I woke up on Tuesday morning the first of June, 1999, to a numb feeling in
my feet. I figured it was nothing, just that I slept wrong. I got dressed
and drove myself the 45 minutes to work in Santa Rosa, CA. I arrived at work
at about 7:15 that morning and the numbness had traveled a little farther
than my ankles. I work in a mortgage company and am on my feet all day. By
about 11:00 rolled around, my legs were numb up to about my knees. It was
then that I decided that I had better call the advice line at the hospital.
I described my symptoms and they said that I should probably come in to
be seen. I decided to finish up some work, so I didnıt have as much to do
the
next day. I left work at about 3:30, having numbness up to just below my
hips, and drove myself the 45 minutes back to my local hospital in San
Rafael, CA.
I arrived in the emergency room at about 4:15, and again described my
symptoms. They told me to take a seat and the triage nurse would me right
with me. The nurse said that she thought that I just may have pinched a
nerve and that I should go home and come back for a 6:30 appointment in
urgent care. I let her know that I didnıt think I could drive any farther
since I was having trouble feeling the peddles. She decided to have me stay
instead.
At approximately 4:45, a nurse took me back to a room, followed shortly
by one of the E.R doctors. He ran a bunch of tests consisting of hot and
cold, pressure, muscle control/resistance, pin pricks, reflexes, cotton
swabs and vibration. I could move my legs fine, feel the hot and cold,
reflexes were fine, but I couldnıt feel sharp or dull (cotton swabs). After
running these tests, he said that he would like to talk to the neurologist
and would be right back. I figured that he would just tell me to go home and
rest and take a day or so off my feet. He came back in about 10 minutes and
said he wanted to run a spinal tap and thatıs when the realization of a real
problem hit.
They did the spinal tap and decided right then to admit me into ICU. To
make sure that I was not holding any residual, they had me urinate and then
inserted a catheter. Luckily, I wasn't holding any, so they took it out
within 5 minutes of insertion. They had told me a couple of options that it
could be, everything from transverse myelitis (TM) to Guillian Barreı
Syndrome. As they were getting me prepped and ready to send up to ICU, they
then allowed me to call my parents. The only thing that my parents knew is
that I was going to emergency because my legs were numb.
I arrived in ICU and they got me all hooked up to the EKG, IV (for the
steroids) checked all my vitals, and had the respiratory therapist come in
to check my lung capacity. My parents arrived at about 7:30 with my
contacts, brush and magazines. All the stuff a 21 year old needs. :-) The
doctor came in and spoke with my parents and explained to them what was
going on and what the recovery process will hopefully be. They also gave me
some Vicodin and Valium, so I could get some sleep.
In a way, it felt ridiculous to give me Valium, since they were waking
me up every 2 hours to check my vitals. My temperature was running good,
usually 98.2 to 99. My lung capacity gradually grew with time. It generally
was around 3.08 or so. They also decided that since I was taking the
steroids I should also check my blood/glucose levels. Within taking the
steroids, or eating, it almost always jumped to about 180. Occasionally they
would give me a insulin shot, so it didnıt get to high. I never got over 190
the whole time I was there.
The next morning, Wednesday the 2nd, when I awoke, I was happy because
I had slight feeling from my toes to my knees, so they decided to move me to
5th floor.They had set up a MRI appointment for 1:00 that day, so I had
something to look forward to for the day. Half way through lunch (pizza,
apple juice and milk) the EMTs showed up with the stretcher to get me. The
MRI building is across the parking lot (total of one mile), but due to
insurance reasons, they have to take you in an ambulance both ways. The MRI
took 2 hours. They first took pictures of the cervical and then the thorasic
spine area. After the first set of pictures, the anesthesiologist came in
and inserted a dye of some sorts into my IV and then they redid the
pictures. The dye supposedly makes things clearer. The EMTs then took me
back to my hospital room.
When I got back from MRI, the doctors came to see me again. I now had
no feeling from my toes to about an inch and a half above my belly button.
They were going to send me home Thursday, but since it had progressed
farther up my legs, they said no. They were still checking my blood/glucose,
vitals, and lung capacity, but has taken me off the EKG when I moved from
ICU. At least since I was not in ICU, I could use the phone, have friends
over and walk to the bathroom without help. I never totally lost muscle
control, so I could stand.
The food was amazingly pretty good. Omelettes, French toast, or
pancakes for breakfast. Pizza, chicken, or pork for lunch and chicken,
spaghetti and the like for dinner. I had plenty of friends and family come
by to keep me company, so that kept me from going insane. I made and
received plenty of phone calls, and just tried to keep my hopes up, knowing
nothing about TM.
Thursday they brought me a walker, so that I could get up and walk
around the hospital since I couldnıt feel the floor. Later that day, they
transferred me to a cane instead. Thursday was was mainly a day of recovery
and to see how my condition progressed. They dwindled on the 2-4 hour checks
and instead were running the tests 2 times a day with steroids in the
morning and blood/glucose 3 times a day.
Friday morning after my steroids the doctor came in and told me that
today was the day I would be released! Yeah!!!! The numbness and tingling
was now about 3 inches above the belly button and I was having pretty bad
spinal tap headaches, but with Vicodin and not moving around to much, those
are livable. As I was getting ready to leave, I decided to count my puncture
wounds, 1 last time. Letıs see... 3 blood collections, 2 IVs, 1 anesthesia
before spinal tap, 1 spinal tap, 7 blood/glucose checks and 3 insulin shots.
Thatıs a lot! Iım sure not as many as some, but for me, thatıs a lot.
I have a follow up appointment for a week after discharge with one
doctor, and another appointment with another doctor in 2 1/2 weeks after
that. Iım not allowed to drive for 3-4 days, or until I can feel the
peddles, and canıt go to work for at least a week. I was told that we will
discuss the driving and work situation, when I go to the first appointment.
I have been discharged for 2 days and am really beginning to feel like my
legs are stiffening up. I guess I need to do some more walking and moving
around.
I hope in some way my story helps those reading it. Whether it is
family and friends trying to understand what I went and am going through, or
people that have been diagnosed. Either way, hold your head high and just
remember that nothing is worth giving up on. ³Happiness is wanting what you
have, not having what you want.²
Jeny Rostoni
jenyr78(AT)mindscape.com