baclofen pump

[cvbeach]

i have secondary progressive ms and walking is becoming a great difficulty. my doctor thinks i'm a candidate for the pump but i don't know. does anyone out there have it and what kind of improvement did it bring?

[Sequoia]

Hi cvbeach,

I've moved your thread to the Medications forum because that's where most of the discussion of the baclofen pump is located.

[kmallory1]

I've had a baclofen pump for 2 1/2 years. It has helped my spasticity, and relieved the pain in my stiff leg.

Whether it will help your walking depends on the problem you are having. The pump relieves spasticity, or stiffness. It may actually increase muscle weakness.

I have one of each. One leg is stiff, the other is weak. My pump is set on a low dose to relieve as much spasticity as possible without overdoing the weakness in the other leg.

Before you get the pump, your doctor will set up a test. An injection of baclofen will be given into the fluid in your spine, kind of a reverse lumbar puncture. He will evaluate how your spasticity responds to that injection, and you can tell how your walking will be affected.

[cvbeach]

Baclofen pump

Kmallory1. Thanks for your reply. Are you happy with it? Any drawbacks?

[hunterd]

cvbeach, i also have a baclofen pump. i am pleased with it, it has significantly relieved my spasticity in my leg, but also weakened my already weak leg (the same leg is affected by both). that was the only drawback for me, and i feel it is outweighed by the positives.

[kmallory1]

Cvbeach, I'm really happy with it. It's the only thing I've done that's actually helped any. I took oral baclofen for a couple of years, and could never tell that it was doing any good at all.

We make a 6 hour auto trip several times a year. My spasticity made that increasingly painful. My leg would hurt right down the back, from hip to foot, and I could never get into a position that helped. Now it's no problem at all.

Refills are done with a BIG needle. It's kind of scary looking, but I'm pretty numb right on top of the pump so it doesn't hurt.

The surgery itself was scary to me, and I put off getting the pump for a couple of years because of that. You have to lay flat on your back for 24 hours after they put it in. I was apprehensive about that, but it turned out OK. I stayed in the hospital for 48 hours.

I wear slightly looser pants with elastic in the waist now, so it doesn't bind across the pump. The edge of it can sort of dig in if I wear tighter jeans.

Let us know how your decision goes. There are several of us with pumps, so we're always interested.

[rdmc]

I have a pump and it drastically improved my gait. I'm in the same boat with kmallory. I have one leg that's much more prone to spasticity, so it's a juggling act to relieve enough spasticity in the one leg without relieving too much in the good leg.

Consequently I still put up with some stiffness in my bad leg, but I have no more contracture at my ankle, can lift my leg off the ground normally ( used to be able to only lift it a couple inches), my range of motion in the hip was nil...now it's great, and my gait looks darn near normal.

What it hasn't done, as far as walking is my stamina. I used to be able to walk about 100 yards and I still can only walk 100 yards. I still have pain off and on in my bad leg...it seems to come when I go outside my normal range of activities and overdo. I could have the pump turned up, but then again, we're back to the effect on the other leg..but the good thing is, if it gets turned up too much and I do feel
Weakness, I can always have it turned back down.

I'd have to say that the pump was the most significant decision I've made since I've had MS regarding meds or any kind of treatment, Like PT etc. It was
definitely a game changer for me.

[okie76]

Dosage

Can the pump be set to dispense a different dose at different times during the day? When I first get up I can walk some but 3-4 hrs later I can hardly move my legs, they feel looser to me.

[bluegiraffe]

My understanding is yes - the dose can be changed for specific times of the day. I do not have it set to change but my physiatrist relayed it could be done.

[Hawkgirl]

I'm curious about the baclofen pump. I have MS hug, and it is ferocious. But I don't know if I would call it spasticity. Is the baclofen pump ever used for MS hug? I have not even been prescribed oral baclofen for it.

I ask because I am SPMS, so this hug will never go away. Since I'll have it forever, I wonder if I'll be taking this truckload of pills forever, or if a baclofen pump might be my final solution?

If I'm wrong about anything, please feel free to correct me. I don't think so clearly anymore.

[kmallory1]

Hawkgirl,
I googled MS Hug and found an explanation that says it is the result of small muscles between the ribs going into spasm, and is considered to be a neuropathic pain.

Spasms and spasticity are not the same, even though they sound like they would be. From what I understand, Baclofen doesn't do much for spasms.

In recent conversations with my neuro about spasms, he prescribed Trileptal for leg spasms at night.

[Hawkgirl]

That's interesting. I've never heard of Trileptal. I have Zanaflex, which may or may not work. If I take a half, it doesn't help; if I take a whole, I pass out, so who knows if it's working?

The best thing I have is Lyrica for the pain. That helps. And Valium helps.

I'm sort of relieved to hear that Baclofen wouldn't help me. I've been thinking about having an open port into my spinal fluid and I didn't like it. God bless you folks that have it, and I hope it helps you!