I had once looked to a baclofen pump to solve some problems. Now, after five years, I have given up on the pump. In this note I share what I had expected, what I experienced, and why I changed my path. I had, and have, three manifestations of spasticity in my right lower leg. A "knee jerking" in which, while sitting, my knee would suddenly and violently come flying up towards my chin. It never reached its target but would slam into the bottom of the table or desk, bruising the knee and not doing the desk any favors. The occasions would be random but separated by tens of seconds. A "pulling", also while sitting, in which both extenders and flexors of the entire leg would all slowly and intensely pull. The foot would turn to the left and roll inward putting the outer edge of the foot towards the floor. The pull would increase for a second or two, hold for a second, and then relax. A tonic roll of the foot. This was not visually obvious, but the excess tone was noticed early on by a physical therapist, and eventually the foot became a club foot as if it were a birth defect. The club foot stopped my walking and returned me to the wheelchair. I tried oral baclofen, and it put me into depression. Stopped it. After two years of fighting an HMO and a depression related lack of initiative, I went to Dr. Kerr at Hopkins. At his suggestion I tried Botox, the obvious way to disable this tonic pull. It didn't work, and after another attempt, I gave up on Botox; I guess I'm immune to that type of food poisoning. I did learn that Botox in a deep muscle is NOT a recreational drug. Dr. Kerr suggested the baclofen pump. In a baclofen sensitivity test, a single bolus of 50 mcg wiped out my legs for an entire day. Dr. Kerr assured me that a baclofen pump could be adjusted to correct the tonic pull without making it difficult to stand. Dr. North of Johns Hopkins concurred, and I had him install a pump 8/30/01. The initial daily dosage was 50 mcg. Because I lived in New Hampshire, not Maryland, the subsequent dosage increases were spread out, not closely sequential, and by various providers. The next thirteen increases of about 25% each (and some refills without an increase) took me to 321 mcg by 10/2/02. The violent leg jerks had finally been subdued, but my notes said I still had a club foot when I awoke in the morning. By the end of 2003 I was up to 690 mcg, still clubbing, but standing had been compromised. I sagged like a candle near a hot stove. The dosage was dropped to 588 and standing returned. The excess tone was still there, and the increases resumed. Mid June '04 the dose was at 675; my notes read, "slight effect on standing, no diminution of spasticity". After 5/3 I noted that "on awakening, right hamstrings [especially the inner] slowly throbbing/tightening". On 6/4/04 I started taking Zanaflex in the evening. My notes of 9/15/04 comment on Zanaflex, "helps jerking; doesn't stop "pulling" spasms." A year later, 10/25/05, the dose was up to 1230; the notes, "still having pulling spasms when I lie down for a nap". By the beginning of December I had had the first fall because my legs wilted. I believe that whenever my system was weakened by an illness or otherwise, I was in danger of a serious fall. I blamed baclofen for exacerbating the problem, and started decreasing the dosage. I went down on a sidewalk and really gave up on baclofen. I don't know why the baclofen pump never stopped the pulling and excess tone. I believe the data shows that Dr.s Kerr and North were wrong. I had discontinued the increases at 24 times the dosage that, as a bolus, had once paralyzed me. I know that I had stopped walking as often as I used to - that would lead to weakness. But I can still walk with a walker or crutches; I just cannot stand. It is possible that my body adjusted to the medication as rapidly as my slow increases. It is possible that my body reacted differently to the sudden onset of the bolus. I dunno, but I'm done. Now my question will be, "How much Zanaflex is safe?" Alton |
