Author Topic: New Diagnosis  (Read 3845 times)

mroker

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New Diagnosis
« on: October 04, 2016, 12:05:13 pm »
Hi guys, I have been diagnosed a few days back and my AN is pretty large, 3.0cm. I got referred to Dr.Lansby in UM and he recommended open surgery. He said this needs to be done promptly but I cannot get  an 'evaluation' until the 11th. I also called to set up an appointment with Dr. Slattery so hopefully will have a phone consult soon. Is surgery only an option when the AN is too big? I really was hoping he said he can do the Cyber Knife.
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.

caryawilson

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Re: New Diagnosis
« Reply #1 on: October 12, 2016, 11:57:06 pm »
The main problem with radiation is that the tumor typically "expands" in the process of dying.  This expansion can be deadly in the case of a large AN.  The one worry is that it cuts off the ability of the cranial fluid to circulate as a result of pressing on the brain stem.  It really depends how the tumor may be impacting this circulation today.  Since all AN are unique it's hard to give you a definitely answer if yours is too big for radiation.  Get a couple consults and you will know more. 
4.5 cm, 17.5 hour modified retro surgery
John Hopkins: Lim / Carey
Complete Facial Paralysis
Facial Plastic Surgeon (amazing): Dr. Boahene

Tod

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Re: New Diagnosis
« Reply #2 on: October 13, 2016, 06:28:45 pm »
Yes, pretty much. If the tumor is too big and in the wrong place for radiation, surgery is what is needed. Not really much choice other than hope that it doesn't get bigger.

-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.

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Highwireart

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  • AN is small. Surgery is 11/30/16. Out damn spot!
Re: New Diagnosis
« Reply #3 on: October 22, 2016, 02:13:59 pm »
Tod, you named your tumor, "Bob"!   ;D 

I call mine "Spot".

Out damn spot on Nov 30th!

Cheers!
"It's always something." ~ Gilda Radner

Tumbleweed

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Re: New Diagnosis
« Reply #4 on: October 23, 2016, 02:56:45 pm »
3.0 cm probably rules out CK, but it depends on the tumor's exact location and whether the 3.0cm measurement is along the transverse axis or not. (If not, then it may not be impacting the brainstem yet.) It wouldn't hurt to ask Dr. Steven Chang (worldclass CK practitioner) for his free advice: sdchang@stanford.edu.

I also vaguely remember a medical facility on Staten Island, NY, that sometimes treats larger tumors with another form of fractionated radiation (not CK). It might be called "Staten Island Hospital." Perhaps other forum members can remember the place I'm thinking about.

Best wishes,
TW
L. AN 18x12x9 mm @ diagnosis, 11/07
21x13x11 mm @ CK treatment 7/11/08 (Drs. Chang & Gibbs, Stanford)
21x15x13 mm in 12/08 (5 months post-CK), widespread necrosis, swelling
12x9x6 mm, Nov. 2017; shrank ~78% since treatment!
W&W on stable 6mm hypoglossal tumor found 12/08

mroker

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Re: New Diagnosis
« Reply #5 on: October 24, 2016, 07:34:21 am »
Thanks for your suggestions guys. I am going with House and I am scheduled for the 8th of November. I was debating between them and Keck but after speaking to Schwartz decided to go with him. It was a tough decision, but just went with the gut. 3.0 cm definitely is too big for radiation according to multiple doctors. Will send results when I'm done!
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.