baclofen pump

[Guest guest]

There has been a lot of discussion lately of the baclofen pump and it's impact on function in PLS. (The pump seems to be this year's Tickle Me Elmo for the PLS set.)

I've had the pump for three years and it's been long and winding and mostly unhappy road. Here's the timeline in brief.

Summer 97 - Neurologist recommends pump. Says I'm a good candidate because I was so strong. At the time, I was walking unassisted but more slowly. I thought the pump would take the edge off the spasticity, maybe allowing me maybe even to run.

Oct 97 - I walked the length of Manhattan Island from the Bronx to Battery Park in 7 1/2 hours (about 15 miles).

Sep 97. Do test with a spinal. Impact is significant and positive.

Dec 97 - Pump installation. Opening dosage is 75mcgs.

Dec-Jan - Feel better, looser. Walking seems to improve as dosage adjusted upward.

Feb 98 - Dr. raises level to about 120. The next week I started to feel very unbalanced and to fall regularly. I had fallen maybe three times total before the pump. I have to stop taking the subway to work and start taking the bus. The feeling is like nothing I had before the pump. Strangely, I felt less spastic but walking was definitely worse. I felt sure this sudden change was not/not the disease which previously had provided only slow and steady change.

Feb - July 98. A rollercoaster of baclofen since the doctor is convinced that if he can control the spasticity, the function will improve. Up to 600 mcgs; back to 150.

July 98. If you have the pump, you need never have a spinal tap since you can use it to extract CSF. We try that for a test and it doesn't work. Conclusion: the catheter is not connected.

At least, I thought, that would be the answer.

Aug 98. Back to the hospital to reattach the catheter. Two things are apparent: 1) the balance problem remained and 2) I was getting way too much baclofen. At 200, I couldn't lift my leg. We eventually settled around 80 mcgs.

Aug - Dec 98. Again playing with the dosage but nothing gets me to pre-pump function.

Jan 99. Move from New York to DC (with new wife) and baclofen at 40.

Jan - Nov 99. Still going back to New York for adjustments. Still playing with the dosage. Still not working. It's clear, however, that although higher doses effectively reduce spasticity, that does not/not equal improved function.

Nov 99. Back to 130 and it's horrible. I can barely walk even with a cane. Resolve to find new doctor in DC.

Jan 2000. Find new doctor and begin to reduce dosage again.

Summer 2000. With baclofen down to 80 or so, begin botox injections in the legs. (But that's another e-mail.)

Jan 2001. So what about the pump? Well, it sure hasn't worked for me as I hoped and as advertised. Like others have reported, the test dose (at 75 mcgs), was like heaven. But it's been downhill from there. I certainly would recommend the pump for anybody interested in reducing severe spasticity but who is less concerned about function. And certainly one clear advantage is that unlike all oral spasticity medications, the pump requires far lower amounts of medicine and without the dopey side effects. (I think that may be the source of much of the fatigue that people report.) I was back in New York last month and saw the head of ALS institute there at Columbia, Dr. Mitsumoto who said that there really isn't an effective medication for spasticity and that just relieving spasticity may not improve function anyway. I've thought about taking the pump out and may yet but it's a hard step since I can't be sure that I won't be worse off then. I went for a refill last week and reduced the dosage yet again from 68 to 62. Maybe zero is in the future but I'd rather have a cure.