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    Originally posted by bebe View Post
    The effects of long-term Baclofen use are not clear to me and I have not yet been given the chance to meet the doctor who will eventually implant the pump and oversee my treatment, to ask them.

    Anyone got any light to shed on this subject? E.g. what might long-term Baclofen use effects be and what do people do to minimise them?
    I don't know if intrathecal baclofen has been around long enough for any long-term studies of possible side-effects.
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    Comment


      Originally posted by Zero View Post
      Well I've had the pump for a couple months now. I've been getting increases a couple times a week. I'm now at 800mcg/day and I've still seen absolutely no response whatsoever. [I responded very well to a 75mcg test dose.]

      The doctor now wants to add a 50mcg bolus every four hours. Personally I think there is something wrong with the catheter placement. I've already had one refill and they verified that the baclofen is leaving the pump. The question is, where is it going?

      Do you guys think there is any danger in setting the pump so high? The catheter is inserted between my two injuries at T7 and T10, is it possible the baclofen is just pooling between the two injuries? Could this be harmful?
      thats the exact same issues I had, I couldn't tell a difference between 250 and 850 mcg. And the 50 mcg bolus shots didn't do anything.

      By the way I went to my surgeon in Charleston, and they are going to look at the images of both dye studies and the radiation studies. But from what I told the nurse procatishioner (cant spell) she thinks the cathedar needs replaced. She is going to call me sometime after thursday. To tell me what they decided.

      And thats what I thought all along.

      Comment


        Nurse practitioner

        Catheter

        (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


          Originally posted by SCI-Nurse View Post
          Nurse practitioner

          Catheter

          (KLD)
          ty I was close to it.......

          Comment


            I had a baclofen pump implanted in my body to help the spasms. It failed me also. This is a long story I will start at the 1st pump and where I still have a non working pump that no doctor will remove. The doctor will test it by forcing fluid through the catheter and watch it on a monitor and that was the only time I felt better and they tell me nothing is wrong. I couldn’t believe my ears. A better or more test are needed, not just that one test. The Doctor needs to listen to the patient. It didn’t fix anything I think the doctor may not get paid to replace the catheter. Think twice before you have a baclofen of pain pump implanted in your body. . Thank you for taking the time to read this part of my life so far. if my wounds get better i will finish this faster until then its on a snail task

            Comment


              Hello! I would like to start with me being a happy man, but that’s further from the truth. I was married for about 12 years when a man we know came in my shop own Oct 3 1997 around 5pm J.R. Lock & Key a store me and my father Bobby Ramsey ran. I been a professional locksmith since 1986, anyway the man was showing us a gun he had purchased earlier from an unknown person. It went off and the bullet struck me in back entering my spinal cord at t-9.

              I looked my father in the eyes and said to him I been shot. It felt like a belt tightening around my waist really tight. I though at first IM goanna die. It didn’t sink in with my family and friends at first then the gun went off again striking the showcase opposite of me. My ears were ringing from the bangs! Then my dad hollered out really loud what the hell is going on? I slowly started falling when my sister n law Missy came to check on me, she was sitting at the desk when it happened. Im holding the counter as I slowly fall to the floor, and then walked in my wife and three kids. The pain started from my waist and worked its way down my legs David Banks was calling 911 around that time.

              I remember Nick the man that shot me was still talking about football like it was business as useable. The ambulance came and I remember thinking to myself please don’t let me be paralyzed. IM at the hospital now laying on the table in pain and crying, im not the type of person that likes to cry. I kept asking the doctors please give me something for pain. It seemed like hours before I could even communicate with anyone then the doctor gave me the bad news your paralyzed. Long story short my wife left about a year after the accident and took the kids with her. To this day I don’t know why and really don't want to ask her. I was forced to file for divorce, it was the only way legal service would help me, so I could see my kids. They treated me so disrespectful; at one time they had me crying. I ended up loosing my left hip joint because it became infected and had to me cut out. It was just a week later when my right hip joint forced it way through the skin on the right side. I casually picked up the phone and called 911. I have been in and out of the hospital since the accident. About all I can do is lay and type. The pain and spasms stop me from being more productive. I’ve seen and tried different types of procedures since the accident. I will continue to update my project from time to time. ". Most people I don’t think could feel or imagine on your worst day the pain and suffering I endured and sometimes still do to this day. I couldn’t get a doctor to subscribe me something for pain. I and my family and friends had to find me medicine back then and I find it very hard to forgive them doctors for denying me this medicine. You know who you are and what was you thinking??
              I had a baclofen pump implanted in my body to help the spasms. It failed me also. This is a long story I will start at the 1st pump and where I still have a non working pump that no doctor will remove. The doctor will test it by forcing fluid through the catheter and watch it on a monitor and that was the only time I felt better in a long time and they tell me nothing is wrong. I couldn’t believe my ears. A better or more test are needed, not just that one test. The Doctor needs to listen to the patient. It didn’t fix anything I think the doctor may not get paid to replace the catheter? Think twice before you have a baclofen of pain pump implanted in your body. . Thank you for taking the time to read this part of my life so far. if my wounds get better I will finish this faster until then its on a snail task.





              Sincerely,

              Jeffrey Ramsey

              2730 Hargrove Road East
              Tuscaloosa, AL. 35405

              Last edited by SCI-Nurse; 11 May 2009, 7:05 PM. Reason: Removed personal plea for funds.

              Comment


                Hey, LeeDogg,

                The neurosurgeon and his NP at MUSC in Charleston are who we use for my son's pump care and refills. I think they're both great folks, and certainly know what they're doing. The neurosurgeon even made a house call !!! after my son's flap surgery when the dose needed to be ramped up to cover the post-surgical spasms (shoulda thought of that beforehand)!!
                _____________

                Comment


                  Placement of baclofen pump

                  Does anybody know----does the pump always necessarily have to be placed in the abdomen? Or can it be placed elsewhere, like the lower back/butt cheek?

                  Comment


                    No, it is always placed in the abdomen. Putting it in your back or butt would put it under excessive pressure resulting in erosion of the skin over the device.

                    (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


                      Just the thought of having that hard hockey puck placed in one of my butt cheeks, even with their ample padding, causes me to ~shudder~.

                      If I may ask, etseq, why the interest in placing it somewhere other than the abdomen?
                      It is easier to find men who will volunteer to die, than to find those who are willing to endure pain with patience.

                      ~Julius Caesar

                      Comment


                        Mainly because I have very little body fat in my abdomen, so it would look weird on me. Also, I already have a space in my butt cheek where I have an Interstim battery----I would be getting rid of this if I got a baclofen pump, though I think the Interstim battery is much smaller.

                        Comment


                          You are right. The Interstim is much smaller and weighs a lot less. You would be setting yourself up for a serious pressure ulcer, an infected pump and tubing, and very likely not be able to sit for weeks after the surgery if you were to have it there. I would seriously doubt you would find any reputable pump surgeon who would agree to do it there.

                          You don't need a lot of body fat to cover the pump in your abdomen, and except when you are naked, it really does not show, even in skinny people, esp. if you sit most of the time.

                          (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


                            Thanks. I believe you, I'm not going to look for someone to put it somewhere else. I was just wondering.

                            Comment


                              etseq I am very skinny too, and the only time people notice it is when I'm shirtless.

                              By the way, I went to see a different neurosurgeon (that my orthapedic doc suggested) yesterday. The guy in charleston never called me back or followed up with me. After talking to my rehab doc the new neurosurgeon said that he would revise the cathedar. But he's going to move the cathedar from around my shoulders back down to the middle of my spine.

                              But my question for SCI-Nurse or anybody that may know, with me having scoliosis and my spine being fused with harrington rods two years ago. The neurosurgeon wants to drill a hole in my fused spine to put the cathedar in. All the other neurosurgeons I talked to said that they cannot put a cathedar in a fused spine. They never once mentioned drilling a hole to do it.

                              So I guess I am asking is it ok to drill a hole in a fused spine?

                              This office (in Florence) and neurosurgeon seemed to be a lot nicer than the one in charleston. Even promising me a medtronic rep will be there when they do the surgery. Something the nuerosurgeon in MUSC never even mentioned to me.

                              Comment


                                Dr to do Intrathecal pump in Fairfield CT

                                Seems not many doctors do these?

                                Any recommendations?

                                Bill
                                Kindly,

                                The Ketamine Kitty

                                All the tears, all the pain, all the rage through the night (apolgies to the rewrite) RR

                                Next time I die make sure I'm gone,
                                don't leave 'em nothing to work on JT

                                And I ain't nothin but a dream JM

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