Author Topic: Stop the merry-go-round I want to get off!  (Read 2438 times)

Heresrose

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Stop the merry-go-round I want to get off!
« on: March 07, 2014, 08:05:41 pm »
It will be three years post-op in November. This week my MRI showed signs of AN growth (2mm)😞. My doctor is talking radiation. I am somewhat in shock. Trying not to think about it until I sit down with him and he reviews last years versus this years MRI. I am concerned that radiation will further weaken the left side of my face.

Anyone out there have the same experience and went forward with radiation? How was the outcome. Could really use some advice right now.

Thanks,

Rose
3.2 x 2.1 x 1.5 partially removed via Translab on 11/28/11 w/Friedman & Schwartz of HEI, SSD, facial nerve intact but have facial paralysis and synkenisis.
3/4/14 MRI shows 3mm AN growth.
AN now is 1.7cm
4/11/14 CK Stanford with Drs. Chang and Gibbs

Tod

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Re: Stop the merry-go-round I want to get off!
« Reply #1 on: March 08, 2014, 11:09:32 am »
18 months post surgery, regrowth or continued growth of the bit left behind was confirmed. From there we scheduled 28 sessions of FSR. That was two years ago, so far there have been no problems. Next MRI is in less than two months.

Good luck,

Tod
Bob the tumor: 4.4cm x 3.9cm x 4.1 cm.
Trans-Lab and Retro-sigmoid at MCV on 2/12/2010.

Removed 90-95% in a 32 hour surgery. Two weeks in ICU.  SSD Left.

http://randomdatablog.com

BAHA implant 1/25/11.

28 Sessions of FSR @ MCV ended 2/9/12.

Heresrose

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Re: Stop the merry-go-round I want to get off!
« Reply #2 on: March 10, 2014, 10:09:25 am »
Thanks for responding, Tod. Is FSR via Cyberknife? My doctor mentioned Gamma Knife. How did you choose one over the other?

Rose
3.2 x 2.1 x 1.5 partially removed via Translab on 11/28/11 w/Friedman & Schwartz of HEI, SSD, facial nerve intact but have facial paralysis and synkenisis.
3/4/14 MRI shows 3mm AN growth.
AN now is 1.7cm
4/11/14 CK Stanford with Drs. Chang and Gibbs

Tod

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Re: Stop the merry-go-round I want to get off!
« Reply #3 on: March 28, 2014, 07:21:05 pm »
I'm sorry to come back to this so late. I missed your post. FSR - Fractionated Stereotactic Radiation.  I chose it because it what is offered at the hospital I had my original surgery at and thus allowed my neurosurgeon to be involved very easily, which he wanted. Plus the radiologist is his treatment partner there and the local VA hospital.

For me it was about keeping with a trusted team.

-Tod
Bob the tumor: 4.4cm x 3.9cm x 4.1 cm.
Trans-Lab and Retro-sigmoid at MCV on 2/12/2010.

Removed 90-95% in a 32 hour surgery. Two weeks in ICU.  SSD Left.

http://randomdatablog.com

BAHA implant 1/25/11.

28 Sessions of FSR @ MCV ended 2/9/12.