Kathy Jo,
I got a baclofen pump two years ago (almost exactly) and the surgery was
quick, relatively pain free, and the pump has worked well for me.  My
doctor kept me in the hospital for a week afterward to do some in-patient
rehab, which was really good for me, because I had to re-learn some
transfer methods, since I'd been depending on my spasticity to do some of
them.  Like you, the test dose worked really well; I was able to open my
left hand farther than I'd been able to in years.

My wife also has a pump (going on 7 years for her); she had hers replaced
last spring when the battery finally gave out.  Janet had a little bit
rougher time with the surgery, in that she got nauseated, and had a pretty
bad headache afterwards.  Those are both known side effects of the surgery,
so she knew it might happen.

One thing I'd suggest is that you make sure the doctor you're having put it
in has good, recent experience with pump surgery.  When Janet had her test
dose done the first time, the doctor wasn't very good at it, and it was
unsuccessful.  Her neurologist basically said the doctor who did the test
dose screwed up, so we went and saw a different surgeon, who did the test
dose differently, and it showed that it would work.

Did you go to Madison for the test dose and (potential) surgery?  If so,
that's great because the doctor who did some of the best work with pumps
recently relocated there from the University of Pittsburgh (PA).  The
doctor who did Janet's pump and mine trained under him, and then went on to
do some of the better research on pumps and people who have dystonia
(involuntary movement in a limb or the neck, that's a little different than
traditional spasticity).  That's Dr. Albright, and so the people he has
taught should be good, too.

Let us know what's happening with it.




On Fri, Feb 28, 2014 at 11:25 AM, Kathy Jo Pink
<[log in to unmask]>wrote:

> If anyone has had Bacofen Surgery , would you please tell me about it?
>
> I have had the trial and it was fabulous!  I can, now, open my left hand
> (which I couldn't do before).
>
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-- 


Kendall

An unreasonable man (but my wife says that's redundant!)

The reasonable man adapts himself to the world; the unreasonable one
persists in trying to adapt the world to himself. Therefore, all progress
depends on the unreasonable man.

-George Bernard Shaw 1856-1950

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