Author Topic: Surgery after Radiation  (Read 2375 times)

saratrehan

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Surgery after Radiation
« on: March 17, 2022, 11:25:34 am »
Hello all,
I am in the unfortunate, very very small, camp where i had RS surgery in July 2018 with Dr. Sisti at NYP, Gamma knife for regrowth in Jan '20 (also at NYP) and as of my Feb 2022 scan, my tumor again appears to be growing. It is measuring 2.5cm. I am choosing between UCSD and NYU to do my surgery ( I am based in NYC myself).  Both teams have recommended I do translab surgery as a different approach and angle for the tumor. I have already lost hearing on my right side from the first surgery. I am trying to minimize facial paralysis risk, but need to be aggressive with tumor removal. Wondering if I should stay local (NYU team is very highly reputed) or fly to UCSD (where the team is very reputed as well). I know it's all about the hands and the outcomes! Any insights or advice on the teams, or how to go about choosing would be helpful! Thank you, Sara
DX May 2018 - 29x24x27
RS Surgery - DR. Sisti NY Presbyterian July 2018. 95% Removal. SSD, Tinnitus, Facial Numbness, Severe Dry Eye
June 2019 - Stable 17x14x14
Dec 2019 - Rapid Regrowth - 21x25x17
January 29 2020 - GK NY Presbyterian Dr. Sisti & Dr. Wang

donjehle

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Re: Surgery after Radiation
« Reply #1 on: March 17, 2022, 06:20:04 pm »
First of all, Sara, I want to thank you for posting your experience.  I find your story quite inspiring even though what you have gone through and are going through is terrible!  I cannot imagine needing to have your AN treated three times!  But I admire your courage through it all.

As you stated, both UCSD and NYU have great reputations.  From what little I know of both places, I really don't think you can go wrong at either place.  Since you live in NYC, it seems like it would be a lot easier for you to stay right there.  UCSD is great, but I don't know if they would be that much better than NYU to merit the trip to California -- unless you wanted to enjoy the west coast for a little R & R.

Maybe some of the others can post their experiences from both places.

Best wishes on your upcoming surgery!
Don
Burning Tongue, Loss of Hearing & Balance, and Tinnitus led to MRI. Very small AN found on 11/23/2021
While watching and waiting, lost significant hearing. WRS now at 12% (down from 100%). Was fitted with CROS system on 3/7/22.  Stable MRI on 7/29/22
No treatment yet.

bfoley

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Re: Surgery after Radiation
« Reply #2 on: December 15, 2022, 05:44:23 am »
Sara -

I sent you a PM - was hoping you were willing to share your experience.  Please LMK if you are.