Recent Diagnosis of Transverse Myelitis
SEATZ(AT)aol.com
Wed, 30 Sep 1998 12:50:47 -0700
Help, I'm not sure if I am writing to the correct place or sending this to the
correct place. I joined the transverse myelitis association a couple of months
ago. I have received 2 newsletters so far. I Thank God everyday for the
association. My husband and I would have never made it through this difficult
time without being able to read the stories we have read. I need some help. I
will explain our story and please could anyone with help please contact us.
On April 7, 1998 my husband went into the hospital for surgery for colon
cancer. At the time of surgery he was given an epidural iv for postoperative
pain management. The surgery was on Turesday and the epidural was left in
until thursday morning. Immediately after the surgery, when my husband woke up
he told our son and I that he was paralyzed and we both assured him that it
was due to the epidural. After some time passed, the nurses and doctors kept
asking my husband to move his feet or legs. It was not possible. He was
correct. He was paralyzed from the waist down. The cancer surgery went fine,
but we were now dealing with a new problem. He spent 7 days in ICU, where they
called in a neurologist, whom asked for an MRI. The MRI showed what he called
swelling of the spinal cord at the vertebral Level T10 to L1, affecting the
distal spine including the conus medullaris. They also said there is mildly
increased T2 signal at the central aspect of the swollen dital spinal cord.
CSF elevated, and normal cytology. (Whatever all that means). They then did a
spinal tap on Saturday morning. I was the when the doctor did it and he
explained to me that the spinal luid should be crystal clear. It was. Looked
like mountain spring water to me. They sent the fluid off for further testing
and we were then transferred to a rehab hospital. Les spent 37 days there
learning how to live with paraplegia. They also had him doing two half hours
of physical therapy a day. After his release from the rehab hospital, we
continued with outpatient rehab 5 days a week for 1 hour per day. This lasted
until the middle of August., when the insurance company would no longer
provide for this. At first Les was getting small improvements sometimes daily
or sometimes weekly. We now are doing stretching excersizes at home daily, but
Les seems to think he is going backwards. Movement is slowing or disappearing.
He has braces that he was fitted for in the Rehab hospital, which he uses as
much as possible, but they are only excersize braces, not for walking. Anyway,
what my question is, is there anyone out there that knows of a doctor or
center that deals with transverse myelitis in the Garden Grove Ca. area? From
what we have read, we are starting to doubt transverse myelitis. Les walked
into the hospital and expected to walk out 4 days later. He had no symptoms
prior to this and none of the discriptions I have read about this ilness fit
his. He has feeling in most of this lower limbs, some is dulled. He has no
back pain or leg pain or spasms. Just legs that no longer work. We are just
now going for a second opinion. I am afraid that we are waisting precious time
if this is really not what is wrong with Les. Please help. Anyone.
Cheryl Stewart
Seatz(AT)aol.com