As you all are contemplating your Baclofen doses or trial, I am waiting
for the neurosurgeon to remove my Baclofen pump.
I had my pump put in July 2006. Initially the pump worked well for
preventing spasms, but I did not know that it would prevent me from standing
or
walking, because I wasn't getting any physical therapy for a very long time.
Once I got the chance to get physical therapy, I wasn't able to stand at
all. I was like a limp noodle. No matter how hard they tried, I wasn't able to
stand, not in the standing frame nor with a walker. I had the doctor
reduce the Baclofen dose in my pump, in small increments. No matter how much
he
reduced, there was still no change.
About six months ago, my pump began to give me problems such as swelling
and tenderness to the touch. I spent two visits in the hospital within three
months, for the same problem. I was told they couldn't find anything wrong
with the pump, but each time they put me on intravenous antibiotics and
the swelling went down and tenderness diminished. This led me to believe that
there was an infection somewhere. After my pump kept swelling and the
neurosurgeon's nurse told me that the pump is a foreign object in your body,
and the body is constantly trying to reject it, and some patients pumps were
rejected totally outside of the body, I decided to have my pump removed. My
oral Baclofen was started up again, and I was weaned off the pump. I then
began to have more tone, and am able to stand better. I'm not able to walk
yet, but I have some inpatient physical therapy coming up once I get this
pump removed.
I tried once to have the pump removed but was unsuccessful. They could not
get an IV in. They tried from my feet to my exterior Jugular. Once I get
over this bladder infection, they will try again. Wish me luck.
Naomi
C-4 Quadriplegic, since July 2, 2005
Due to Transverse Myelitis
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