When do you get Baclofen pump?

[mjan]

For those of you who have a Baclofen pump what occured to warrent one? How many meds were you on prior to the pump, was your dose increased first?

Just curious as to the criteria that says its time to try the pump. How bad was your spasticity?

Thank you for any and all responses,

Jan

[nappy]

ITB

Jan-

I have had trouble with spasticity for some time. Mine is very touchy.

It increases if I am too hot, too cold, tired, inactive, too active... if I am constipated or even if my pants are too tight!

I was up over the limit recommended for oral Baclofen for quite a while and was taking 120-150 mgs. a day and I couldn't make any headway with the tightness.

I did deep tissue release, and botox for two years.

But the problem with taking that much oral Baclofen was that in order to take enough to get relief, everything else was too loose. I would get too tired and uncoordinated.

I also took Keppra and Zanaflex at night to try to get some sleep.

Once I did the ITB test it was obvious that I could benefit from the pump. I haven't regretted it at all.(The spinal headache I could have done without- it required two blood patches.)

I need to get it refilled every six months and can get it adjusted whenever I need it.

[rdmc]

Hey Jan,

There used to be a great thread that someone started entitled "How bad was your spasticity when you got the pump" (or some fair facsimile of that). I was really enlightening, but I think it's been archived.

I posted this link a few months ago, it's also an interesting article basically stating that neurologists may be waiting too long to suggest the pump. That it could be of more help to people in the 4.5 range of the EDSS scale. Here's that link:
http://msj.sagepub.com/content/early...510395056.long

Before the pump I couldn't pick my foot up more than an inch off the ground, and couldn't put my right foot in front of my left, plus my right ankle turned in at about a 45 degree angle. Yet I didn't think I had severe spasticity (at least not in my mind.) But I knew I was very limited in my mobility, and was in pain all the time from the spasticity. We had upped my Baclofen until I was falling asleep at the computer during the day. So one of my doctor's asked how does your spasticity limit you...and then I started thinking of all the things I couldn't do because of the spasticity and I realized it affected most of my life (I guess that was my epiphany that maybe I should consider a pump.)

Then I had the pump trial...WOW, amazing. The thing is I never had anywhere near the results from the highest dose of oral baclofen that I get from the pump. The surgery's not bad, as surgery's go . It was hard work at first because my muscles all had to be stretched again and I had to learn how to walk normally (I was used to sort of shuffling and taking little steps.) Full stride brought about lots of hip pain. But I'm very
comfortable with it now. Recently had it turned up a couple times at the beginning of the hot weather, and I'm not having spasticity in my legs or pain (which is usually the case in the summer.)

You should get plenty of replies...maybe an admin can look up that old thread I mentioned if it's still available.

[Sequoia]

Here's the aforementioned long thread; I dug it out of the Archives.

http://www.msworld.org/forum/showthr...=baclofen+pump

[scampergirl]

I just went for a consult about getting a baclofen pump. I'm on the fence about what to do. I have, as my doctor says, severe spasticity. Unlike some people I don't have much pain, but I definately have trouble with my walking. I am currently on 130 mg of baclofen daily, I tried Botox, which worked great the first time but not so much the second. I don't think I'll try the third time.

Having a pump seems pretty invasive, but if it makes me feel better then maybe I should.

[rdmc]

Here's the aforementioned long thread; I dug it out of the Archives.

http://www.msworld.org/forum/showthr...=baclofen+pump

Sequoia...thanks for finding the thread, but when I followed the link this is the message that showed up:

Invalid Thread specified. If you followed a valid link, please notify the administrator

[mjan]

Thanks for your reply, info and link. Did the Pump help with your pain too? I also have spinal stenosis which is the MOST pain I experience and may be indirectly helping more with spasticity. My "S" is mild-mod as a result. But I notice when I sit too long, or drive my ankles lock up and it takes awhile to unlock them.

Is the pump inside your abdomen? I may be having laproscopy surgery this summer.. so is it done laproscopally?

Thanks for you quick response~ Gratefully, Jan

Hey Jan,

There used to be a great thread that someone started entitled "How bad was your spasticity when you got the pump" (or some fair facsimile of that). I was really enlightening, but I think it's been archived.

I posted this link a few months ago, it's also an interesting article basically stating that neurologists may be waiting too long to suggest the pump. That it could be of more help to people in the 4.5 range of the EDSS scale. Here's that link:
http://msj.sagepub.com/content/early...510395056.long

Before the pump I couldn't pick my foot up more than an inch off the ground, and couldn't put my right foot in front of my left, plus my right ankle turned in at about a 45 degree angle. Yet I didn't think I had severe spasticity (at least not in my mind.) But I knew I was very limited in my mobility, and was in pain all the time from the spasticity. We had upped my Baclofen until I was falling asleep at the computer during the day. So one of my doctor's asked how does your spasticity limit you...and then I started thinking of all the things I couldn't do because of the spasticity and I realized it affected most of my life (I guess that was my epiphany that maybe I should consider a pump.)

Then I had the pump trial...WOW, amazing. The thing is I never had anywhere near the results from the highest dose of oral baclofen that I get from the pump. The surgery's not bad, as surgery's go . It was hard work at first because my muscles all had to be stretched again and I had to learn how to walk normally (I was used to sort of shuffling and taking little steps.) Full stride brought about lots of hip pain. But I'm very
comfortable with it now. Recently had it turned up a couple times at the beginning of the hot weather, and I'm not having spasticity in my legs or pain (which is usually the case in the summer.)

You should get plenty of replies...maybe an admin can look up that old thread I mentioned if it's still available.

[mjan]

Here's the aforementioned long thread; I dug it out of the Archives.

http://www.msworld.org/forum/showthr...=baclofen+pump

Thanks for the link..but it did not work for me either.
Hmm.. any ideas?

Jan

[Sequoia]

Sequoia...thanks for finding the thread, but when I followed the link this is the message that showed up:

Invalid Thread specified. If you followed a valid link, please notify the administrator

That's weird. I just clicked on it to check and got the desired thread.

Did you paste it into your browser instead of clicking on it? If so, that would explain why you got "invalid thread specified"...that's what happens when you try to access an archived thread from outside the board.

[rdmc]

Jan, My pain was from spasticity and it was eliminated once I got the pump tweaked up to an acceptable level for me.

It's a regular surgery...an incision on your abdomen, an incision on you spine, and I had a third small incision on my side...but the third one is unusual. The pump is about 3 inches in diameter, and I didn't measure my belly incision, but I'd say it was 4 or 5 inches.

But believe it or not after a few months you absolutely forget it's there.

The good news is during the trial you really do get a chance to see if it's going to work for you or if it's not worth the surgery.

[Sequoia]

Okay, I just tried the link again and this time I got the "invalid thread" notice. I have no idea what's going on.

I'll run it by Sparky and see if she can figure it out.

KoKo tried the link several times and it worked fine for her. I tried it again and it worked for me too. So anyone who can't get it to work the first time should keep trying...it's a really good thread!

[bluegiraffe]

Hi,
I had severe spasticity and severe pain in my legs; was afraid to look into the option of the pump that was suggested to me by my doctors.

Finally moved forward with the trial and the surgery this past January (rdmc and I have shared alot of our experiences, being so close in our timing in other posts if you do a search). I am a BIG fan of the pump, it has taken away all my pain ! Oral baclofen never really helped me much at all, nor Zanaflex or others but the baclofen trial proved I was a candidate.

Being such a wimp that I am; I didn't have much of a choice to go through with it - I'm glad I did, don't notice its there and since I have the pediatric size have had 2 refills already. Next visit I am asking about getting stronger concentration refilled with the hopes I can go longer than 2 months.

You may want to goggle Medtronic and read more on the pump. There have also been good conference calls re: the pump and spasticity hosted by msworld - think I saw another coming up in the newsletter, and you can maybe listen to replays.

Keep in mind a good surgeon is key and the dose that is dependent on your condition will indicate how much and how loose you will be. That is all part of the pump and management specific for each person.

[mjan]

Thanks bluegiraffe and others for your help. I already had signed up Medtronics emails. Now my concern is maybe I am having MORE spasticity problems than my spinal stenosis. The pain is SEVERE w/o RX Diclofenac. I would not walk, sit or lay w/o it. I tried. BUT its not for chronic use and it's been messing with my stomach.

Seems I am used to putting up with more pain/stiffness and forget to take more Backlofen. I am only on 10mg of baclofen 2x a day with possibility of 3 times..so LOW dose. BUT remember I take RX Diclofenac for my lumbar spinal stenosis...which is released in my system to cover 24 hours. And w/o it, I cannot walk/sit or lay down w/o severe pain. Diclorfenac makes your drowsy too.

I feel pain/spasms mostly behind both thighs which tighten up and spasm and then in my right leg/foot. My spasticity locks up my ankles esp if I sit too long. Also think the spasticity goes UP my back as well.

Now I am wondering if this is spastiticy and not so much the spinal stenosis? I dont want to depend on the Diclofenac/bacflofen orally as its tearing up my stomach.

My pain is a 10 w/o RX Diclofenac and my spastiticy is growing worse, more often. Takes me hours to just get going in the morning. I do stretch on my "giselle" machine.

My MAIN pt is I dont want more and more meds as I have interaction issues due to another condition=dysautonomia and kidney problem where I waste electrolytes.

Any ideas? Was thinking of seeing my orthopedic doc who d/c me cuz he said my issues were more neurological. My MS doc says its more muscular/skeleton and will not RX the Diclofenac. Thankfully, my PCP does for me.

See why I am confused? Maybe its more spasticity than spinal stenosis?

Jan

[rdmc]

Jan,

I understand the predicament as to which is causing your pain. My mom had spinal stenosis and suffered horribly with it.

The beauty of the Baclofen pump is that you'll find out during the trial if the med has an effect. They give you a dose of 50 mcg in your spine, and then evaluate you over the next 4-6 hours (they also evaluate you before and check your range of motion)...then they compare it to your range of motion after the med is given. With me it gave me mobility, and it gave me pain relief, so I was pretty confident going into the pump surgery that I would get pain relief. It's like test driving a car...but it's "test driving" the med...you get to feel how it works before you commit to the surgery.

The reduction is dosage is amazing. You're getting micrograms instead of miligrams which is approx 1/1000 of the oral dose, and it bypasses the stomach, of course, so no stomach problems, and no sleepiness (although I have noticed the literature says that you can have drowsiness with the pump...it didn't happen for me.)

Some folks have baclofen and pain med in their pump...I don't know if anyone on this board has that, but I've seen it mentioned on another forum. All my leg pain must have been spasticity related because once the dose was tweaked right, the pain went away.

I sure wish we could access that old thread, but like bluegiraffe said, she and I participated in some other threads about the time we were deciding on getting the surgery....so I'm sure they're still around.

[rdmc]

Jan, I went into search and came out with a couple of those threads that bluegiraffe mentioned. Here's the links, they're still active.

http://www.msworld.org/forum/showthr...=baclofen+pump


http://www.msworld.org/forum/showthr...=baclofen+pump