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Thread: Baclofen pump FAQ

  1. #261
    Senior Member TerokNor's Avatar
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    I got my baclofen pump placed in september 2010. It has helped my independence, comfort and life generally. It's also fun to freak people out with this huge hockey puck under my skin. In December I got fluid collecting around the catheter site at L1-2. The surgeon said it was fine (some scarring must have gotten loose to let some CSF out) unless it started to leak and that it would go away soon. The amount of fluid fluctuates during the day as well. I had a spinal headache but no leaking. The doc is puzzled because the fluid pocket is still there, but the pump is working and I haven't had any other problems. He has assured me that it's okay. Has anyone else experienced this?

  2. #262

    Question about removal of baclofen pump

    How I wish I'd found this forum a year or so ago!! My son Michael (now 30) was critically injured in a car crash almost 4 years ago(his friend fell asleep at the wheel). He sustained numerous broken bones on his right side, and 5 separate and distinct brain injuries. He was in a coma for a month, and we didn't know if he'd survive - and if he did, if he'd know us, or be able to speak, or see, etc, etc. Thankfully, after a number of medical facilities (and a horrific 18 month stint in a local nursing home) he's at home with us, and I'm his fulltime caregiver.

    Michael is on a long list of medications, for various issues - Pain, depression, neuropathy, high cholesterol, and he was on insulin and medformin for diabetes (which developed about a year ago). The diabetes is now under control, so he's off those meds.

    He had the baclofen pump put in a year ago, at the suggestion of his pain management doctor. How I wish I'd gotten the information on this site before making that decision!! His trial went well, so the pump was put in. He has increases in the amount dispensed every month, but to be honest, I really don't see any improvement in either his pain level or his spasticity. His legs are both bent at the knee (permanent sitting position) although he is able to straighten his left leg somewhat. His right leg, though, that sustained the major injuries in the crash, causes him a LOT of pain, and the knee is very misshapen and painful. He has a titanium rod from his knee to his hip. When we mentioned the misshapen knee to the pain management dr, he suggested we see an orthopedic surgeon in town - who recommended amputation at the knee (an option Michael himself had requested about 2 years ago, and he was told that wasn't an option). Michael and I came home and researched amputation, the pros and cons, and spoke to a friend of his who had his arm amputated in Iraq, and who now deals with soldiers who come home with missing body parts. He said that voluntary amputation rarely, if ever, causes phantom pain... So we told the ortho dr that's what we decided to do, and he referred us to a dr that works from a hospital we'd prefer going to (our local hospital is atrocious!!).

    The more time that goes on, with there seeming to be no improvement and increasing pain, the more I'm questioning the baclofen pump. Michael has lately been saying his right side hurts (where the pump is located) and he has pain in his lower back (where the tube is directed). Going for the amputation would mean the pain he experiences every day would be gone (hopefully meaning he could decrease or discontinue his percocet), and he probably wouldn't need the baclofen pump.

    Is the surgery to have it removed the same as having it installed?? I'm thinking it would be better to remove it before the amputation surgery - any opinions on that?

    Sorry this is so long - I'm just so thrilled to have a place to get information from!!

  3. #263
    Yes the surgery is basically the same to remove.What dose is he on? Does he have a rehab doctor giving input? The dose can be increased by 5-20% every other day, or atleast every week. And physical therapy during this. Once a month sounds very slow. Until the correct dose is achieved or the max dose. If the medication doesn't seem to help the spasticity at all then studies need to be done to make sure everythign is ok. Spasticity can be one cause of pain but there may be others.
    Is there a rehab doctor who specializes or is very knowledgeabe in spasticity in your area?I highly recommend you consult one.
    Our anesthesiologists puts the pump in but doesn't manage the dose. I strongy recommend you consult a specialist for this and the pain issue. You need a physiatrist or rehab doctor.
    CWO

  4. #264

    New Member

    Very interested in the Bac-Pump and spasms...Could someone send me a message telling me how to post a new discussion! I dont know why I can not figure this out?

  5. #265
    Senior Member rdf's Avatar
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    Go back to the main CARE forum page, the one that lists all the different discussions. Look to the top and left of the list of discussions. There's a button there called

    Click it and go. Good luck.
    Quote Originally Posted by brentcarpenter82 View Post
    Very interested in the Bac-Pump and spasms...Could someone send me a message telling me how to post a new discussion! I dont know why I can not figure this out?
    Please donate a dollar a day at http://justadollarplease.org.
    Copy and paste this message to the bottom of your signature.

    Thanks!

  6. #266

    baclofen pump

    Quote Originally Posted by rybread View Post
    Baclofen pump facts
    The baclofen pump is used to provide medication directly to the spinal cord, typically baclofen, when the oral dose exceeds the recommended maximum dosage. It is produced by Medtronic and is about the size of a hockey puck. A catheter runs from the pump along the abdominal wall where it is anchored to the spine and punctures the spinal cord. It is possible for the catheter to be placed above the point of injury. I have mine placed at C-4. It can provide medication both continuously or in bolus amounts (large amount at a time) and is typically delivered in micrograms. The pump itself is located just below the skin somewhere in the abominable section. Mine is located on my right side. The battery lasts anywhere from five to seven years at such a point when they need to replace it, but not the catheter. To fill the pump, a needle gets stuck through the skin and a port in the middle of the pump. To reprogram it, a scanner is placed directly over the pump to scan the pump and get the settings at which point they can change them and program the new settings into the pump. MRI's are not a problem with it as it automatically shuts down as soon as it senses the magnetic field. If anyone has any information to add to this, go for it.
    As far as medications that can go in it, baclofen and clonidine are a typical mix to help with spasms and some pain. You can add Dilaudid or a number of other liquid medications although I found they aren't very effective for central pain, at least not long-term. And for me, a lowered my testosterone level and I put on a ton of weight.
    I have a lot of experience with this thing so if you have any questions that aren't answered here by me or others or doing a search, feel free to ask.

    Will someone please make this a sticky post. There are a lot of questions about it and I think it would be good to have them all answered in one place.
    thanks for posting. I am thinking of having a pump installed. Did it help with walking and bending at the joints. man my right leg and trunk is so stiff - crazy. Did the pump make you gain weight?? I take 80 mg orally and see some weigght gain and pot belly as well. Let me know how it's going. I am one year post from tumor surgery in spinal cord t3-t5

  7. #267
    I had my baclofen removed a year ago forgetting why I got it to begin with. Horrible mistake removing it. Now after a year I was to reinsert it again. will there be any complications. I feel useless my spasms are so bad I cant even cath my self anymore.
    Quote Originally Posted by rybread View Post
    Baclofen pump facts
    The baclofen pump is used to provide medication directly to the spinal cord, typically baclofen, when the oral dose exceeds the recommended maximum dosage. It is produced by Medtronic and is about the size of a hockey puck. A catheter runs from the pump along the abdominal wall where it is anchored to the spine and punctures the spinal cord. It is possible for the catheter to be placed above the point of injury. I have mine placed at C-4. It can provide medication both continuously or in bolus amounts (large amount at a time) and is typically delivered in micrograms. The pump itself is located just below the skin somewhere in the abominable section. Mine is located on my right side. The battery lasts anywhere from five to seven years at such a point when they need to replace it, but not the catheter. To fill the pump, a needle gets stuck through the skin and a port in the middle of the pump. To reprogram it, a scanner is placed directly over the pump to scan the pump and get the settings at which point they can change them and program the new settings into the pump. MRI's are not a problem with it as it automatically shuts down as soon as it senses the magnetic field. If anyone has any information to add to this, go for it.
    As far as medications that can go in it, baclofen and clonidine are a typical mix to help with spasms and some pain. You can add Dilaudid or a number of other liquid medications although I found they aren't very effective for central pain, at least not long-term. And for me, a lowered my testosterone level and I put on a ton of weight.
    I have a lot of experience with this thing so if you have any questions that aren't answered here by me or others or doing a search, feel free to ask.

    Will someone please make this a sticky post. There are a lot of questions about it and I think it would be good to have them all answered in one place.

  8. #268

    Pump removal

    My son is having his pump removed in a couple weeks. He had all kinds of problems since he has been on the thing including a few trips to the psych ward. Why did you have your pump removed a year ago

  9. #269
    This is truly an incredible device. It amazes me that today we have technology that we can implant in our bodies that can just stay in there all the time, without causing a bunch of problems.
    Makes me think, if a cyborg is a human-robot mix, then does that make somebody who has an artificial electronic/mechanical device such as a Baclofen pump a cyborg?
    I knew this day would come.

  10. #270
    I take 60 mg baclofen a day. Is that a lot? I have spasms for sure but i get real stiff in the afternoons when I am working? dont have them at night that I know of as I never wake up from my legs going crazy that I know of. Wondering if a pump would help?

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