
Thank you sunny! That makes me feel better if I decide on CK! I wish I lived north where I could go to Chang.

Thank you rupert for the info on GK/CK.

MG :)
Resides Inverness, Fl.
Diagnosed w/ AN tumor Aug 2013  9x5x6mm
 2016  1.3 CM Touching Brain Stem 
'Wait and Watch' is over. w/ symptons of tinnitus along w/ ear pain and pressure most every day. Will be having Cyber Knife in June 2016

rodneyd

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Re: Been watching and waiting for 5 years now!
« Reply #18 on: July 27, 2015, 09:13:42 pm »
Hi MG,

The openings are more like "slots" than "holes".  There is plenty of space to breath through, so should be no worries there. It is better to me than having the Halo placed on my head with screws in my skull.

Good luck, no matter what.

Rod 
74year old male, 8.3x7.3x6.5 mm AN on 10-28-13.  MRI on 12-30-13 showed no growth.  Imbalance issues and mild tinnitus.  MRI on July 13, 2014 showed no growth.  Still on W & W and taking baby-aspirin regimen.  MRI in July, 2016 show slow growth (1.1 cm).  MRI on July 24, 2017 was 8.2 x 8.6 x 8 mm!

rupert

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Re: Been watching and waiting for 5 years now!
« Reply #19 on: July 28, 2015, 03:27:44 pm »
I think if you search way back into the forum archives there are threads showing off their masks.

MG

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Re: Been watching and waiting for 5 years now!
« Reply #20 on: July 29, 2015, 05:55:12 am »
Thank you rodneyd & rupert for the info. Much appreciated!

MG
Resides Inverness, Fl.
Diagnosed w/ AN tumor Aug 2013  9x5x6mm
 2016  1.3 CM Touching Brain Stem 
'Wait and Watch' is over. w/ symptons of tinnitus along w/ ear pain and pressure most every day. Will be having Cyber Knife in June 2016