Intrathecal Baclofen Pump

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 Cemetery Data 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 ;).