Multiple Sclerosis (MS) Support Group

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wleblanc48 07/27/2009

I would like to know if anyone has had this procedure done and if it truely does help. My doctor keeps pushing it and I am unsure of it. It seems as if there could be quite a few complications with it. I do have spacticity but I am able to walk and I do not want to rock the boat. I would like to hear from anyone who has gone the the procedure and what their opinion is on the procedure.

deleted_user 07/29/2009

Well, I was about to ask the same thing. My spasticity is progressivly gotten worse. I'm going to Neuro today and want to talk to her about it. I'll let you know what she says. I will be watching the replies you receive so maybe I can get some insight too.

deleted_user 07/29/2009

I have had a baclofen pump since 1998 and it's great. I have no spasticity and I also ended up with the unexpected benefit of my bladder retention being "cured". I did have some initial problems with the catheter which required additional surgery. I am scheduled for a pump replacement (my 3rd and no big deal) in August. The pump battery lasts 5-7 years. If I can help either of you with more of my personal experiences (i.e. refills) please let me know.

wleblanc48 07/29/2009

Thank you for sharing your experience with the pump.How often does it need to be refilled and is there any threat to our health if unable to have the refill done within a certain amount of time. We sometimes go out of town and Iam worried that I may not be able to arrive on time that it runs out.

deleted_user 07/29/2009

Time between refills varies with the dose but it cannot exceed three months; the med starts to lose effectiveness. I get refills every three months. AT NO TIME SHOULD THE PUMP BE ALLOWED TO RUN OUT. THIS CAN BE FATAL. SERIOUSLY, IT IS A WARNING LISTED IN THE DRUG INFO. Last year I had to postpone my refill appt., the pump alarm went off for 2 weeks since I miscalculated my alarm date and lost my telemetry printout.. I went into withdrawal (sweating, insomnia). This was over the weekend so Dr. gave me oral baclofen until Monday. It is not the same thing. Boy, did I get read the riot act. After 10 yrs. I knew better. Catheter kinks present the same problem but you know when your symptoms return. Please don't let this scare you, though. It just can't run out. I still love my pump.

deleted_user 07/30/2009

I went to Neuro yesterday like I said. She said the Baclofen Pump is a very good idea. I just have to go to the pain clinic where the doctor who implants these works. I hope I don't have to do PT since transportation is a problem for me. I think this is a thumbs up.

deleted_user 07/31/2009

I hope the pump works well for you. Mine is also managed by a pain management clinic. Best of luck to you.

JaniceKay 08/01/2009

Besides what pcw1014 says about the pump alarming meaning you're meds are about to run dry & you could go into w/drawals, there's also the risk of the pump malfunctioning, which then means you'd have to have the dead pump explanted & replaced.

Infusion rate & bridge boluses programmed into the pump determine the life of the battery, it's unique per patient.

wleblanc48 08/03/2009

Thank you for the info. I made up my mind not to have the pump. I was reluctant at first and really not wanting it at this time . I have always been told to follow your instints and I will follow it this time. Thank you again.It does not feel right for me.

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