Baclofen pump FAQ

[McDuff]

Leedogg, wow that is weird. Any new news on whether it's pumping?

I just got back from my neurosurgeon appt. He is going to replace both the pump and the catheter, front to back. He said he has to open the pump pouch anyway to get at the catheter, so might as well do the pump too, 'specially since I am 5yrs in on this pump. Save me another surgery in 1-2 yrs.

Bad news, he's so busy, it won't be until june 3rd.

[Leedogg]

Mcduff, on friday when I had another x-ray done, the dye was able to get up to where it enters in my spine. But it still wasn't in my spine or brain.

SCI-Nurse or anybody that may know, does it normally take 48-72 hours for the medicine to get to my spine from my pump? At a dosage rate at 290 mmg a day?

[sjean423]

It shouldn;t take that long. When I first got the pump, it started taking effect by the next day. So less than 24 at least.

I had the concentration changed, when it was refilled a while back, and they had to do some calculations to determine when the new, more concentrated, med was taking effect, and I am not positive, but I think it was 5 hours. Mine is only about 180 a day.

[rdf]

Mcduff, on friday when I had another x-ray done, the dye was able to get up to where it enters in my spine. But it still wasn't in my spine or brain.

SCI-Nurse or anybody that may know, does it normally take 48-72 hours for the medicine to get to my spine from my pump? At a dosage rate at 290 mmg a day?

Lioresal's website (brand name for baclofen) claims it takes 6-8 hours for the drug to reach your spinal cord. They also say it can take 24-48 hours for maximum effect. I'm surprised you have no withdrawal symptoms. Aren't you suffering spasms and spasticity?

[rdf]

Leedogg, wow that is weird. Any new news on whether it's pumping?

I just got back from my neurosurgeon appt. He is going to replace both the pump and the catheter, front to back. He said he has to open the pump pouch anyway to get at the catheter, so might as well do the pump too, 'specially since I am 5yrs in on this pump. Save me another surgery in 1-2 yrs.

Bad news, he's so busy, it won't be until june 3rd.

Glad they're going to replace everything McD. I'm sure that'll do the trick. I just had my surgery yesterday, they had to open the pump pouch, too, and my back to hook up the one piece catheter. But so far, so good. I tried to get them to replace the pump, too, but they said no...it's only 2.5 years old. Oh well, quit your whining, I had to tell myself.

Sorry you have to wait McD, that really blows. Maybe you can tell him to schedule you in if there's a cancellation, or make clear to him if there is a surgery that isn't urgent or an emergency, and doesn't involve a child or a senior scheduled before you, to try to fit you in. It's worth a shot. I know how much hell you're going through buddy.

I wish you the best in finding relief, I wish everyone with troubles that a solution will soon be found.

[bailey5774]

ok so i went to my rehab doctor and we have decided that the location of the pump catheter is not a good one!! so that means he's going to call the surgeon and tell him it needs to be moved down. it's causing too many problems which isn't allowing us to turn the pump up to where i need it. so spasms are really bad right now. now i'm just waiting to see when the second surgery is going to be. we will see.

[rybread]

Here is a picture of the scanner used to program the pump:


Here is the syringe, tube and needle that they used to fill the pump. It goes in the center pork on the previous pictures I showed:


I hope these pictures that I've been posting help someone who is curious. I was going to have the doctor take a picture of the needle in my side, but I forgot about it until it was too late and she wouldn't put it back in. LOL.

[McDuff]

Rdf - yeah I am on the "if cancellation" list, doubt they'd bump anybody for me though. Glad your surgery went well, too bad you couldn't get a new pump, but yeah 2.5 may be a little early.

[rdf]

ok so i went to my rehab doctor and we have decided that the location of the pump catheter is not a good one!! so that means he's going to call the surgeon and tell him it needs to be moved down. it's causing too many problems which isn't allowing us to turn the pump up to where i need it. so spasms are really bad right now. now i'm just waiting to see when the second surgery is going to be. we will see.

Good luck bailey, I hope they can get the catheter placed in the right spot. Hope you have surgery soon.

McD, yeah, it's a little early, but I'm a greedy bastard and want it all done now so I can stay the *uck away from hospitals for many, many years. Hopefully they'll have a pump that lasts 10 or 15 years in the future - but I doubt that'll happen.

Good luck, and thanks for helping out our buddy in Cali. That's a good thing you and a lot of other people from CC have done.

[Leedogg]

Lioresal's website (brand name for baclofen) claims it takes 6-8 hours for the drug to reach your spinal cord. They also say it can take 24-48 hours for maximum effect. I'm surprised you have no withdrawal symptoms. Aren't you suffering spasms and spasticity?

yes the spasticity is bad, I've recently started taking bacolefen (20 mg by mouth two times a day) And thats helped some. I'm going to tell the doc on monday, that the baccolefen helps loose me up some. And that I just want to get the cathedar replaced. (and/or pump) Because for it to take 72 hours for lioresal to get into my body. (if it gets in there) Is too long I think. And I'm still not feeling like I did when I first had the pump implanted.

[rdf]

yes the spasticity is bad, I've recently started taking bacolefen (20 mg by mouth two times a day) And thats helped some. I'm going to tell the doc on monday, that the baccolefen helps loose me up some. And that I just want to get the cathedar replaced. (and/or pump) Because for it to take 72 hours for lioresal to get into my body. (if it gets in there) Is too long I think. And I'm still not feeling like I did when I first had the pump implanted.

Once it makes it through the catheter, whether it takes 6 hours or 24 (or 72 as you posted), it's a continuous stream of baclofen from then on. So once it's up there, the relief will be constant - if the pump and catheter are working properly. I'm on 300 mcg/day, just 10 more than you, and I'm doing good.

[Leedogg]

YES!!!!!!!!!!!! I think I finally won the battle with the docs. I got an appointment with the surgeon in Charleston on the 15th. The rehab doc finally thinks I am having an inconstant flow of bacolfen. Now I just got to convince the surgeon that the cathedor and/or pump needs to be replaced. And I got to decide when I want to have the surgery. With the NASCAR race coming to Darlington on Mother's day weekend. I am NOT going to miss that. So I'll probably have it after that.

[McDuff]

Congrats on a battle well fought. Yep, definitely can't miss NASCAR, I am heading for TMS tomorrow morning. Unfortunately I AM going to miss the Indy Car race at TMS due to my surgery being 3 days before it.

[bena]

i'm having my pump put in next month. wish it could be sooner,hard to get a dr app.the test went great. i would love to sit around with out my lower body jumping around.i'm t-8 complete injured feb 08 at work. maybe i can drive without jumping out of the seat. new at this para thing any advise would help thanks ben

[rdf]

i'm having my pump put in next month. wish it could be sooner,hard to get a dr app.the test went great. i would love to sit around with out my lower body jumping around.i'm t-8 complete injured feb 08 at work. maybe i can drive without jumping out of the seat. new at this para thing any advise would help thanks ben

Glad you're getting a pump for your spasticity bena. If you have any questions related to SCI or the pump, just shoot em at us here, or in the other forums. Glad you found us, sorry you had to, as the saying goes.