son has transverse myelitis
CHSM(AT)aol.com
Thu, 10 Jul 1997 23:26:49 -0400 (EDT)
After several months of not being able to come up with a definitive
diagnosis, the doctors feel 90% sure that my son has transverse myelitis. He
collapsed on the floor on September 17, 1996 after complaining that he had
"pins and needles" in his buttocks. The numbness continued down his left
leg. we thought it was a pinched nerve. After two hours his right leg
became numb. He was taken to the hospital where x-rays and a c-scan were
performed. Nothing really showed up.. He was transferred to another hospital
for an MRI. By this time his bladder was full and distended and he could not
void on his own. The pain in his legs became so severe that no would could
even come close to his without him screaming that they felt like they were on
fire. A second MRI showed nothing so he was transferred to Children's
Hospital in Phila. At this point they thought it might be Guilliam Barre so
they did a spinal tap. The numbness had now travelled to just under his
breast bone (48 hours).
The results came back negative so they admitted him and put him on steroids.
Another MRI was ordered and this showed that there was an interruption in
the flow of blood to the spinal cord from T-12 down. Now the diagnosis was
an AVM, so an arteriogram was done and was also negative. At this point he
was using a foley and was able to move his right leg very slightly(6 days)
He was able to be propped to a sitting position and place in a wheel chair
for brief periods of time. After 12 days he was transferred to a rehab
facility where intense therapy began. He was on Heparin,, Hytrin and
Decadron . Eventually he received Baclofen. He also used a device called an
FES. He could transfer to a wheelchair from his bed with assistance. He
eventually gained control of his bowels( by November) and began doing pivot
turns and eventually using a walker and then crutches. They used serial
casting on his left leg because that one had the most spasticity and ankle
drop. When he was discharged in December he was able to walk with crutches
and a leg orthotic. He gave up the crutches, started using a cane and the
full orthotic was cut down to a small brace. By November he could void on
his own with using crudete, but he continued to have "accidents". Through
ultrasound and urodynamics the urologist found that his bladder was not
emptying completely so he now continues to self-catherize. He walks wiith a
limp today but without any devices. He has trouble with his balance and he
still has foot drop with his left foot. He has full strength in his right
leg but the sensory nerves are impaired. His left leg is much weaker but he
has full sensation back in that one. He still has some distorted feelings in
his mid-trunk section. He is a thirteen year old boy who has been fighting
every step of the way to overcome this. He was an avid golfer and has begun
to golf again on a very limited basis. Since the doctors aren't really sure
what happened they can't give us a prognosis. At one point they didn't know
if he'd ever walk again. Through some research I found out that certain
HepB vaccines have TM as a severe side-effect. Also certain Tetanus vaccines
can also cause similar severe reactions. He had both vaccines last August
about five weeks before all of this happened. He was healthy before this
happened. Can anyone help me? He really gets "down" at times and is looking
for someone too talk to who might be in a similar situation. Thank you so
much.