baclofen pump

[mercadies25]

My neuro suggests the pump. I just need some experienced users to give me some of your thoughts.
Does it actually help better than the pills?
Does it help with these ridiculously painful legs?
Does it help better than the pills for spasticity?
What are some of the pros and cons?

Thanks for your help!

[kmallory1]

I've had a pump for about eight years. I have spasticity in my left leg, and weakness in the right leg. My left was painful, hurting from my hip to my foot at night, and on car trips. The pump has relieved the pain in my leg. I still have some stiffness, because the dosage has to be low to keep from making the weakness in my right leg intolerable.

I took 80 milligrams of oral Baclofen a day, with hardly any difference.

The pump dose is measured in micrograms, literally 1/1000 of a milligram, so you're just getting tiny amounts of baclofen directly into your spinal fluid. It does not have the sedative effect that the pills do.

You should have a test dose to determine whether it will work for you. I went to the hospital as an outpatient, a test bolus was injected into my spinal fluid, and the doctor evaluated the results. So you do get a sort of test drive first.

The downside is that it is surgery. You have a small scar and you can tell it's in there. My pump is on the right side of my belly, just below my waist. I'm about average size, so there is a little fat on top of it. It is refilled every 6 months with a BIG scary looking syringe. My husband opted out on watching that!
It is kind of numb on top of the pump so it doesn't really hurt.

There are several regular posters on this board who have pumps. Ask any question you have and I'm sure you will get replies.

[rdmc]

I totally agree with all that KMallory wrote.

I consider getting the pump implanted to be my best decision in my MS journey.

The difference with and without the pump was astounding. In my opinion, it was a "miracle" like
recovery from barely walking or picking up my legs, and in pain all the time, to almost attaining a normal gait again.

If you have the test, you can get an idea of how much it will/won't help you.

As the years have gone by and my MS has progressed, there are other issues that are now
affecting my mobility, but still the spasticity is in check, and when it gets out of hand, I can
always "up the pump." As KMallory said, there is a balance to be worked out between having some spasticity left in weak legs if you are able to be mobile. The low dose of Baclofen directed specifically on the spine eliminates the side effects of the med. I took 80 mg per day before the pump (80,000 micrograms)...now i use about 240 mcg per day, early on I used less than 100 mcg to manage the spasticity. )

I've had several complications over the years. A couple revision surgeries...at 6 months my catheter came out so I needed surgery to reimplant it. I had another complication and my pump decided to go on a "walkabout" and leave it's designated area...so I had to have it repositioned and secured, and that was another surgery. Plus I got a MRSA infection on the skin/incision which took about 6 weeks to clear up. So it isn't without risk or possible complications.

Still it's been worth all of that to have my spasticity kept in check.

P.S. The pump only relieves the spasticity below the level of placement. My catheter is inserted at T-9, but upper body spasticity still has to be treated with oral baclofen, so I still take a low dose of oral Baclofen to help with neck and facial spasticity.

[90stangg]

I agree with the others. I was taking 30 mg three times a day and I was at the point of not handling the side effects. I've had a pump for for a couple of years now.

During the trial it actually helped with my left arm also, so they put the catheter up into my C4. It's not common to place a catheter this high, but it has help with my left arm.

My pump sticks out a lot, it looks like a hockey puck. I just tell people I had the Minnesota Wild sign a puck and it will be with me for ever.

[BobOP]

I have to agree with the others. Getting a Baclofen pump was a great decision for me. I have had a pump since 1999. I am now on my 4th pump. I have been through 3 generations of the pump. I have the larger 40 cc pump. The 40 cc pump is the same size as my first pump, which only held 18 cc

Wishing you the best, Bob

[Marco]

My neuro suggests the pump. I just need some experienced users to give me some of your thoughts.
Does it actually help better than the pills?
Does it help with these ridiculously painful legs?
Does it help better than the pills for spasticity?
What are some of the pros and cons?

Thanks for your help!

• I LOVE my baclofen pump. It's the single best medical treatment that I have ever had.
• At high doses, the pills can be a cruel form of torture. I am now taking roughly 1/500th of the oral dose with much better results and zero side effects.
• For me, the baclofen pump got rid of all of my spasticity and spasticity-related symptoms. For example; I had spasticity-related pain and that resolved, but the pain that wasn't spasticity-related remains. I use to kick a lot at night and was in constant pain, but since i got the pump all of that is gone.
• For me the ONLY con was not getting my pump sooner.

Here's my story in more detail: http://www.msworld.org/forum/showthr...-or-Marvel-Yes!

[rdmc]

I agree with the others. I was taking 30 mg three times a day and I was at the point of not handling the side effects. I've had a pump for for a couple of years now.

During the trial it actually helped with my left arm also, so they put the catheter up into my C4. It's not common to place a catheter this high, but it has help with my left arm.

My pump sticks out a lot, it looks like a hockey puck. I just tell people I had the Minnesota Wild sign a puck and it will be with me for ever.

Hi 90stangg,

I'm pretty sure I've read about your catheter placement in another thread, but it always astonishes me.

I know neurosurgeons usually choose a thoracic insertion of the catheter, but many of us do take some oral baclofen to help with upper body spasticity, even after the pump. My upper body spasticity is a result of a lesion above C4, but there are many who have upper limb spasticity that a higher insertion would benefit. I even wonder if it would ease the tightness of "the Hug." (I know it's supposed to be a sensory symptom, but it sure doesn't feel "sensory" to me, it feels like stiffness.)

Did they offer you pros and cons of placing it that high...I'm just wondering who decides the level of catheter insertion (neuro or neurosurgeon), and what influences are involved in their decision?

I just realized I might be highjacking this thread, and if so sorry mercadies25. On the other hand, if you decide to go with the pump, it might be knowledge that will help you discuss placement of the pump with the neurosurgeon.

[mercadies25]

Thanks ya'll, smooches
I'll let ya know how it goes.

[hunterd]

I also have a pump, and like the others have said before me, it is the best thing that I have EVER done. I am on my second pump, and I will plan on getting a new one every time the old needs replaceD. good luck

[90stangg]

Hi 90stangg,

I'm pretty sure I've read about your catheter placement in another thread, but it always astonishes me.

I know neurosurgeons usually choose a thoracic insertion of the catheter, but many of us do take some oral baclofen to help with upper body spasticity, even after the pump. My upper body spasticity is a result of a lesion above C4, but there are many who have upper limb spasticity that a higher insertion would benefit. I even wonder if it would ease the tightness of "the Hug." (I know it's supposed to be a sensory symptom, but it sure doesn't feel "sensory" to me, it feels like stiffness.)

Did they offer you pros and cons of placing it that high...I'm just wondering who decides the level of catheter insertion (neuro or neurosurgeon), and what influences are involved in their decision?

I just realized I might be highjacking this thread, and if so sorry mercadies25. On the other hand, if you decide to go with the pump, it might be knowledge that will help you discuss placement of the pump with the neurosurgeon.

Hi rdmc,

My Dr. is the one who decided to insert the catheter up high. Never gave me any pros or cons except to say there were no guarantees it would help with upper limb spasticity or the hug.

I will say, it has helped in both the left arm, and I feel with the hug also.