BACLOFEN PUMP USERS!!

[mselinida]

Sorry y'all this is a long post and may be boringly technical.

I have been on the Baclofen pump since June.
I got help from 75 mcgm.

Between June and Dec. they would increase the dosage, the Baclofen would start working, but within a week the rigidity would be back. Another increase, within a few days the rigidity is back, and so on.

In December, at the time for the refill, the pump had flipped over and they had to go back in re-secure it.
Since then we have increased it over 70mcgm in a week and no relief of the stiffness.

I am up to 320mcgm with total stiffness.

Now they think the catheter might have moved from the intrathecal space, so it is dumping Baclofen somewhere in my spine, but not where it's going to help me.

My questions....
1. Has anyone had this much trouble getting their dosage regulated?

2. Has anyone had this many problems with the pump (although I know it's not the pump but the installation).

3. Does anyone have any idea what all this useless Baclofen may be doing to my internal organs? (Baclofen withdrawal from the pump may cause massive organ failure).

4. My hands are stiffening up. I wonder if it has to do with the big dose of Baclofen.

5. I am ticked off at my neurosurgeon. If I had the money I would sue him, but I'm using all my money for copays and deductables.

If anyone can answer any of these questions I would appreciate it.
My neuros try to not scare me so sometimes they aren't as forward as I would like.

Thanks

[hunterd]

make an appointment with whomever is overseeing your pump. With that drastic of an increase, I have to wonder if your catheter is connected. I just got my second pump, and I absolutely love the benefits!I cannot off the top of my head remember what my daily totals are, but I don't think they are as high as your increase. Please have this looked into.

[rdmc]

Sorry you're having issues.

You need a dye test ASAP. It's an easy test in the radiology dept. of a hospital and they inject dye into a side port of the pump and then follow it on a fluoroscope to make sure the catheter is delivering the medicine to the thecal sac and that there are no holes or leaks in the catheter.

I have times when it seems to me my upped dose doesn't last for too long and I have to go back and have it upped again. don't know why that happens other then spasticity isn't static and even if we were on oral doses there are days when spasticity is worse than others. I'm at about 150 mcg and get pretty good relief. Bob, who's our pump veteran says it took him about three years to get to the right dosage.

You mentioned your hands are stiffening up. where is your catheter placed? Mine is at T9 and it doesn't do much for my hands and the reason I ask is this. Baclofen withdrawal can cause all kinds of side effects, and increased spasticity is one of them. is the hand spasticity new?

I had a catheter come out 6 months after my implant. I woke up to a swollen abdomen, and the catheter had dislodged from my spine and had migrated to my abdomen, and was pumping a pool of baclofen there. As to the effect of the med harming other organs if it's leaking, I had no issues with the pool of baclofen in my belly, they told me it would disperse eventually. but I was hospitalized until I could have the surgery to redo the set up because they wanted to make sure I wasn't overdosing or suffering wothdrawal. Had to have the surgery redone to put everything. back in place.

As to it flipping, I've heard it can happen. Mine is "floating" ...at least that's what the physiatrist says so I wear a binder most of the time to keep it from moving around. At some point it decided to escape from it's pocket.

For me, even with all the trouble, it's been a life saver. And I'm no doctor but I'd say you need an explanation and test to determine why you're having all these problems. Hope you get to the cause of the problem and the sooner the better

PS...the nurse at my physiatrist has a daughter with CP and has a pump. she was following your pattern of continual increases and was up to 900 mags. they did a dye study and her catheter was leaking, and once she had it repaired her dosage was backed down to a reasonable dosage.

[BobOP]

Hi mselinida

I am sorry to hear you are having issues with the baclofen pump.

RDMC & Hunterd have some good advice. I have had the dye test done 2 times. It was pretty neat seeing the dye go through.

Like RDMC said, it took me awhile to get my dose under control. However, I have had almost the same dose for the last 10 years. I am on my 3rd pump.

I wish you the best & hope you get some relief soon.

Take Care, Bob

[bluegiraffe]

I've had the pump for 2 years.

Agree with the responses from Hunterd, RDMC and BobOP; would think there has to be more to the big increases not helping you - and would talk to your doctor to get the attention needed to find out quickly.

Hope you get answers and relief quickly.

[snowy]

Hi,
I have had my baclofen pump for 2 yrs. I have it for stiffness that I have had in my legs. It has helped me a lot. I think you should listen to your body and find out what's going on with your pump. I have not had an issue with it besides getting it to the right dosage which took awhile. When the weather changes then it seems I have to have the pump adjusted.
Hope you get answers soon.

[mselinida]

I went to the movement specialist a couple of weeks ago and did an xray to see if my catheter has moved. Luckily it's fine.

My doctor and I decided to reduce the Baclofen by 10% and it seems to be working.
One of the problems is that I have not been walking because of the surgery and the weakness, so my muscles have weakened.

Now i am working out my legs twice a day and I have seen an improvement.
I'm going back to the doctor next week and will probably get a bolus.

I'll let you all know if it helps.
Thanks for all the info and your support.

[naphappy]

Hope you get some relief and some answers soon.

I have had my pump for almost 4 years. My dose is over 500mcg. I use the higher concentration of Baclofen.

Last fall, I had to have my pump rate increased 4 times. I had the CT scan and an xray to see if it had moved, become dislodged or was leaking.

At one point, the neurosurgeon was checking for some rare event at the tip of the cath.

All these tests came back neg.

It was finally concluded, that since I went off my DMD almost a year ago, that the pump wasn't keeping up with my spasticity.

I have had other reasons to do the IVSM 3 times in the last year, but had not considered the increased spasticity as part of my relapses.

I used oral baclofen between appointments if it gets unbearable. Of course, using too much oral baclofen was the reason for the pump in the first place!

Hopefully, I can hold on and get BG 12 soon.

And I thoughts I would add, my pump schedule is very precise and a little tricky. My neuro who controls all my pump dosing always teases me about the math that is involved.

My schedule is no longer just a day rate and a night rate. I have increases and decreased according to my routine and activity level.

It so precise, that I use a lower dose in the mornings until about 1:00. The added tone is helpful. But with activity my spasticity increases so at 1:00 my pump dosage increases.

Around evening it is lower again but at night it increases to help with the spasms and aid my sleep. With morning comes a lower dose.... on and on and on...

If I venture from my rountine like sleeping in on a Saturday, my legs will wake me up because they begin to tighten up. It is like my internal alarm clock!

Please continue to monitor how you feel and what your body is telling you.

When ITB is working, it is fantastic. Hope you get some answers and relief soon.

[bluegiraffe]

For the 2 years I've had my pump; I've been at 140 mcg. I have the smaller pump with the higher concentration of baclofen to allow me to go for refills at the 6 month duration.

I always have more than enough baclofen to go longer than 6 months - and a few months ago went past the 6 month mark for my refill.

I found that I felt stronger in my upper body (usually weaker due to the baclofen) with no adverse affects to my legs - was close to 8 months.

After inquirying as to why 6 month is the recommended max between refills and heard some mixed messages - but sounded like that was what was tested and had to do with the shelf life of the liquid baclofen.

I concluded (not sure if it is the case) that maybe I felt stronger due to the baclofen weakening.

For my next refill; my physiatrist and I decided to go ahead and get the refill at my same dose of 140 and see if the stronger feeling was diminished - and if so I would come back and get the dose lowered. My new found strength did diminish and I went back to have it lowered a month later.

I thought we would lower it just a bit - but my physiatrist suggested to lower it 20% - to 112 mcg. I made sure I had a standing appt in 3 days to give it time to take affect and see if it compromised my spasticity relief. I was a little nervous I would get increased spasticity and pain back in my legs.

Its been 2 months on this lowered dose - and no adverse symptoms - some strength but not as much as I noticed earlier. I had some leg spasms at night when sleeping but they seem to have gone away.

My Physical therapist doesn't see any adverse signs in my legs and lately can stretch them further and easier.

I'm thinking of getting it lowered a bit more to see if my rational was accurate.

Interesting that after all this time.

Time will tell I guess.