Intrathecal Baclofen Pump:a timeline of my surgery

[aaron....@gmail.com]

Over the last three years or so my breathing has become quite
difficult. I've had several trips to the ER for breathing treatments.
My doctor believes it is due to Schwartz-Jampel Syndrome causing the
muscles around my ribcage and abdomen to become even more tight and
squeezing out my ability to breath. I am tired often since I have to
work so hard to breath. My muscles are tight and become overworked
with the least bit of activity. At one point earlier this year I was
so out of breath that I couldn't take a drink of water without panting
afterwords. In January the pump was offered as a possible solution. I
wouldn't have considered the surgery five years ago.

Trial June 25
I get a shot of Baclofen through a lumbar puncture to test its
effectiveness in reducing my overall stiffness due to Schwartz-Jampel
Syndrome. I've taken Baclofen orally but it made me loopy and
disoriented. Wow. I can tell a big change in my gait. I normally walk
in a stiff waddle but with the Baclofen I have a more normal stride. I
also seem to breath easier.

July 28
Intrathecal Baclofen Pump operation at 2:30 pm by Michael Turner.

I wake up in PCU. The pump is about the size of a hockey puck though
it is shaped more like a football. It feels like a manhole cover is
trying to escape from my guts. There are several tubes leading from
the pump to my back. I'm on my way to being a cyborg. For the next
four weeks I have to keep fairly stationary and not stretch or twist
too much.

July 30
I get out of bed for first time. Ouch. Why is it that tiny 5' tall
women tend to work in PT?

My arms seem to rest lower now.

July 31
Going home. No complications so far. The main concern is dislodging
the pump or catheter.

August 1
Start of spinal headache.

August 2
Mom said that my face looks more relaxed. My neck looks less tight to
Annette.

August 4
Today is the first day I've felt somewhat normal outside of the low
grade headache since the surgery. I'm sore as hell in my lower abdomen
near my hip. I will say that I feel more flexible. I haven't taken
Skelaxin since before the op.

August 5
I still have a low grade headache. The doc said that the spinal
headache is caused when the insertion point of the catheter in my
spine is loose or leaking a bit. Two days of bed rest. Boring. If
after the rest the headache continues I'll need to get it patched in
an outpatient procedure.

August 7
I can hold my breath 20-25 seconds. Before the surgery it was around
9-10 seconds.

August 8
I need to call Monday to schedule a blood patch to correct the leak.
I've also noticed that I am not as flexible as I was earlier in the
week. That could also be due to the leak. Fortunately the leak poses
no danger other than discomfort.

I did some programming work today. My arms don't feel as heavy when I
type.

August 11
No headache since Friday. Update: I called the doc and since I haven't
had a headache for two days I don't need a patch. Yah! I go tomorrow
for a change in the dosage.

This morning my colleagues at the company met at our apartment for our
weekly Monday Morning Power Meeting. They all noticed a change in my
face/neck and remarked that it looks relaxed.

August 12
I went to the doc's office today and had the dosage increased 10% to
110µmg/day. It is the first time I've been out of the apartment since
coming home.

August 31
I continue to be surprised when I find that I can move in a way that
was difficult for me for so long. I've eliminated one of my meds for
muscle stiffness. My final visit with the doc was last week and I only
need to return if the pump is malfunctioning. As he was leaving he
said to make sure that I get the pump refilled on time or I would know
pain as I never have before. Baclofen affects the pain receptors and
sudden withdrawal sends them into a tizzy. Hmm, that's something to
look forward to ;).