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Baclofen Pump

By Gloria

At 17 I suffered from a SCI, in a vehicle accident. I am a T-6 paraplegic. However, I suffered from severe spasms ever since. My spasms are so bad they get in the way of me trying to move. Medications for my spasms do not do anything I have taken all kinds of medicines and none help. Yet, my doctors and therapist talked to me about the pump and after a struggle, they convinced me. First I went to try on a trial of. This trial was temporarily, it allowed me to feel how my legs and body would be without spasms. I felt relief, during the trial. For the first time I could eat, without spasms in my stomach and didn’t have to worry about getting a spasm when I moved. Nevertheless, I feel nervous about getting, surgically a baclofen pump. Things that worry me are infections and refilling the pump.

31 Posts

JoeG says:

3 1/2 years ago I had an SCI from a bicycle accident, and am currently a C-4 complete quadriplegic. About a year after my accident doctors recommended a baclofen pump due to my severe spasms, and following a successful trial I had one implanted. It has been a good thing and I do not regret it. For the 1st year and a half we kept tweaking the dosage, but it got to the point where I was getting a refill every 2 months. About a year ago they changed the concentration level and now I only get a refill every 6 months. If you have a doctor that knows what they are doing, refills are not a problem although the 1st few do cause some anxiety. Infections have not been an issue at all. My biggest concern is if the pump were to malfunction, because that is a life-threatening situation. We keep baclofen in pill form handy in case this were to occur. My current doctor definitely knows what they are doing and I have a lot of confidence in them, my 1st doctor not so much. Let me know if you have any other specific questions or concerns that will be happy to relate my point of view, but I can definitely say life is better and easier with the pump.

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104 Posts

zuzu says:

Gloria, my mom had a Baclofen pump put in almost three years ago. She's a incomplete C 3-5 quad who at the time was 7 years post injury, and 79 years old. She'd been having increasing problems with spasams like you talk about that were interferring with her daily care, as well as causing her lots of pain. She was at the maximum dosage of oral Baclofen, and the dry mouth that it caused was creating problems with her oral health. When the doctor mentioned the pump we were concerned too. I live in NC and she's in CA, so I contacted the CRPF who got me in touch with a few people in my area who had the pump that I could talk to about their experience. I talked to three people and each one had positive things to say. I want you to know that Mom has had a positive experience with hers too. Like the other person who posted, there were some little things to tweak, especially learning the dosing and refill schedule for her, but once they figured out what worked, it was good. She noticed the improvement fairly soon after it was put in, she's had no problems with infection, they are living in an area where she can have the pump refilled with little problem but she also has oral Baclofen on hand in case she runs on empty. She wouldn't change her mind about the pump because it's allowed her legs, arms and hands to be more relaxed which has helped loads with transfers, dressing and has helped some with pain.

I'm not sure where you live or who your health care provider is, but if you can contact a few patients of the doctor who will be doing your surgery so you can talk to them, you should. Ask them how post surgery recovery was (Mom's was done as an out patient, she didn't even have after surgery puking, something my sister and I are quite jealous of); what they like about their pump; what problems they've had; and if they would recommend the pump and/or doctor who did their surgery.

People think a person with paralysis has no ridgitiy or movement at all, like a "rag doll" and don't understand that there's extreme tightness and curling because of constant spasams, which cause pain, which most people who are unimformed think paralyzed people don't feel. I hope you find the solution to your problem with spasams, whether it's the pump or a combination of medications, therapy/massage and alternative ideas.

Deborah

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KRISTINE says:

I think the Baclofen pump is WONDERFUL! 2 1/2 years ago, I had a Baclofen pump surgically placed. It is one of the best things I have done.

I have MS and suffered from leg cramps so severe that I woke up every 15 to 30 mins in screaming agony. Taking dosages of oral Baclofen high enough to allow me 4 to 6 hours of sleep left me feeling grogy and unfocused the remainder of day.

The amount of Baclofen the pump puts out daily is less than the lowest dosage pill. I've had no problems with the pump and because of low dosage, I have not noticed any Baclofen side affects.

The pump is placed just under the skin & to the left or right side of belly. I can physically feel it's size and shape with my hands but visually it can not be seen unless I lean over at just the right angle and an edge will sometimes cause a small bump on skin surface.
Also the pump can be set to put out 4 different dosages during a 24 hour cycle. I get a higher dosage at night to control leg cramps, lowest dosage in morning & early afternoon then slightly more in evening because of muscle fatigue.

A little humor: One time airport security decided to pat me down. As she touched my belly, she felt the hard pump & demanded I remove what I was hiding in my pants. I was trying to explain it was a medical device under my skin when she suddenly recoiled and exclaimed, "You mean it's INSIDE you???" I said, "yes". She looked horrified, literally speechless & just waved her arms around indicating I should go on as fast as possible. My spouse & I still laugh about it.

Another story: About 9 months after pump was placed, I heard a distant & consistant beep. I thought it sounded like a low battery warning on a smoke alarm. My spouse never heard it but I spent at least 2 weeks trying to find the source of beep. Then one day I was in bathroom when it beeped loudly. I knew there was nothing in bathroom that would make that sound and finally realized it was my Baclofen pump warning me that medicine was low. Now when I hear a beep, I check myself first.

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Julie says:

I have a similar injury level as yours and had also suffered from severe spasms and nerve pain. About 3 years ago, I got the pump and it has provided significant relief. I get it refilled every 6 months, but could go longer based on my dosage. That's just what my doctor recommends. I will still have an occasional day when it all flares up again - no clue why. But then I'll just take some oral Baclofen to get through that day. I would recommend the pump.

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Adam66062 says:

Gloria,

I was injured 4.5 years ago and I am a T-10 paraplegic. I had very bad spasms as well. I was taking the maximum dosage of baclofen as well as zanaflex and valium at night to try to get some sleep. I was amazed at the relief I felt after the trial as well, but I decided to go ahead with the surgery.

I am athletic and very active and the pump has never been an issue. You can see the pump, but it does not cause any issues.

As far as your concerns with infections and refilling the pump, I think I have some information which might help. The initial surgery is actually the main risk of infection, but since the pump is place in the subcutaneous level (just under the skin) the risk is low. The refill is done with a single injection. The risk of infection is very low. I am a T-10 and the injection site is below my level of sensation, so since you are a T-6 it should be pain free as well.

The baclofen has a life expectancy of six months at body temperature, so that is the longest you can go without having the pump refilled. (they remove the excess medication in the pump then fill it with fresh) When they adjust and/or refill the pump, they can print out an information sheet that has the expected date the pump will run out at the current dosage. I usually set my appointment for the refill about a week before that before I leave the doctor's office.

It has made a huge difference in my daily life and how I feel. Of course, it is a decision you have to make for yourself based on your own situation, but I'm glad I got mine. Good luck with your decision.

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128 Posts

PRC_Bernadette says:

Gloria: Looks like you got some excellent feedback regarding the pump. There are several advantages to using the pump vs. oral medications:
1) requires less meds
2) easier on your liver long-term
3) the pump can be adjusted for some tone to help with getting dressed, etc.

Please let us know how your procedure goes for you and what you think once it is over.
Wishing you much success.

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JayBird says:

My husband is a C-6 quad complete after a fall in August 2011. His doctor is recommending the pump since we are up to 40 mg 4 times a day of oral baclofen with no relief from the spasms. His main concern is of course the surgery but also the chance of infection. But he can't live like this either--nausea and sleepliness all day long. My concern is without the spasms wouldn't he lose the "good tone" in his legs?

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