Reeve Foundation Paralysis Community

Can anyone share their exeriences regarding a pump. I have spasms and are under pretty good controll on medications, but cause a lot of side effects. I am not sure if a pump is the answer...

hi
my injury area is from stomach down and got spasms in this part of my body all the time but never tried to control it and its getting better itself.i dont think spasms need to be controled.but i think it depends on persentage of injury .maybe you need.do you think you really need?

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A drop of water,loves the ocean.Do we love our truth?

Hi! I have a close friend that has had a pump for 5 years. It helped with the spasms, but 3 years ago he got worse and they added morphin. He has been missable every since . Make sure that you can depend on our doctor that put the pump in for my friend he thought he could depend on his doctor but he has done him more harm than good. If you are able to controll the spasms with meds that would be the way I would go.You might want to look at all the pros and cons.

My mom had her Medtronic Bacloifin Pump put in Sept. 2008. She was 77 at the time and 6 years post injury, an incomplete C3,4,5 quad.

She decided to have the pump because she, too, was having problems with side effects, especially the dry mouth thing. But even more convincing was the fact that she had to take increasingly high doses of oral Bacloifin to deal with the spasms and had gotten to the highest dosage they were comfortable giving.

The doctor felt that dosing through the pump, which bypasses the digestive system, would eliminate side effects but also let them lower the dosage while increasing the medication's effectiveness.

Well it kinda works. She doesn't have as much trouble with the dry mouth, but then again she takes several other meds that contribute to this problem. It did help reduce the Bacloifin dosage at first, but was a little tricky getting the dosing correct for her. The Bacloifin doctor (they have their own doctor who works with yours to be sure everything about the pump installation goes right and gets the calibration correct). Gradually they have had to increase the dose to help with spasms that have gotten worse (a factor of her age, lack of real exercise/therapy?, but not caused by a failure of the pump).

The only problem she's had was when the dose was increased but they all forgot to move up the date to have the pump refilled and she began to run out of medication. She stiffened quite quickly and dramatically.

Before her surgery I called and talked to some people locally who had had the pump put in, similar to what you are doing now. Alll three quads said they would recommend having a pump put in. It would be helpful if your neurologist or a SCI support group could refer you to people that have been using one for 5+ years so you could and ask questions.

The Medtronic people have a website that gives lots of info about the pump, how it works and is installed, how it's maintained. Check out their website.

Last, I'd recommend you get opinions from more than one specialist so you have a settled mind that you have all the knowledge available to make an objective and informed decision. Then just do it, roll on.

I'm a C5 quad and the pump has changed my life.  I love it.  Before the pump, I was taking 120 mg of Baclofen orally without much relief.  I used to have spasms from my fingers all the way to my toes.  If my chair rolled over a moderately rough surface, my arms and legs would jump around (not in the House of Pain way either).

On the way home from the hospital, after having my pump installed, my van ran over a bump and my body didn't jump.  I looked at my father and said "For the first time I actually feel paralyzed".  This was a good thing.  I always thought it was a cruel joke that I was paralyzed but still moved around involuntarily.

My first pump worked well for 4 years.  I had it replaced when I suspected that it was dosing me irregularly.  It turns out that I was not reacting well to the high concentration Baclofen (4000 μg/ml).  I would not recommend that anyone use anything more than the Medtronics 2000 μg/ml concentration.  The higher concentrations are "hand mixed" in labs. It's safer to just get it refilled more often. 

I had a second pump installed by a different doctor who repetitively screwed up the incision.  I finally had it put in properly by Dr. Ben Nguyen at Fairfax Innova Hospital.  Having the right doctor to put in the pump and to maintain it makes a huge difference.

Hope this helps

    --Dave

Thank you for your input, I am certainly looking at all the options. Are you taking any medications for the spasms?

Thank you so much for all your information, I am looking at all the options, will check out the web site....Medtronic and also check with a support group...

Thanks for your input, I am glad the pump has worked well for you. I think it is important to have a good Dr. I am going to check with Medtronics web site and other people. Hope you continue to do well.

Diane

I am a T-6 para due to Transverse Myelitis. I had my pump put in in February 2009, and for the mostpart have been very happy with the decision.

For starters, prior to the pump I was taking 120mg oral Baclofen per day and still not seeing sufficient results. As a previous poster said, I would have severe spasms in my legs from something as simple as rolling over an uneven surface, spasms during transfers were so bad I was often afraid of losing my balance and falling, and with position changes (specifically sitting to lying down) my whole torso and legs would get so rigid I would literally be unable to breathe for about 15 seconds.

As well, when I was pregnant with my daughter I had to cut my dosage in half so that the medication would not have an adverse effect on my unborn daughter. This made for an extremely uncomfortable nine months. About halfway through my pregnancy I found out that the pump is better for pregnancy as the medication doesn't cross the blood/brain barrier, so it can't get to the fetus at all.

My neurosurgeon is quite experienced in putting in pumps, and I switched neurologists within the group to one who specializes in pump management. The pump functioned great for the first 9 months or so. At that point I started having a lot of spasms and needed my dosage increased, so I just supplemented with some oral meds until my next refill date. Well, when I went to have it refilled they discovered the pump had gotten flipped over! This was probably due to my belly shape, and the fact that parenting a toddler requires quite a bit of bending down, even though I try to be careful. Anyway, the flipping of the pump had kinked the catheter and restricted flow of the medication, which was why my spasms increased. I had a second surgery to repair the catheter, and resecure the pump using a different method, and have had no additional problems since.

The only side effect I've had from the pump is swollen feet. Because of the decrease in spasticity, that in turn caused a decrease in circulation causing my feet to swell a bit. The doctors all say it's nothing to really be concerned about, so I put my feet up when possible during the day, and am more diligent about wearing my TED hose at least at night. (During the day in the winter too, but in the summer it's just too hot for it.)

If I had to do it over again I absolutely would, and recommend it to anyone not seeing adequate control from oral meds.

I am a c7 incomplete quad and I have given a little thought to the Baclofen pump but decided it was not for me.  I have been lucky enough to regain full use of my arms and can stand and even walk with braces and a walker (not a normal walk).  My spasms help me have the strength to stand and also help me in other ways.  It is annoying and embarassing when out in public and my legs start jumping but for me, it is worth it for the help the spasms give me.