Re: Baclofin pump....info wanted
AZMAINIAC (AZMAINIAC(AT)prodigy.net)
Fri, 21 Aug 1998 14:25:43 -0700
Patricia,
In Dec. 1971 I was hospitalized for with TM. I walked out 3 1/2 months
later with crutches. I progressed fairly well except my bladder.
in 1988 I started gong downhill and was back in a wheelchair due to
spasticity. My legs were so tight I could stand up for a couple of minutes
before pain would set in.
In June of 1989, I was in a double-blind study for the pump. I was the
first in Phoenix. On July 17, 1989, my first pump was implanted. The second
was May, 1984. The battery lasts 3-5 years.
It reduced the spasticity to where I could walk short distances with a
cane. It also helped the bladder to where I stopped using adult diapers. I
do have an accident now and then, but it is my fault because I am not
paying attention.
here are two abstracts about the results of the blind-study.
Go to:
http://www.ncbi.nlm.nih.gov/PubMed/
Type in SHETTER AG and when the results come up, look down through and you
will see "intrathecal baclofen' look at that abstract.
Do the same for HERMAN RM. When you look at the abstract, you will see
TMy(n=2). I am the 1st of the 2.
Here is a sight that gives a fair overview of the pump.
http://www.wemove.org/spa_itb.html
I have to strongly disagree with their statement, "Some patients have been
able to halve dosages of their medications without any increases in
spasticity."
The patients must be on an awfully low dosage. I am currently getting
1.26mg per day or 52.5 micrograms per hour. I get my pump filled every 19
days. I know there are some people who get a higher dosage, but not very
many.
If you have any questions, feel free to ask.
John
----------
> From: Patricia Joslin <pjoslin(AT)webtv.net>
> To: TMIC-list(AT)eskimo.com
> Subject: Baclofin pump....info wanted
> Date: Friday, August 21, 1998 8:20 AM
>
> Saw my physiatrist yesterday as I am in the process of titratng down my
> Baclofin dosage and up onto Zanaflex for my spasticity . I am having
> great difficulty with being so sedated and still having poor control of
> the spasticity. He discussed the Baclofin pump as a possible answer and
> I am wondering if anyone out there has had experience with one. I am
> paralyzed from T-5 down and am having trouble with transfers and ADL's
> because of being so stiff. My husband does good range of motion for me
> 2x day. I am almost 1 year from initial TM .
> PatJ