prognosis

[sharma]

Jack, do you mind telling me who your surgeon was at Columbian Presbyterian? I have a second ependymoma, this time S-1 and am looking at all surgeons per order of my family, even though I had a good outcome from the first.

[sharma]

Hi, all. 2001 ependymoma L2-3. Numbness, pain, sciatica. All pretty chronic with a host of meds to battle.
Pain fluctuates and sometimes able to walk quickly with full sensation, when tired or in pain, the leg drags and is wooden and or/ painful.
DOes anyone recall posting a body of research about the new guidelines for NOT biopsing epednymomas while in the body? NOt taking a frozen section because of the chance of a "drop mass?" I read it here somewhere. I know have a recurring ependymoma, S1, considered a drop mass. Sharma

[elham]

whats the end of ependymoma story?

[elham]

tell me exactly about ependymoma grade II (tanicytic ependymoma)

[Melissa]

last october an MRI found an ependymom in the c2-t1 section inside my spinal cord. first surgeoun turned me down but as a 38 yr. old, with all faculties in tact he gave me a surgeons name, DR. Robert Spetzler in Phoenix Arizona that specializes in "critical cases" aren't they all???

All NS's i saw were optimistic but All Diagnosis/Prognosis were preceded by the word "percieved" as it all depends on what they find when they get in there. The bottom line was that it had to go - one surgeon told me my kind of tumor makes him want to retire, and onother refferred to it as a ticking time bomb. It appeared to be encapsulated but we werent sure. My my tumor was not biopsied until day of surgery and it was benign. Radiology was out due to placement of the tumor (intrmedullary high in the spinal cord)and its size. We were told by several of the Neurosurgeouns we consulted prior to surgery that it appeared to be encapsulated but very large. (encapsulated is good) Compressive and not infiltrative. (this is good) But again, any surgery in this highly critical area of the spinal cord risks paralysis, quadraparalysis, or death. But hope for the best, eh???

I saw the video of my surgery and they opened me up (took out 4 of my vertebrae) and scooped out the middle, then scooped out the top then bottom. It looked like a gray jelly-like clog. I have titanium plates and screws holding me together but have full neck rotation. Numbness around the scar and achey pain in neck and lower lumbar where I had a lumbar drain placed 1 day after surgery to control spinal cord leakage out my incision. i take neorontin 3x 600mgs. And Fflexiril at night for spasms and to help sleep. NUmbness and tingling in my right hand, buttock outside to right side of my leg and right pinky toe. With time i will be able to re-learn all life skills around these crazy "sensation" issues. So I am told.

I am job hunting (relunctantly) becasue i am low on finances and have been house for the last 7 mos. at my parents. Craving my independance but scared to go out into "the Economy".

Help!

[scoutsox]

elham - were you diagnosed with Grade II tanacytic ependymoma? I was - surgery was July 17, 2009. Tanacytic is very rare! What's your story?