Baclofen Pump

ZcollieZcollie Posts: 179Moderator Moderator
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Do any of you guys on here have a baclofen pump? I am a C-4 incomplete quadriplegic and have CRAZY body spasms all the time. I take 80mg of baclofen everyday orally and it hardly helps. I use THC and CBD to help calm my spasms but don't want to have to only rely on those. Some days are easier than others but makes it really difficult living in my own body. I have to sleep with tie downs over my legs every night because my legs constantly kick up throughout the night. I am a little nervous and hesitant about getting one. I can manage my spasms but I am going to be driving soon and worry about having a bad spasm while I am driving. I know my spasms have kept my body from atrophying and I use them to help me with certain things. I am scared that the pump will take everything away and I will be worse off. I need help getting convinced. What are the pros and cons? 
Accept what is, let go of what was, and have faith in what will be. -SONIA RICOTTI

Comments

  • jaarchjaarch Posts: 50Moderator Moderator
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    I have had a Baclofen pump for about three years now and it is AWESOME!! I have virtually no spasms and no drowsiness at all (Your mileage may vary, Lol!!). My current dose is up to 16.5 micrograms per hour which equates to needing to have my pump refilled every five months. It can be filled in about 30 min on an outpaitent appointment. There are a few things to be aware of as well. You can't use any type of tens, FES,  or H wave unit with the pump installed (the electrical signal from those can interfere with the pump). Every time you have an MRI, they need to interrogate the pump to make sure it is still working. The process of dialing in the correct dose is a bit time consuming as they wont increase or decrease the dose more than 10% per day. 
  • ZcollieZcollie Posts: 179Moderator Moderator
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    Okay, thank you for the info! @jaarch
    Accept what is, let go of what was, and have faith in what will be. -SONIA RICOTTI
  • Monica.TMonica.T Posts: 98Member ✭✭
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    My son's Ortho doc has mentioned getting the pump several times to us, but since complications during spinal surgery resulted in my son's SCI I am very hesitant about anything more being done to his spine. I fear any intrusion into his spinal column might make his condition worse.
  • jaarchjaarch Posts: 50Moderator Moderator
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    @Monica.T That is a very valid concern. My catheter is installed in my lumbar spine and goes up to T-12 which is well below my level of injury at T-3.
  • deborahvickdeborahvick Posts: 37Member
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    I have one. I have a combo of baclofen and pain medications.  I’ve had one for over 18 years now with Exception of about six months when one of them got infected and I was 24 weeks pregnant. They had to take it out and I had to wait time before they can get one for back in after the C-section but other than that I had Has been a huge benefit for me.

    That being said mine is I need to wear a back brace anyway but Prior to the brace I had to wear a corset But it’s just loose because of the fact that I have a connective tissue disorder.

    In fact I just recently had a port put in for my infusions and that’s all ready loose and it’s only been a few weeks. 
    Don't let today's struggles keep you from enjoying the days in yet to come!- Deborah Vick
  • ZcollieZcollie Posts: 179Moderator Moderator
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    @Monica.T Yes that is a big thing I am worried about. Going under for surgery and waking up worse off than I was before. I absolutely am with you on that. 
    Accept what is, let go of what was, and have faith in what will be. -SONIA RICOTTI
  • deborahvickdeborahvick Posts: 37Member
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    @Zcollie I can't promise it will be ok as I have had several pumps put in. One failed to work right away, my second and I went into severe baclofen withdrawal.. not a pretty site. I had several spinal headaches with various pumps.  I have also had one have a motor stall. 

    With all that said, the life that the pump has given me back is outstanding. It gave me a whole new lease on life and pain management that I could not otherwise get. I am in a unique situation with the levels of pain I have and the ongoing recurrent damage due to practically floating joints. (pretty much no connective tissue--- I had a port implanted for my infusions a few weeks back and its already extremely loose). 

    As many complications as I have had, it has made a tremendous difference. The baclofen and the pain medications. The short interval without the pump left me practically bedridden from the pain and muscular spasms. 

    We did prior to the pump, an external pump to test to see if it would be beneficial enough to go that route, though we already knew that my pain was very severe and the medications were not allowing me to have any standard of life. It's not to say that the pump takes care of all my pain but at least several major levels. My daily average, when active is usually around a 6/7 (especially with pressure change and such) it can go down as low as 3/4 but that's a rare moment. Activity will quickly increase it. It's not a cure all, just one other major power tool in my tool box for pain management. :-)

    Don't let today's struggles keep you from enjoying the days in yet to come!- Deborah Vick
  • 619Drake619Drake Posts: 19Member
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    @Zcollie
    I too had several mishaps with "the pump" back in the mid 1990s. Once the needle dislodged and I went into withdrawal like Deborah. Once the tubing from the pump in my abdomen to the needle site in my back got kinked and I again stopped getting the proper dose of Baclofen. Another time my doctor tried to give me a bolus (a one time larger dose of medicine) and he overdosed me into a three day coma. The pump computer showed he added a zero to the dose. I eventual had the pump removed and fortunately my spasms never returned to the problem level. I am sure in the last 20 years they have refined the pump process and it is much safer. I think trying an external pump test like Deborah is a great option. Good luck
  • ZcollieZcollie Posts: 179Moderator Moderator
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    @deborahvick @619Drake Okay, I am sorry to hear about all of the complications you both have had:/ But I am glad that it has helped your quality of life and functioning. Thank you for sharing your information and experiences. Very helpful. 
    Accept what is, let go of what was, and have faith in what will be. -SONIA RICOTTI
  • deborahvickdeborahvick Posts: 37Member
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    Totally. Feel free to contact me to talk more about it if you wish. Again, I would have time and again, had new pumps put in when the time called for it despite the challenges, withdrawal and infections (caused by an open wound on my very sensitive skin on top of the area where the pump was--- something I went to the Dr for asking for it to be managed before it became a problem only to be sent home and told it would heal and all would be fine and was in the ER two days later being told I needed to have my pump removed because it was likely infected by the open wound-) .

    In my opinion, if nothing else is working than you should do it. Though, I will also say since it is a big surgery, there are many things that can go wrong with a pump, etc that it should not be the initial things to try. You should have your tool box of techniques and methods for managing pain well established first. This will serve you well. Having a foundational method for pain management is important and the pump will likely become part of this. That being said, things can go wrong with a pump so it should not be the only methods used. Also, you will always want to have some oral baclofen in your medicine collection, if only to serve as a backup to prevent withdrawal should there be a pump stall. (This includes taking some with you when traveling, be it on vacation or away from home for the day.)

    Another thing that is good to have is a pump with a Bolus. A machine that can be used to increase your meds at time intervals established by your doctors. For example, mine allows me to increase my medication by 10% every 2 hrs up to 6 times in a 24hr period. (That rarely ever happens. Only if I am very active and/or there are pressure changes or major weather changes occuring nearby.)

    Don't let today's struggles keep you from enjoying the days in yet to come!- Deborah Vick
  • ZcollieZcollie Posts: 179Moderator Moderator
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    @deborahvick Okay, thank you so much for the information and insight! Very helpful! 
    Accept what is, let go of what was, and have faith in what will be. -SONIA RICOTTI
  • BrittanyFrankBrittanyFrank Posts: 39Moderator Moderator
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    The baclofen pump trial is very insightful as to if it is something that would be beneficial to you specifically. I had an extremely successful trial, but decided not to get it due to lack of body fat and have core function and ability I thought it would irritate me more then help. But the relief from spasm & clonus was very VERY successful. The pump is placed subcutaneously (under the skin) and you do have to go in fairly often to refill the pump.
  • ZcollieZcollie Posts: 179Moderator Moderator
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    edited May 3
    I will look into the trial! Thank you @BrittanyFrank
    Accept what is, let go of what was, and have faith in what will be. -SONIA RICOTTI
  • Mnichols23Mnichols23 Posts: 42Moderator Moderator
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     This is very interesting. I’ve never really looked into getting a baclofen pump. But the doctor has suggested I guess some sort of pain pump I guess and Neurontin pump to be specific. Has anyone ever used a pain pump before? If so, how was it?
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