Caution:
The picture below is rather gross, so you
have been warned.
Some of my fellow
collectors on the C&R-FFL discussion list have been privy to my long
struggle with a inoperable 'Intra-dural, extra-medullary epidermoid tumor'.
That is to say, a vienna sausage sized tumor inside my spinal column, growing
through and around (and intractably attached to) the nerves in the T12-L2-L3
region of the spine.
Symptoms began at the age
of 26. Correct diagnosis and initial surgery began at the age of 30. That
surgery consisted of exploring the tumor, cutting it open and sucking out the
insides to relieve pressure on the nerves. It became apparent during that
surgery that the outer layer of the tumor was firmly attached to many nerves.
Removal w/out paralysis was impossible. I awoke from the first surgery
incredibly pain free, and able to walk unassisted for the first time in a
year. I left the hospital two days after surgery.
4 days later I was back. a
105F fever, violent nausea and bowel movements and growing incoherence. I was
rushed to the hospital. They ripped out the stitches while I lay there w/ nothing
for the pain, probing the wound for a source of the problem. w/in twelve hours,
I lapsed into a coma that was to last 1.5 months. The culprit? MRSA
This nastly little bug put
me in a coma, lungs filled w/ fluid, swelling so badly my skin burst and
peeled off in sheets, on 24hr dialysis, insufficient oxygen to the brain
("Aha!" said my wife, "That explains soooo much about
you!"). I flatlined twice. I woke up looking like a concentration camp
survivor, muscles so atrophied I could not even swallow. (ever had swallow
therapy?!) The wound was not sewn back up, but left open to heal slowly from
the inside out. This picture was taken about 2-3 weeks after my release from
the hospital. Believe it or not, I did not feel a thing when the nurse came to
my house to wash it out w/ alcohol and repack it twice a day. It took several
months to fully close. Look closely, you can see the white bones of my spine
in the upper portion.
Since this first ill fated
surgery I've had two more. It seems that the tumor grows swiftly enough to
pressure the nerves every 18 months, necessitating more surgery.
My most recent surgery does
hold out hope to eliminate the 18 month cycle I seem to be in. I went to the
James Cancer Hospital at Ohio State University and consulted w/ several
doctors and researcher. Normally this type of tumor does not respond to
radiation. However, the decision was made to apply radiation directly on the
tumor while I was under anesthesia on the operating table, followed by 6 weeks
of external radiation. I've now passed the 18 month mark w/out a return of
symptoms. Only time will tell if it just bought me extra time of eliminated
the problem.
