Old 11-10-2017, 10:56 AM #1 (permalink)
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Default Happy baclofen pump users – need your help!

I have clinic soon and I know the issue of a baclofen pump is going to come up again. I believe they offer the pump to all with PLS, but I believe it is more helpful to some than others. So I’m doing my research to find the ideal model for a successful pump installation. Will you take a minute to answer questions about your pump success story?

How long did you have pls before getting pump?

How old were u when got pump?

What was your level of functioning? Still walking? Totally wheelchair bound?

What dose of oral baclofen were you on before pump?

What oral dose do you take now?

Upper body effected before pump?

Is decline in legs symmetrical?

Did your function improve after pump? I.e.: Couldn’t walk before and after could?
During the recovery period did you lose function that you didn’t get back, or decline further?

Have any back issues?

Did your degree of stiffness vary? Is the pump set for the most or least degree of stiffness you’ve experienced?

Thank you for your time in helping me make this decision!
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Old 11-15-2017, 12:22 AM #2 (permalink)
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Default Re: Happy baclofen pump users – need your help!

I just had a pump implanted 2 week ago at age 60.
I have been dealing with PLS for 20 years impacting legs and hips only (one side more than the other) and been using a cane for about 10 years, but have increased usage lately (near 100%) and just purchased a rollator for more extended excursions.
I've been on 20-30 mg 4x day for about 5 years and in the last year have noticed it not being as effective. Dr did not recommend an increased dosage, so the pump was the next logical step.
So far recovery has been progressively better from day one of release from hospital. I got too anxious about decreasing oral baclofen and symptoms returned. Now following Dr recommendations and leaving the 6 to 10 week pump titration process to monitoring for high dase symptoms.
Yes, the spasticity caused extreme lordosis and resultant back pain.
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back, baclofen, clinic, decline, help!, helpful, pls, questions, research, stiffness, story, wheelchair


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