Results 1 to 9 of 9

Thread: Baclofen pump advice

  1. #1

    Baclofen pump advice

    hope this is in the right place.

    Hi,

    I'll be seeing a pain management doctor 2/1 in regards to a baclofen pump. My neuro says that getting a baclofen pump is the best chance I have of staying able to walk, the little that I do, I already use a wheel chair most of the time.

    My biggest question, concern, is will I feel the pump and will it bother me?

    I'm rather on the slim side. 5' 11", but only 155. I stil try to do a lot of streching and sit ups. I have a bad back, all the sitting I do, so my chiropracter encourages me to do sit ups and back strengthening exercises as much as possible. I was a nationally ranked triathlete 15 years ago, and I love working out, except that now days my Primary Lateral Sclerosis, my spasicity and mobility don't allow me too. But I would if I could.

    I assume that my mobility and walking may very well improve with the pump and if so I'd like to be able to start working out to some extent, but will I be limited in working out, weigts, stretching, stomach and back exercises?

    Thanks for your help,

    Mike

  2. #2
    Have you talked this over with your SCI physiatrist? I would want their input on this too. A baclofen pump should be considered last resort, only after all other spasticity management drugs and methods have been tried. I assume you are doing doing stretching and ROM exercises, standing at least an hour daily, proning for a hour a day at least, etc?

    If you are very skinny, the pump may show on your abdomen. You will feel it there if you have sensation, and of course you can palpate it (feel it) with your hands. You would not feel the pump running or the fluid flowing into your CSF space around your cord.

    It is critical that you work with a neurosurgeon is is very experienced in implantation of the pump, and that you have an on-going relationship with either him/her or a SCI physiatrist who can do your programming. Finding just the right settings and adjustments of the pump may take a number of weeks/months, and it may require periodic adjustments in addition to the every 3 month refills. If the dose is too high, it can actually interfere with walking or use of your strong muscles....too low and it is ineffective. The pump can be set for up to 15 different rates daily, so it works best if you have a set routine so that you can have the rate set for when you need more or less spasticity control.

    Major problems to be aware of include the risk for catheter displacement/breakage/kinking, pump failure, overdose treatment and management, and catheter induced infection, which appears like meningitis.

    (KLD)

  3. #3
    Thaks KLD,

    What is an SCI Phyciatrist? I've seen a number of neuros, a geneticist, a rheumatologist, another pain management doctor and a few others, but I forget what they did, but I never heard of a SCI Phyciatrist.

    And boy the
    major problems to be aware of include the risk for catheter displacement/breakage/kinking, pump failure, overdose treatment and management, and catheter induced infection, which appears like meningitis
    sure opened my eyes .

    I mean I am already in a wheelchair, but at least I'm alive, those major problems don't sound good. I'll definetly go over everything you mentioned with the Pain Management doctor I'm seeing next week.

    Thanks,

    Mike

  4. #4
    Senior Member rdf's Avatar
    Join Date
    Jul 2001
    Location
    Someplace between Nowhere and Goodbye
    Posts
    12,961
    Mike, I've had a pump for a decade or so. Was a godsend to me. Good luck. You should contact medtronics, the company that manufacturers most pumps. They'll be able to give you all the info you need

    A physiatrist is the type of doctor who usually oversees spinal cord injured people's medical needs.
    Please donate a dollar a day at http://justadollarplease.org.
    Copy and paste this message to the bottom of your signature.

    Thanks!

  5. #5
    A physiatrist is a physician specializing and board certified in physical medicine and rehabilitation (PM&R). They can specialize in a variety of sub-specialties such as pediatric disability, stroke, TBI, etc. but a number specialize in SCI. A physiatirst is usually the main doctor when you are at a good rehabilitation center, and is an excellent physician to have on your team to help you deal with rehabilitation and physical medical type issues. Some are also sub-boarded in SCI Medicine, which is an added plus.

    (KLD)

  6. #6
    Senior Member wheeliecoach's Avatar
    Join Date
    Dec 2005
    Location
    East Haven, CT
    Posts
    2,600
    Mike-

    Welcome to the fun world of PLS! I am sure you and I can basically tell the same story of our fun to get diagnosed. Anyways...welcom to CareCure!

    As far as your question...I do not have the pump...and I do not walk much anymore. I am on Xanaflex for my spasms...and when I do walk I have AFOs and crutches. However, I know someone who has the pump...and you can definitely see it (I am guessing she feels it too). She calls it her "hockey puck"...although it is an older version of the pump...I would assume that it may be the same.

    Anyways...I would definitely see a physiatrist. Mine is a lifesaver and actually listens to what I have to say. Good advice here. Please let me know if you have any questions as far as PLS...there sure aren't many of us...but at least we can stick together and help one another.
    "Unless someone like you cares a whole awful lot nothing's going to get better. It's not." - Dr. Seuss

  7. #7
    Senior Member
    Join Date
    Dec 2003
    Location
    Covington, Georgia
    Posts
    399
    Hi Mike,

    Welcome to the forum. I am a C5-C7 "walking quad", 3 1/2 yrs post. I walk with a cane because my right side still hinders me. I was told 2 yrs ago by my physical therapist that I wouldn't walk without my cane because of my spasms. I recently had the trial done for the pump and it was beyond all of my expectations!!! I walked down the hall without my cane, with more speed and a more normal stride. My hips even moved the way they are supposed to !!! I don't think my physiatrist even realized how much my spasms were holding me back! I am SOOOOO excited!

    I have been on 30 mg of baclofen 4 times a day, which I am told is a very high dosage and my spasms were still causing muscle cramps. I tried zanaflex for a few months with no relief at all.

    I also have extreme fatigue and "brain problems" (very forgetful, unable to find the words I'm looking for, using the wrong words) as side effects from the baclofen. It will be a relief to have my intelligence back and be able to get through the day without being so darn tired!

    I meet with the neurosurgeon on Feb 20 to discuss the results of my trial and schedule the surgery. Two weeks after the pump is put in I will be taking a month off of work to do physical therapy 3 hours a day, 3-5 days a week. Hopefully between the 2 I will be rid of this stupid cane for good!! (Along with regular visits to a gym to continue building/keeping strength in my right side. I'm just too worn out working full time and being a single mother to 7 yr old twin boys on top of my fatigue to do t right now)

    I, too, was wondering about how it would feel to have the pump in. I have other questions, too. I could wait to ask the neurosurgeon, but I'm so excited I want to know everything NOW!!! lol

    Will weight loss affect the placement of the pump at all? I'm hoping to be able to lose about 20 lbs once I have the energy to work out.

    Where exactly do they fill the pump? I know there is a catheter that comes out to fill it, but is it in the front or back?

    How far will the catheter stick out? Does it need to be capped at all to prevent water from getting in?

    I know there's enough medication in it to last 3-6 months, but do I have to just wait for it to run out, or is it something that we can plan on in advance? Luckily, from the results of the trial, it won't take much at all in the pump to control my spasms so it won't have to be refilled as often.

    Once again, I AM SOO EXCITED!!!! I'm really hoping that this is the answer to my prayers. I know that I am very lucky that I have what I already do have, but it would be wonderful to be able to get rid of the cane.

    Good luck, Mike. I hope the pump will help you beyond your expectations, too. Please let me know how it works out and I will give an update on how mine is going. Thanks everyone.

    PS I see an awesome physiatrist at University of Michigan, a model spinal cord injury center. He has been with me every step of the way and I have total trust in him and anyone her refers me to. I think of him as the "Wizard of Oz" of spinal cord injuries. If any of you are around Ann Arbor , MI and need a good physiatrist, his name is Anthony Chiodo at The Spine Center (734)936-7010. He is a WONDERFUL doctor!
    Last edited by TINAMARIE; 01-24-2007 at 10:12 PM.
    Tina
    C5-C7 Walking Quad - Very Incomplete
    Aug '03

  8. #8
    Where exactly do they fill the pump? I know there is a catheter that comes out to fill it, but is it in the front or back?
    The catheter that goes from the pump (which includes the drug reservior) comes out of the side of the pump and tunnels under the skin to your back, and into the the CSF space. This is all internal. It is filled through a port in the top (outside) side of the pump, which is also completely covered with skin. It is the black dot in the middle of the pump in this picture. It does require that you get stuck with a special (Huber) needle to both empty and fill the pump through this port. Old drug should be removed before any new drug is added.



    How far will the catheter stick out? Does it need to be capped at all to prevent water from getting in?
    The catheter does not stick out at all. It is completely under your skin. It is rare to be able to feel the catheter, even on very skinny people without much fat. Because it is all under the skin there is no risk of contamination. You can swim with no problems, but scuba diving is not recommended as the change in pressures can cause your pump to run at a different rate.

    I know there's enough medication in it to last 3-6 months, but do I have to just wait for it to run out, or is it something that we can plan on in advance?
    It depends on both the concentration of the drug used as well as the rate and dose of the pump how often you need a refill. Refills are often done by a nurse in the doctor's office or sometimes can be done in your home. 6 months is currently the maximum time between refills due to drug expiration times. You should be scheduled for a refill prior to your anticipated "empty date" (usually a week or so ahead of time) and if your pump is getting very low you will hear it "beep" at you.

    (KLD)

  9. #9
    Senior Member
    Join Date
    Mar 2006
    Location
    connecticut
    Posts
    8,272
    I am going in tomorrrow for a trial myself. Thanks Tina for the info you posted.
    T7-8 since Feb 2005

Similar Threads

  1. Baclofen pump problems and questions
    By rob12d2 in forum Care
    Replies: 84
    Last Post: 10-27-2012, 07:58 PM
  2. Baclofen pump is obstacle for stemcells?
    By Shwetarose in forum Cure
    Replies: 18
    Last Post: 10-20-2006, 03:32 PM
  3. Replies: 0
    Last Post: 04-14-2003, 08:33 AM
  4. Replies: 15
    Last Post: 11-12-2002, 02:10 PM
  5. To Pump or Not to Pump
    By PN in forum Cure
    Replies: 8
    Last Post: 09-10-2001, 05:55 PM

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •