Author Topic: Downside and upside re surgery  (Read 5320 times)

JLR

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Downside and upside re surgery
« on: October 12, 2016, 04:47:56 am »
Here's a question. What would happen if I don't have the surgery. It's Joan here. I'm scheduled for a retro in NYC next month. Tumor is 2.6 2.7 2.1. Close to brain stem Leaning on trigeminal nerves. On meds for that pain. Will it continue to grow. Just want some opinions out there. Thanks much, Joan aka JLR

Tod

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Re: Downside and upside re surgery
« Reply #1 on: October 12, 2016, 08:51:57 pm »
Every case is different, but it seems likely it will keep growing. A lot of factors are involved and it may take a long time. Ultimately it depends on your willingness to wait and watch until you have no choice but to have surgery. What have your doctors said?

-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.

JLR

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Re: Downside and upside re surgery
« Reply #2 on: October 13, 2016, 02:41:55 am »
Thanks very much. Your comments helped by saying I might have no choice re surgery eventually. I will have the surgery. Thanks again.  Glad your doing well. JLR

feline

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Re: Downside and upside re surgery
« Reply #3 on: October 13, 2016, 06:07:11 am »
Good luck,
Feline
Walnut size AN removed on June 30 2014 at Stanford with Dr Chang and Dr Blevins facial paralysis, no blink ,no hearing but otherwise feel good otherwise

JLR

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Re: Downside and upside re surgery
« Reply #4 on: October 13, 2016, 04:04:56 pm »
Thank you Feline. Glad your feeling good. JLR

Tod

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Re: Downside and upside re surgery
« Reply #5 on: October 13, 2016, 06:23:36 pm »
JLR, have you consulted about radiation therapy? Your tumor size is close to the nominal boundary, but it is worth a consultation if you really don't want surgery. But even then, you might not have a choice ultimately. I had surgery first, was told I had 3 to 6 months to get it done or ultimately face coma and death, and two years later had radiation. My tumor is deep along the brainstem and right on the artery. It was difficult enough to remove the 90% or so that they could within 32 hours, and it started growing again measurably.

If I had caught it earlier when it was closer to the size of yours, I doubt that I would have delayed.

Best of luck to you,

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.

JLR

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Re: Downside and upside re surgery
« Reply #6 on: October 14, 2016, 05:30:26 am »
Hi Tod, Had radiation in 2010. Had CK.  but this xxxxxxxxx radiated tumor started to re grow slowly and is now leaning on the trigeminal nerve causing awful pain. On meds for that. I tried to get it radiated again but turned down as it would swell and cause additional not so good problems. Even sent my scans to Dr. Chang at Stanford who concurred. Thanks much, Joan

sharonov

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  • 1.7 X 1.3 X 1.1. Retro sigmoid at House, Schwartz
Re: Downside and upside re surgery
« Reply #7 on: December 03, 2016, 08:49:02 am »
By now you should have had your surgery.  Please post as to how you're doing.  Your tumor is larger than mine (mine is now 1.7 x 1.3 x 1.1) but since mine is also pressing on the trigeminal nerve I'm having it out.  I just posted about the exact date and am doing mine in L.A. at the House.  I hope your outcome was good.

mroker

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Re: Downside and upside re surgery
« Reply #8 on: December 12, 2016, 02:01:43 pm »
I've just had mine done on November 8th by Slattery and House. Mine was 3.0cm and although technically I had a choice of radiation, it definitely was not recommended. Mine was pushing on the brainstem as well. My face is numb still , but fully functional, and I am now driving again, no balance issues, and no fatigue. House is great.
3.0cm x 3.0cm x 3.0cm
Translab by Dr. Slattery & Dr. Schwartz HEI 11/8/16
Can move face fine but numbness currently.