> Is your spasticity at a point where the Baclofen
> (orally) provides little to no relief?
I don't really know if it provides ANY relief. I
know I cannot take oral Baclofen. I tried it in
about three titrations. When I got up to 30 mg/day
I went into clinical depression and stopped it. At
that point I do not believe there was any relief.
I then tried Neurontin until the honcho physiatrist
[spelling? a specialist in rehab medicine] at
Dartmouth told me it was a waste of time/meds and
to switch to Zanaflex. I did so, again without yet
observing any relief from the medication I was
leaving. [A small change in sporadic spasticity is
not easy to measure in an every-day-living setting.]
I've been on Zanaflex for maybe three months. In an
indirect way, I know it works. Whenever I miss a
dose I am severely punished. Sort of like Prilosec
that way: when it is working, you are not sure; when
you skip a dose, you KNOW.
However, oral Zanaflex is not sufficient.
> If you are excessively spastic, in what
> way does it interfere with your ADL?
1 Excessive tone in the right foot inversion.
This is making me walk on the outer edge of the
right foot, not the sole. That is painful.
Coupled with weakness in the eversion muscles
[They are just now returning after eighteen
months without stimulation.], I cannot walk safely
on uneven ground. However, this may not be helped
by a Baclofen pump.
2 Waking up is Hell.
I sleep quite well on my side in a fetal curl.
After maybe 30 minutes [in the LazyBoy or at
least that in the bed], when I wake my lower
body does not want to straighten. Both legs,
but much worse in the right, want to flex at
the hip and knee. Getting them straight is
painful. If I swing up without first getting
them straight, I pay the price upon standing.
It is hard to walk in a croutch.
3 Sitting is very unpleasant.
Both thighs spasm sporadically, flexing both
hip and knee. This is annoying and very
uncomfortable, but not really intolerable.
It does affect my driving and is destroying
my computer desk --- the leg smashes up into
the keyboard shelf. I look at it this way:
I get isometric exercise all day long.
4 Urination is compromised.
If the legs spasm while I am voiding, the
flow stops and may not restart. [For bowel
reasons, I sit.]
Something, possibly bladder spasms, is
causing extreme urgency to urinate. When
the bell rings, I have seconds to respond.
Coupled together, these are a bummer. The
bell rings, I run to the toilet, I start
to go, my leg spasms, I stop, I start to
wash up, the bell rings! Give me a break.
I did not lightly decide to get a pump. I don't
like any intrusion upon the spinal canal. An
infection can cause awful damage.
I have considered and been talked out of Botox
injections. Botox is harder to reverse. It is
local, not systemic for a widespread problem.
[You better believe I don't want systemic Botox.]
Tendon cutting is worse than Botox.
I do not know for certain that a pump will help
me. But checking that is part of the protocol.
They will give me an injection of one dose and
watch to see if it helps. If not, they try one
more time with a stronger dose. If not, I'm out
of there. If either test works, they cut.
I do understand that I need refills every seven
weeks or so. Not much more troublesome than the
trips to the drugstore every month. The main
downside is the repeated risk of a bad dose or
infection.
> I get the feeling that individuals who opt for
> this procedure are anticipating some dramatic
> relief, and I've just not seen or heard this
> from folks trying it, nor is the literature
> that definitive.
It is my [undocumented] impression that four or
five people in the tmic have recommended it. I
know AZMANIAC has just had his third [battery
replacement] pump installed (John was one of the
field trial patients fifteen years ago.) I also
remember two or three saying they were not excited;
one had his pump removed. Again, no notes. I'll
look at this again this week. Thanks for the nudge.
Alton, who believes it is good to be challenged