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StephN · 10-17-2006, 07:14 PM

... can REALLY mess with our heads! No - this is not just a '60's expression, it is "for real!"

Your symptoms sound more scary than mine prior to surgery. I really had none either before Gamma Knife or with the necrosis. And - if I recall the position of your tumor - you will not have the dreaded post-op fluid problem from work in the posterior fossa (like me and Jojo).

And only with the surgery will anyone know for sure what is causing the increased enhancement and edema. Sorry you have to get friendly with the Decadron again. At least with my surgery last week, there was no need for anything like Decadron since they were not going past my brain covering.

My neurosurgeon told me (as well as my Gamma doc) that it is RARE to have ALL radiation necrosis causing the problem. (Hubby told me that we already knew I was "rare.")

If your surgery is not down on your neck (like mine has been), you should be fine for moving around and doing things. It is the Decadron that will bother you the most.

Will be waiting to hear some good results from you, Brave One.

10-17-2006, 07:14 PM	#20
StephN Senior Member Join Date: Nov 2004 Location: Misty woods of WA State Posts: 4,128	This cancer ... ... can REALLY mess with our heads! No - this is not just a '60's expression, it is "for real!" Your symptoms sound more scary than mine prior to surgery. I really had none either before Gamma Knife or with the necrosis. And - if I recall the position of your tumor - you will not have the dreaded post-op fluid problem from work in the posterior fossa (like me and Jojo). And only with the surgery will anyone know for sure what is causing the increased enhancement and edema. Sorry you have to get friendly with the Decadron again. At least with my surgery last week, there was no need for anything like Decadron since they were not going past my brain covering. My neurosurgeon told me (as well as my Gamma doc) that it is RARE to have ALL radiation necrosis causing the problem. (Hubby told me that we already knew I was "rare.") If your surgery is not down on your neck (like mine has been), you should be fine for moving around and doing things. It is the Decadron that will bother you the most. Will be waiting to hear some good results from you, Brave One. __________________ "When I hear music, I fear no danger. I am invulnerable. I see no foe. I am related to the earliest times, and to the latest." H.D. Thoreau Live in the moment. MY STORY SO FAR ~~~~ Found suspicious lump 9/2000 Lumpectomy, then node dissection and port placement Stage IIB, 8 pos nodes of 18, Grade 3, ER & PR - Adriamycin 12 weekly, taxotere 4 rounds 36 rads - very little burning 3 mos after rads liver full of tumors, Stage IV Jan 2002, one spot on sternum Weekly Taxol, Navelbine, Herceptin for 27 rounds to NED! 2003 & 2004 no active disease - 3 weekly Herceptin + Zometa Jan 2005 two mets to brain - Gamma Knife on Jan 18 All clear until treated cerebellum spot showing activity on Jan 2006 brain MRI & brain PET Brain surgery on Feb 9, 2006 - no cancer, 100% radiation necrosis - tumor was still dying Continue as NED while on Herceptin & quarterly Zometa Fall-2006 - off Zometa - watching one small brain spot (scar?) 2007 - spot/scar in brain stable - finished anticoagulation therapy for clot along my port-a-catheter - 3 angioplasties to unblock vena cava 2008 - Brain and body still NED! Port removed and scans in Dec. Dec 2008 - stop Herceptin - Vaccine Trial at U of W begun in Oct. of 2011 STILL NED everywhere in Feb 2014 - on wing & prayer 7/14 - Started twice yearly Zometa for my bones Jan. 2015 checkup still shows NED 2015 Neuropathy in feet - otherwise all OK - still NED. Same news for 2016 and all of 2017. Nov of 2017 - had small skin cancer removed from my face. Will have Zometa end of Jan. 2018.