Baclofen pump trial successful!

[RonPaulaD]

On 12/3 I had a baclofen pump trial procedure and it went very well. I'm mobile but have a very stiff walk with some pain in my left leg and I don't use any assistive devices. I met with my physiatrist on Wednesday and she and the CNP felt that I was a very good candidate.
They plan on starting me off at 50xx(don't know the measurement) because at the first test two hours after the infusion was my best walking. I was too wobbly at the four hour mark, which would have been closer to 100xx. I'm very excited about the potential results, yet a little apprehensive. I've only had things taken out of me, never put in.

Paula

[melissa138]

re: baclofen pump

l've had a pump for about 6 yrs, with nothing but positive results. l'm currenty on 250 mcgs (micrograms), and with the exception of having to go in once a month to have it filled, wouldn't even know it was there. l don't remember having a "trial procedure"; l got the pump when l started needing a higher dosage than l could take orally (also the pills made me so sleepy l literally couldn't stay awake - the pump doesn't affect me like that). They do need to increase the dosage gradually. Good luck - feel free to ask if you have any questions.

[RonPaulaD]

Thanks for responding. I'm wondering about sleep positions. Do you find that sleeping on the side that has the pump is uncomfortable?

[Kimba22]

I too, have a baclofen pump. You do sound like a good candidate!

Sleeping on the side where the pump is at should not be a problem. You might find it takes a week or so to do so, just because of the initial soreness of the surgery. Everyone is different, but once the site heals, you should be just fine.

It sounds like a scary proposition, but has been well worth it for many of us. If you have any further questions, don't hesitate to ask us, OK? Someone is bound to have an answer!

There's another thread by Marco you might also want to read: http://www.msworld.org/forum/showthr...=baclofen+pump

Best of luck ,

[zenhead]

bad pump?

i truly appreciate all of your bac pump stories. i am considering it and working to get over my ooglies (a phrase my daughter coined when dealing with major medical intervention). i did a trial a few years ago, and was completely incapacitated - had to spend the night in the hospital. i am curious, everyone reports wonderful results. has anyone had or heard of bad experiences? pump malfunction, catheter issues, etc.? i find it very hard to believe that everyone's experience has been so perfect. (i take oral baclofen, enough that it makes me ooglie and doesn't always eliminate the painful cramps.)

[Marco]

Paula,
That's great you had a successful trial. I am so glad you found out about the therapy while you are still walking and can enjoy the pump for the longest time period possible. Some people wait too long and they no longer have the muscle necessary for mobility. It's amazing how a pump can take away too much and make your legs like jello. That normally means you are responding and just need less medication. I know it's easy to freak out if you cannot move your body, but that is an indication of too much medication. It may take a few dose adjustments before they have you setup correctly. There's a number of ways to configure the dosing to try to give them the best idea of your spasticity. For example they can configure the pump to supply a constant flow all day long, or they can configure it to give you more in the morning/evening, or a burst dose at 2 pm or 8 pm. This allows the doctor to give you a customized medication regimen tailored to your needs.

The pump comes in both 20 and 40 ml sizes. The diameter is the same for both pumps, but the 40 ml is thicker. I opted for the 40 because of the larger reservoir, but I will try to downsize it whenever it needs to get replaced. I really wanted the longest time period between refills and currently go twice/year. For me the larger pump is slightly visible underneath my clothing, but did make certain garments slightly harder to wear.

I got my pump implanted on my left side so I could lay on my right side and watch my wife sleep. After healing up the pump does not interfere with sleeping on either side. In fact, I am sleeping better because my spasticity and pain levels are much improved.


There are a number of pro pump people on this site so if you have any other questions please ask. If you are considering a Medtronic pump they also have an Ambassador program where you can sign up to speak on the telephone with an actual patient.