Hi all, this is a long story, so I'll just hit the high points. In 2011, my then neurologist thought it would be a good idea to get a baclofen pump inserted. After years of struggling to make it work, I had the blasted thing removed about a month ago and I'm feeling so much better! I believe that my spasticity was never at a level for which a pump should have ever been considered. I have SO much less pain now.
For the right person, a pump may be a Godsend, but I was not the right person. If anyone is considering getting one, I'm open to questions.
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Lisacpa
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Oh during the test, everything was great! I had been taking Zanaflex 4 mg because oral baclofen didn't help me at the time. The zanaflex caused terrible dry mouth, so much that my salivary glands became clogged. When I mentioned this to my neuro, he suggested the pump. At that time, there wasn't as much information available as now. At any rate, after getting the pump, I never had a single day that compared to the test. Doc, in retrospect, was pretty bad. I'd go in, ask him to up the dose, week after week. Got as high as 300 mcg/day (some people get 5 or 6 times that), but never got great results. After awhile, we turned it down & left it there. After a couple of years with the pump, I had to leave my job on disability. Then my husband accepted a promotion & we moved. Then I was close enough to go several times to the Cleveland Clinic. The physiatrist there was a wonderful, kind man. But one of their PTs told me that the pumps can cause weakness in the trunk, & that's what happened to me. Basically, I developed terrible pain starting about 6 months after I got it, & it got worse & worse. Finally, saw new neuro & we agreed my spasticity never justified getting the pump. Gradually took the med level way down, finally to zip, and got the whole thing out.
I just think I was sold a bill of goods, & it actually made things worse. The pumps are probably great for the right candidate. I just wasn't one of them!
It's interesting that the test dose went well but the actual pump didn't match the test experience.
I had a very strange experience with the test dose. I have been at 120 mg/day of Baclofen for awhile without much help, plus 6 mg Zanaflex at night, which works better. Intrathecal test dose of 25 mcg Lioresal given with no help. Found out after that this is the starting test dose for *smallest of pediatric pts* (which I'm not, by any stretch). The standard starting dose that I should have received is 50. He (physiatrist) refused to repeat it with a higher dose. Then, to add insult to injury, he proceeded to tell my neuro that it made me worse (i.e. wobbly). Definitely didn't happen. So bizarre. Scared me from pursuing it further. If it did work, it might be exactly what I need because spasticity and fatigue are what disables me. Would love to get off oral baclofen! All of this detail isn't relevant to you (sorry for ranting!), except that we both have had bad experiences--mostly because of the clinicians involved!! Grrr!!! SO frustrating what they put us through...like we don't have enough to deal with already! How could we protect ourselves from this, anyway? Due diligence (looking into his background, reviews) wasn't enough. Ugh.
Well, you sound like the pump would be great for you! Is there another doctor you can see? My neuro who originally recommended it to me was just a general neuro-not a physiatrist. My current (general) neurologist used to manage pumps, too. When we moved, I went to the Medtronic web site to find a doctor who was connected with them. It isn't foolproof as some docs stop doing pumps & the site isn't updated. But it might give you a place to start. I've never taken more than 20 mg of oral baclofen. Don't give up. Just be sure you're comfortable with whoever you choose.
Wow, excellent post, Lisacpa . It's always good to hear all sides as a drug, procedure, treatment, etc doesn't necessarily work the same way for everyone. I don't have spasticity, but have learned a lot about it from everyone here. MS certainly isn't a "one disease fits all."💕
Okay, I just thought of another important point. When you get the test dose of intrathecal baclofen, the dose is very unscientific (IMHO). For example, I received my dose....later, I went to the restroom, & ran into my neuro. He asked how I was doing, & I told him "great," because at that moment, it WAS. But when the time came for me to go home, I was so loose that I had to be rolled out in a wheelchair. Remember at this time, I was still mobile, & not using any cane, walker, etc., so this was huge. The point is, when the person being tested feels great, they can't tell you what that would translate to on an actual pump. If you do go to a different doctor, maybe you could ask him/her about this. A doctor who's good at managing the pumps will be able to make you comfortable. My old doc was a very kind man, but after I moved, I realized how terrible he was in certain respects. I should never have had a pump. Hope this helps!
Well, you may be as surprised as I was. My neurologist asked me to describe what I have. I told him that sometimes when I stand up, I have a very strong need to stretch. He asked if it goes away within a few minutes; I told him it passes in less than a minute. He thinks I shouldn't take a chemical for something that goes away so quickly. This is the first time in 20 years that I haven't taken anything for spasticity. (He did tell me to call him if I have problems. 😳)
What really matters is when your doctor taps your knee: is it loose? Or does it wildly overreact? What about when they test your reflexes at your elbows? How strongly do you react? That's what they should be looking at. Even my neurosurgeon (who took out my pump) tested me, & everyone agreed I just don't have that much.
Wow, sorry you went through all of that. I was started on Baclofen 100 mg tablets two weeks ago, I am having more symptoms now then before with the numbness/tingling and the leg spasms. Definitely got to talk to the doctor about this when I see him in October.
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