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Thread: Baclofen pump problems and questions

  1. #1

    Baclofen pump problems and questions

    IM a C-4 walking quad, with a baclofen pump. I have always doubted whether it has ever been working correctly however that is too long of a story so I will give you a quick history and hopefully ask the few questions. I have had a baclofen pump for approximately two years. My baclofen level has never reached a stabilized dosage and I have always questioned why.
    At every refill date I have always received approximately a 10 percent increase in dosage. At times dosage increases also happen between refills. However I have never gone more than one refill cycle without a dosage increase. I have been told by many sources that the speed of my search for a stable level has gone far too slow however.
    My spasms are relatively controlled by a low Valium dosage and most of my physical problems consist of being extremely stiff. On the dates of a baclofen increase I will gain some relaxation for a short period of time and then I quickly begin to stiffen backup. As I stated above I have always required a increase.
    About one year ago I was in the area of approximately 100 micrograms for 24 hours. However I am now at approximately 550 micrograms for 24 hours and then still being told that this is a moderate dosage. Two weeks ago I was at 500 micrograms a day, I received a refill and also my customary 10 percent increase bring me to 550 a day. At that time I was requiring a small oral baclofen dosage just to allow myself some flexibility. Upon receiving my refill and new dosage I very quickly became extremely stiff and received absolutely no spactisity relief whatsoever and actually my condition retardanded itself. After explaining my problems to the doctor managing my baclofen pump they did agree to refill my pump with a new solution and this alleviated some of my problems however I am still extremely stiff. And getting worse by the day.
    I have always questioned whether I could possibly be having catheter problems and am always told this is extremely unlikely. However I have managed to get one x-ray and one CAT scan of my delivery system. Exposing no problems however I cannot seem to get to dye test that I have been told is the proper way to check out this problem.
    I am now at 550 micrograms today with no relief insight, dosage increases do not seem to be helping. It seems to me that more relief should have been achieved. Oral baclofen does well at very low levels so I find it difficult to believe that my liquid baclofen is being properly delivered and have always questioned a possible leak. I have recently moved from Atlanta area where I had a trusted physician in a little town called warm Springs Georgia. And am now living in Pensacola FL. And I do not have a good feeling for my spinal care physicians here. In just a few short months I have gone from approximately 350 micrograms a day to 550 a day and the only response I get from my physicians is to continue to turn my baclofen pump up.
    Please give me some thoughts on my situation. I have been told that my levels are acceptable however they seem quite high considering that at times much lower levels gave much better relief. It seems to quickly for me to a built a tolerance to baclofen. Particularly since at least until my 550 micrograms level increase at least I was getting some short-term relief even that seems to have disappeared practically overnight. Do I just continue to allow them to continue increasing my levels,? Am I possibly building up a tolerance? When I was in the 200 to 300 microgram range increases seemed more understandable however I am now questioning whether or not we should be searching for some possible other problems.
    My current spinal care physicians do not impressed me. And I am a bit confused on how to look at the situation. As you can imagine there is much more to this but please comment on your thoughts of my situation. Or is it normal for initial stabilization to be above 600 micrograms because there is no doubt that is where I will be in the very near future. Thank you very much, rob

  2. #2
    Hi, Rob,

    I don't have any answers,but with your permission, i can show your post to the nurse who does my son's pump care and refills. She's very knowledgeable, and i would trust her opinion. Please let me know if that's okay with you.

    Where do you live?

    Tough times don't last - tough people do.

  3. #3
    is fine by me thank you, in the pensacola florida area......ROB

  4. #4
    my email adress is it has changed from when i entered my profile and i never thought to change it.

  5. #5
    Absolutely- insist on a dye test. My husband has a pump and we've had almost every complication imaginable. The pumps have a tendency to break where the catheter is attached to the pump itself.

  6. #6
    Senior Member TD's Avatar
    Join Date
    Aug 2001
    Phoenix, AZ, USA

    Get the dye test

    Insist, hell!! Demand a dye test!! I suffer severe spacticity, have a pump, and am getting 740 ug per day. I have had my pump for nearly 7 years and swear by it. There is definitely something going on and you should find out what it is. Do you have a physiatrist? Is he/she fully qualified to care for your pump? I think a second opinion would be something to consider.

    "And so it begins."

  7. #7

    baclofen pump problems and questions

    rob12d2 - I would agree with your assessment...that something does not seem right. However, I do not have experience with baclofen pumps but two of our nurse team have this expertise..both PLG and EMK. I will ask them to comment on your concerns and questions.

    To find physicians in Florida, you may want to contact the Florida SCI Resource Center, which serves the state. Their Executive Director is someone who is many years post SCI. Go to: CRF

  8. #8
    I am currently managing 85 patients with baclofen pumps and can give you my thoughts on your situation.
    When patients present to us with symptoms such as yours, we would do the same thing....increase dose. A 10% increase is very conservative however, and up to 30% is very much within reason. However, when someone like yourself has had several adjustments and has little benefit, I think it is time to do a diagnostic dye study. Fractures and kinks don't always show up on plain xray. I hope you have a pump with a catheter access port. This is the best way, in my opinion, to do a dye study. Once you access the side port, if you can't draw CSF back easily, you already have your answer. The catheter needs to be replaced. Often the problem is right in the pocket and can be fixed without having to re-open the back incision. If CSF freely aspirates into the syringe, then injecting contrast (dye) may show a small hole or fracture in the catheter.
    When you have your pump refilled, is the amount which is aspirated from the reservoir equal to what the computer says it should be? More drug in the reservoir than expected can indicate that the drug isn't being delivered correctly and points toward a kink in the catheter. If everything checks out with the dye study, then I would bolus dose with 50 mcg through the pump. This is the same as the screening trial dose and you should see a significant change in your tone. If that is successful, then you probably should be brought up by larger increases than you have been. I have several SCI patients who are over 1000 mcg/day and need this much to maintain. The other thing which works very well for some people is intermittent bolus doses. We had a young woman who didn't seem to respond to increases no matter what we did. We had done all the dye studies and everything checked out fine. We then put her on bolus doses every 4 hours and her tone has been under control ever since. We usually take 60 - 75% of the current dose and divide that amount into 4 - 6 doses over 24 hours.
    If you have a dye study, make sure the team that is doing it has some experience, or has the Medtronic clinical specialist there to guide them.
    These are some of my thoughts. I certainly hope you can get this sorted out. The pump is such a wonderful therapy for spasticity when it is working the way it is intended. Let us know how things turn out. (EMK)

  9. #9
    rob12d2: I agree with EMK on all accounts. At our facility we have worked with well over 100 intrathecal baclofen pumps. A 10% increase is a relatively low dosage increase. Has the physician ever tried anything higher? How about a programmed bolus in the clinic? If so, what were the results?

    I am sure your MD has been cautious because you are an ambulator and doesn't want to decrease any spasticity/rigidity that assists you with upright posturing and gait. It is time to seek both a baclofen pump rotator evaluation and catheter dye study. If these both prove to be normal, then ask your MD about having a CT Myelogram done to assess CSF flow and possible obstructions. PLG

  10. #10
    Junior Member
    Join Date
    Jun 2002
    West Islip, NY USA

    Baclofen pump

    I have had my baclofen pump for almost 2 years. It was my last
    resort. I was on the highest dosage of oral baclofen that could
    be prescribed and it did not help the spasticity. I am a c 4/5.
    Since I've had the pump it has helped the spasticity. I am now
    at 700mg per day. My doctor tells me the average runs 400-800 mg
    per day. He tells me he does have people on 1000 mg per day. I
    wouldn't be afraid of increasing the dosage if it helps. What I
    have found is there are other things that will increase my spasticity.
    Stress, constipation to name a few. I now can move easier without
    having the side effects of the oral baclofen. Good Luck to you!

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