Announcement

Collapse
No announcement yet.

Baclofen pump FAQ

Collapse
This is a sticky topic.
X
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

    @hv, it's worth having a conversation with your doctor about switching over to the pump. My understanding is that the maximum daily dose of oral baclofen is 80mg, so s/he may want you to see if increasing your dose by 20mg a day, with the extra 20 taken in the afternoon when the spasticity [stiffness] is the worst, before considering the pump.
    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


      Many people take more than the recommended maximum dose of oral baclofen of 80 mg. daily. Keep in mind that meds for spasticity help much more with TONE (spasticity) than they do with SPASMS (involuntary movement).

      I doubt you would qualify for a baclofen pump if you have not been on record as maxing out on not only baclofen, but the other available drugs for spasticity management, including tizandine (Zanaflex) and possibly Dantrium (dantrolene sodium) as well.

      (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


        I cannot take oral baclofen in doses higher than 20mg at a time without being extremely tired and lethargic. I got the pump in April 2010 after a severe relapse that left me with major spasticity and unable to walk. The pump was a good solution for me because I have a low tolerance for pain meds. It has made a wonderful difference for me.
        I have had no problems with the medication in the pump. I am at a very low dosage and have had to have my doctor make 3 adjustments to the amount of baclofen released due to increased spasticity. I have had the pump refilled 2 times. Refill process is extremely easy. Done in the doctor’s office and the appointment takes all of 15 mins.

        Comment


          baclofen pump

          I had the baclofen pump implanted last year and the catheter broke by the end of the year. Just had surgery again last week to fix it after months of telling the doctors something was wrong. I don't do any crazy exercises and am ambulatory with a cane due to spasticity. They say I can resume my normal activities but now I'm terrified this will break again. I just wondered if anyone has had similar problems. I really don't want to keep repeating this surgery and I am excited to actually get results. I am now just terrified of moving a certain way and breaking the catheter again.

          Comment


            My son had a baclofen pump for ten years and never a problem with the catheter. But he had a problem we believe was caused by the pump....but we believe it was from a bad battery. Medtroncs has a recall on the pumps for this issue, but we didn't know that. Either did our doctor. We didn't know the signs of baclofen withdrawal and he was helluncinating, so he couldn't tell the doctors in the emergency roonm what was going on. I would suggest that someone close knows about the signs of Baclofen withdrawal and what should be done if something goes wrong.

            Comment


              Originally posted by stephc10 View Post
              I had the baclofen pump implanted last year and the catheter broke by the end of the year. Just had surgery again last week to fix it after months of telling the doctors something was wrong. I don't do any crazy exercises and am ambulatory with a cane due to spasticity. They say I can resume my normal activities but now I'm terrified this will break again. I just wondered if anyone has had similar problems. I really don't want to keep repeating this surgery and I am excited to actually get results. I am now just terrified of moving a certain way and breaking the catheter again.
              Steph,
              I had the same problem. My first surgery for implantation of the baclofen pump was Dec. 21 20111. For a short time, I could see a light at the end of the tunnel: tone decreasing, spasticity pain decreasing, just about ready to ditch my walker. Unfortunately, all of my improvements went away, and, after about a month of trying to convince my pump team that something was wrong, it was discovered that the tubing wasn't patent.
              I just had a complete revision of the pump, tubing, etc. They also moved the pump a bit more towards my belly button, as the pump had been hitting my hip bone.
              The surgeon told me that she had no idea why the tubing wasn't delivering the medication to my spine, as there was no leakage or holes, and no clots or occlusions.
              So, like you, I am scared to death of this happening again.
              I have MS, with all of my lesions in my c-spine. Still, I had been very active,and worked out quite a bit.
              The spasticity management nurse says I will have no physical restrictions once the pump is scarred in, but I will always wonder if I did something wrong the first time around.
              My physical therapist, knowing how hard I work out, will not let me get back to full exercising for 6-8 weeks post surgery, but the pump team thinks I could start 2 weeks after the surgery. (I can barely move my legs, as the pump needs adjusting upward!)
              I wish I had answers for you, but all I can do is completely relate to what you are going through.

              Comment


                Baclofen pump experience

                I don't have a spinal cord injury but I suffered a brain stem stroke in August 2010. This forum has answered a lot of my questions regarding the pump. I had the pump since November 2011. I haven't gotten much relief from it, and I'm up to 615 mcg. I had a dye study done last month, but everything was ok.

                I would like to get other peoples experience with it. Do you get progressively looser or does it happen all at once? I'm just getting nervous about it.

                Thanks

                Comment


                  When my son first went on the pump, the relief was immediate. Although he lost some strength, his spasticity was reduced along with the pain in his calves. The dosage had to be periodically increased over time. Everyone is different, and he developed psych problems after he went on the pump. His psychatrist said it was related to the interaction of baclofen with other meds.

                  Comment


                    Dot,
                    I am definitely "looser", but still hypertonic. My second pump was placed one month ago. The pump team that I have been seeing weekly, are fearful of getting me weak, but I am far from weak, and just wish they'd crank that pump dosage up to the point of weakness, and then back off. Prior to the pump, I used a walker for longer distances, but now I am so tight that I use the walker even in the house now.
                    I must say that my spastic paraspinals and hip flexors have relaxed enough that I am no longer in constant pain....a huge plus.
                    I have multiple sclerosis, so I am on a much lower dosage than you (120mcg right now, actually,kind of high for someone with MS.)
                    So, with my experience, I am very slowly getting looser.
                    Best of luck.

                    Comment


                      Today is the 1 year anniversity of my sons "event"...we think the baclofen pump malfunctioned sending him into a coma which last for months. Today, he is still in rehab from the event. During the last year, he was weaned off baclofen...down from 350 to zero in January. The withdrawal was HORRIFIC. So I would make certain you have someone always around if you decide to get off the stuff. Good news is that he is doing considerablly better than when he was on baclofen. He lost weight and is stronger so he can exercise and stretch to combat the spasicity. The nightmare of the last year may turn into a beautiful dream if he continues improving and gets back to where he was before he "discovered" baclofen.

                      Comment


                        Myths/Facts
                        1. MYTH: A test dose of baclofen into the spinal fluid is a good test of how a person’s spasticity would be changed if a baclofen pump were inserted .

                          FACT: The test dose is given to answer one question: does it relieve spasticity. The test dose often produces more relaxation than would be desired day after day.
                        2. MYTH: A baclofen pump improves spasticity in the legs but not in the arms.

                          FACT: The amount of spasticity reduction in the arms depends on where the catheter is positioned in the spinal fluid. When baclofen was first given, catheters were placed low (T10-12) and improved mainly the legs; now, catheters are positioned higher (e.g., T 1-2) and arm spasticity is improved much more .


                        Follow-up
                        The pump needs to be refilled every two to six
                        months, depending on the pump size, concentration and dose. Refills are done in the office (or occasionally by visiting crna nurses) using a syringe and needle and take approximately fifteen minutes to complete. At that time, baclofen doses are adjusted depending on the effects that are being seen. Doses typically increase slowly during the first year, then remain at that level for years thereafter. The battery in the pump lasts seven to eight years at which time the pump needs to be replaced. Baclofen has been used for more than fifteen years with no long-term complications being reported.
                        Futher Reading: http://www.neurosurgery.pitt.edu/ped...pasticity.html

                        Comment


                          Not true- the test dose is a test dose ( but it is a bolus- injection of 50 mcg to 100 mcg so you can see the effect fast. Once the pump is implanted it is a basal rate or hourly to begin with and the pump is titrated slowly upwards 10-30% at a time. You do NOT want to overdose the person- it is not just your legs- the medicine circulates to the brain and usually doesn't affect much above the lower extremities but if it was an overdose then you could have serious side effects. The titration can be done every other day at the earliest to see the effect of the dose.Then once the desired effect is there you stop and/or you can tweak periodically. There is also a Flex confusion that you can individualize it ex: increase during night or whatever hours are needed or give a bolus- amount at certain times to help when needed and then have the basal or hourly rate also.
                          Every person is different and pump settings are different and you have to deal with people who know what they are doing or you will get overdosed and go into a coma or the catheter won't be put in correctly or will break loose or leak. If there was a pump malfunction- there is a history or LOG that can be read. An investigation is done by theprovider and also Medtronic or pump company. If this wasn't done then it was the providers fault. You should ask for a read out of your settings and also a log if there were every any complications. Compare the settings and dosage and see what happened. The company will take the pump and test it also!
                          Not to say the pump can't malfunction but.... operator or implantation error or post op issues- i.e. moving. bending, lifting etc.. when you should NOT bend forward, liftor twist sideways for 6-8 weeks- if you do the possibility of the catheter disloging etc is there. Then you wil get a free flow of medicine. of course this won't show up on the pump log. Most just implant send home and don't give specific enough instructions.

                          CWO
                          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


                            What is the latest on Medicare coverage? My wife finally got the referrals to see a surgeon and we had the visit, but all we heard was a vague $8K copay with no details in a phone message. Nothing about continuing copays for refills. We don't even know if it will work. I'd consider the trial just to know if it's even worth considering. We wasted a $600 copay on botox to find out that was worthless. I tried calling back to get a detailed statement but all I got was runaround. I don't really think they want to do it. I'd look for another surgeon but I don't want to waste time if they are going to tell us the same.

                            Comment


                              My son had problems with Baclofen. We still don't know the long-term impact. Many physicial therapists we talked with say there are many others who have had problems with the drug.

                              Comment


                                It is an approved procedure and your INSURANCE COMPANY OR MEDICARE WILL PAY. Again depends on your cpverage. Who is your insurance case manager? You may need to have letters or justification written.You can contct medtronic and they can give you providers in your area that perform the trials/implant and manage itb pumps.And know about the funding issues and rules. www.medtronic.com
                                CWO
                                CWO
                                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

                                Working...
                                X