3 replies to this topic

[jeanne]

i have severe spasms and was taking 80 mgs/day of oral baclofen. everyone is, "get the pump, get the pump!" phooey.

my spasms have caused contractures in my legs, severe enough to dislocate my left hip on 8/14/2010 and yes, i've been on bedrest that entire time. i've missed 3 funerals, two weddings, a christening, numerous birthdays and other family/friend functions because of the dislocation.

after many visits to different drs, in 12/10, i finally found one who would do the surgery to fix my hip provided i get the pump and get the spasms under control. i find a dr to get the pump - 2 days prior to my surgery on 2/15, his office calls and says dr has family emergency and can't do surgery (turns out he had a stroke! imagine the fun that would have ensued had that happened while he was doing my pump, shudder...)

his office recommends a colleague, we schedule for 3/4/11 test dose, 3/5 pump insertion. pump goes in, i go home with jelly legs (yay!) and considering the previous high tone in my legs that were like a bear trap (many a glove lost between my knees, lol) i'm happy until...3 days after i get home, little flutters start, then full-fledged, all over jackknifing spasms worse than before the pump. i get a dosage increase that my body laughed at. i continue with 10% increases... oh and don't let's forget the 5-day hospital stay in between due to cellulitis in the incision b/c the skin grew over the stitches and the nurse spent an hour picking tiny pieces of nylon out of the cut. i was still finding bits weeks later as they surfaced.

cut to memorial day - massive fever - 104. i think i have a kidney infection but it turns out to be a staph abcess behind the pump and they want to take it out but i flat out refuse. i waited a long time for that pump and it was my hope for the hip surgery. why can't they aspirate? well, never mind, the abcess EXPLODES, and after a 10 day stay, they send me home with a PICC line and a 4 week round of 3x/day IV antibiotics. after antibiotics, ANOTHER abcess. which resolves by busting open too and now i'm currently taking a 4 wk round of oral antibiotics.

during all this time, no dosage increases are happening, the spasms are worse than ever even tho i'm now taking 120 mgs oral baclofen. and i'm contracting again. granted, i'm prolly a 1-in-a-million case, but do YOU want to be the next one?

THINK it over very carefully before you do it. just sayin'.

[russ1]

Sounds like a similar story to mine except I didn't get the infections. All ok for 10 days then the spasms were back - had about 10 dose increases before they worked out the cath tube between my spine and the pump had broken. Back for another op and another 2 weeks stay in hospital and it was all ok. Sounds like yours isn't delivering the baclofen to where it needs to either. Hope you get it sorted out. In spite of everything it's the best thing I've done since SCI - changed my life for the better in so many ways.

[wheelaussie]

Hi Jeanne, I had a pump put in in Dec 2004. I went from 120mgs [plus others] a day to spasm free. After 26 years of jumping all over the place - it was magic. I had the pump replaced last year which was fine until the day I was to be discharged. I starting pouring sweat & shaking - the classic signs of dysreflexia. 24 hours later, I was fine. Turns out that the spinal fluid had shot back up the cath tube - despite the tube being primed - no baclofen was getting into my spine. Basically - if spasms return, my experience has a loose cath tube or empty pump.
Vicki

[mkatglo]

Jeanne,

I had all the same problems you did, did the trial, had to spend a night in hospital because the baclofen worked TOO well ;)

In 2006, I had the pump placed, went home a new woman! I had been struggling through the house using two walking sticks, stiff rigid legs, etc. 2 weeks in, my symptoms came back, and I had to have the catheter replaced. I went home with a staph infection, and February they took out the pump, and I did the IV antibiotics, struggling with oral meds to meet the benefits I had achieved with the pump. End of March, pump back in on the other side (once there is an infection, they don't put it back in the same place), and 5 years later, I would do it all over again. My quality of life is so much better, I even gave up my walking stick for a time (although I really can move when I use it).

I have been on the same dose, and rate now since mid 2006. The only change I have added was a small dose of morphine to help with the restless legs-not pain. I get a new pump in the next 14 months, and I am not concerned at all about the replacement because I remember what it was like before I had it.

Sorry your experience was so lousy, I just wanted to share my similar experience and encourage you to persevere!

Mary