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Question for ALL baclofen pump "owners"

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    Question for ALL baclofen pump "owners"

    I have been struggling with BAD spastisity for the past three months, my ankle and thighs go nuts - oral baclofen doesn't really seem to be working for me any more.
    I have noticed that when I take hydrocodone or diazapam my spasms/spastisity gets weaker for a couple of hours, but my freaking ankles are killing me. Not to mention at least 30 erections a day (to be honest I don't count but it drives me crazy) I can't go outside and talk to people because I will get a hard on every time I hit a bump on the sidewalk or touch my thighs.

    After getting my right ankle stretched for about 15 minutes it will calm down for about an hour and that's only one ankle that spasms really hard, my left ankle barely spasms.
    My feet jump off the footrest all the damn time I also have muscle tone all the time and my thighs as well as my ass feel like they are burning. I tried lyrica but it didn't help.

    I have been on 120 mg of baclofen, and I've made an appointment with my neurologist just to see if he can prescribe me something else.

    Did you guys try any other medications before getting the pump?
    Did you notice any difference after you got the pump, if so what kind?
    How long have you had it?
    How often do you have to get it refilled?
    How long did it take you to get used to it?
    How long does the surgery and recovery take, do you have to stay in the hospital?

    My friend has one that sticks out like a hockey puck inside your stomach, looks very weird..

    Thanks guys.
    C5/C6 Complete since 08/22/09

    #2
    Have you been tried on tizanidine or dantolene sodium?

    Lyrica does not really work well for spasticity in SCI, it is really a med for neuropathic pain.

    (KLD)
    The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

    Comment


      #3
      Check out my post "baclofen pump faq". There's all sorts of information about my pump and all the issues I've had. I'm on my fourth one in 14 years but I had a mishap with one of them
      C-5/6, 7-9-2000
      Scottsdale, AZ

      Make the best out of today because yesterday is gone and tomorrow may never come. Nobody knows that better than those of us that have almost died from spinal cord injury.

      Comment


        #4
        Originally posted by sci-nurse View Post
        have you been tried on tizanidine or dantolene sodium?

        Lyrica does not really work well for spasticity in sci, it is really a med for neuropathic pain.

        (kld)
        no i didn't i will put it on my list to ask the doctor
        C5/C6 Complete since 08/22/09

        Comment


          #5
          Originally posted by rybread View Post
          check out my post "baclofen pump faq". There's all sorts of information about my pump and all the issues i've had. I'm on my fourth one in 14 years but i had a mishap with one of them
          thanks i'll check it out
          C5/C6 Complete since 08/22/09

          Comment


            #6
            I'm in my 7th year with a pump. I just had the planned surgery to swap out the old one for a new one last month. That surgery was outpatient, and I took two days off from work. The staples are out, and I will start going back to the gym in a week or two. Other activities weren't really interrupted.

            The initial surgery is more involved because they have to place the catheter that delivers the baclofen to your spine. That surgery was inpatient, general anesthesia, slightly longer recovery. But not a big deal. You stay overnight in the hospital and take things easy for a couple weeks.

            The bottom line is that I had similar symptoms as you. I had to strap my legs down in two places to get anywhere without spazzing out of the chair. Plus I would get belly spasms that made me shake like a bowl of jelly. That tends to derail a conversation when it starts mid-sentence. The spasms would wake me up at night and interfere with transfers. There were times at home when I was barefoot where I would start kicking a wall so hard I thought I would break toes.
            This was all with a maximum dose of baclofen plus tyzanidine at night.

            I can't think of any negatives to the pump that even come to all that. My dose is literally 1000 times less than what it was. All the side effects of baclofen are gone. I get it refilled every six months.

            I definitely recommend it.

            Comment


              #7
              Originally posted by them bones View Post
              i'm in my 7th year with a pump. I just had the planned surgery to swap out the old one for a new one last month.

              do they have newer kinds of pumps these days or are they still using the old technology from six or eight years ago?

              the bottom line is that i had similar symptoms as you. I had to strap my legs down in two places to get anywhere without spazzing out of the chair. Plus i would get belly spasms that made me shake like a bowl of jelly. That tends to derail a conversation when it starts mid-sentence. T

              i have exactly the same symptoms, my belly starts to spasms right after my legs...

              this was all with a maximum dose of baclofen plus tyzanidine at night.

              what was your max dosage? Did tyzanidine help you at all after you started taking it with baclofen?
              thanks
              C5/C6 Complete since 08/22/09

              Comment


                #8
                The hardware looks the same from when I first saw it seven years ago. There may have been software updates. I have a medtronic. There may be other options out there, but this seems like mature, stable technology.

                I don't remember the dosage of tyzanidine, but it would put me to sleep. That was the goal, not reducing spasms so I could function. I don't mean that it helped me fall asleep like nyquil or melatonin. It knocked me the fuck out. Do not make the mistake of taking it if you are anywhere that you wouldn't want to be asleep in a half hour whether you wanted or not.

                edit: I should add that I have a bottle of baclofen pills as a backup. It gets refreshed every year when the pills expire. I've never had to use it. The symptoms that the doctor told me to look for in case the pump dies is "itchy, twitchy, and bitchy."
                Also, the pump has an audible alarm if it malfunctions or runs low. They played it for me so that I could hear what it sounds like. My belly was beeping.
                Last edited by Them Bones; 24 Aug 2016, 7:00 AM.

                Comment


                  #9
                  Originally posted by Them Bones View Post
                  The hardware looks the same from when I first saw it seven years ago. There may have been software updates. I have a medtronic. There may be other options out there, but this seems like mature, stable technology.

                  I don't remember the dosage of tyzanidine, but it would put me to sleep. That was the goal, not reducing spasms so I could function. I don't mean that it helped me fall asleep like nyquil or melatonin. It knocked me the fuck out. Do not make the mistake of taking it if you are anywhere that you wouldn't want to be asleep in a half hour whether you wanted or not.

                  edit: I should add that I have a bottle of baclofen pills as a backup. It gets refreshed every year when the pills expire. I've never had to use it. The symptoms that the doctor told me to look for in case the pump dies is "itchy, twitchy, and bitchy."
                  Also, the pump has an audible alarm if it malfunctions or runs low. They played it for me so that I could hear what it sounds like. My belly was beeping.
                  Thanks man, I heard that baclofen knocks people out as well. I'm going to see my spinal cord injury doctor on Tuesday, how long did it take you to set up an appointment for the pump will be placed?
                  C5/C6 Complete since 08/22/09

                  Comment


                    #10
                    Had one for 3 yrs now...best move I've made besides my ostomy. Removed a lot of stress and aggravation...huge.
                    C6/7 Complete

                    14 years post injury

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