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StephN · 10-10-2006, 06:29 PM

Hello Survivor Sisters and their caregivers -

Got the call this afternoon that my insurance has agreed and my surgery is the day after tomorrow - Thursday. I will appreciate any and all forms of prayers/positive energy. (My radar will be on HIGH!)

This surgery is necessary as a result of my brain surgery last Feb. that was checking for tumor regrowth. Good news was that there was NO tumor regrowth, only radiation necrosis lighting up on the scans. Bad news was that a pinhole leak developed allowing my cerebral/spinal fluid to leak forming a fluid pocked under my scalp at the back on my head. (Medical name for it is Pseudomenengocele.) This is essentially like having a water balloon under your scalp that is slowly filling drop by drop. It is quite full now, but still hidden under my hair.

After meeting with brain/neuro specialists, I have settled on one who uses some newer methods and materials for a better success rate. He also does several of these repairs every month.

So, here I go again, with another 4-day hospital stay as I will also have to have the Lumbar Drain to keep the fluid level in check while the initial healing takes place. Also increases the chances of successful outcome.

My new med onc says she has never seen something like this in her patients. Seems that this problem is seen more in patients with brain tumor primaries. It is mainly a result of the location of the "tumor" (which had been killed by Gamma Knife) they wanted to get out.

10-10-2006, 06:29 PM	#1
StephN Senior Member Join Date: Nov 2004 Location: Misty woods of WA State Posts: 4,128	Surgery is finally scheduled Hello Survivor Sisters and their caregivers - Got the call this afternoon that my insurance has agreed and my surgery is the day after tomorrow - Thursday. I will appreciate any and all forms of prayers/positive energy. (My radar will be on HIGH!) This surgery is necessary as a result of my brain surgery last Feb. that was checking for tumor regrowth. Good news was that there was NO tumor regrowth, only radiation necrosis lighting up on the scans. Bad news was that a pinhole leak developed allowing my cerebral/spinal fluid to leak forming a fluid pocked under my scalp at the back on my head. (Medical name for it is Pseudomenengocele.) This is essentially like having a water balloon under your scalp that is slowly filling drop by drop. It is quite full now, but still hidden under my hair. After meeting with brain/neuro specialists, I have settled on one who uses some newer methods and materials for a better success rate. He also does several of these repairs every month. So, here I go again, with another 4-day hospital stay as I will also have to have the Lumbar Drain to keep the fluid level in check while the initial healing takes place. Also increases the chances of successful outcome. My new med onc says she has never seen something like this in her patients. Seems that this problem is seen more in patients with brain tumor primaries. It is mainly a result of the location of the "tumor" (which had been killed by Gamma Knife) they wanted to get out. __________________ "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.