Help
I have not been on for a whle. After having my third revision in December {new cathetar replacement requiring a lami to remove a broke cath.} I thought things were settling down. The middle of March I started having more spasms so I went in for some dose increases. It helped wonderfully at first. As time went on it seemed to make me feel worse. My reflexes were fine and tone was not bad, but I was having spasms from h*** and terrible pain so I couldn't sleep. I went from 410 to 755 in one week. the doctor kept telling me it was my condtion in exacerbation {mine doesn't have exacerbations, but when you are sick and tired . . .} so I followed his directions. It got to the point he prescribed my oxycontin for the pain in my legs and back. I was scared. I thought after all these increases and I am getting worse i don't want to be like this!!! Well, after a horrilbe weekend I called him and told him what was happening. He said I had to increase the dose again and I said NO!! I went to the ER. It was beginning to look like withdrawal-but not quite. So he put me on orals, valium, benedryl and percoset. After 24 hours he dropped my dose to 100. I didn't think to ask why at the time???? I had a negative dye study. I went home and did feel better. tired but spasm free. He told me I had to go to the neruosurgeon and get my pump out.
I was thinking,"After all this time I have put in to this and he can't explain what happened to me and he just wants me to ditch it???" He is a 'nice' doctor but has little ITB experience. He said I couldn't tolerate the intrathecal baclofen. Well, I was taking the pills {snore city} and it works on the same area and my system wasn't wacking out, so what was with that??? 
I talked to some people, including my neuro. and I ended up going back to a pump doctor I liked better but had to swtich from due to distance-but in this case is not an issue. {He is about 40 minutes away-after the lami it was too far}. What he told me after talking to his partner {a guru in Baclofen pumps} is that I was dosed too quick with too big of doses. Last summer I was getting 15% tops every other week or so. This doctor was increasing me up to three times a week at up to 30%. It may work for some people-like those with MS I have heard it can work. My neuro. system is "sensitive" to small changes and I was told that the dose increases had to be small and with enough time in between for the body to adjust. so this last episode was doctor created. I have had a few issues with this doctor in the past, but not this bad. I have a rare condtion and he has a small suburban practice and doesn't see too much stuff that is different. I had all this pain and he couldn't pick up the phone and call someone who might be able to help. He also didn't say,"Mrs. A, I really don't know what happened. I think you should get a second opinion." He just wanted me to get my pump removed. 
After all the work I have done and the three fix ups just have it out without a second opinion. How arrogant. So I am back at my old pump doctor who works with a major University and feel much better. I can't wait to get off the orals. i have to take Baclofen 10mg every three hours-too sleepy otherwise. I am set at 105 right now and I figure it will take me the rest of the summer at least to get weaned off the orals. Should have been done by now. From past experience I figure I will end up about 400. I just can't believe that doctor. He is a nice person. But I think he was trying to cover his butt when he dropped my dose before th dye study was done. Things that happen. Hopefully by this time next year I will finally be in cruise with my pump. I think it will be worthwhile once all the kinks {doctor included
} get worked out.LA
