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    Damn McD. I was hoping you'd come out of the hospital smilin. Hopefully as they ramp you up you'll begin to see relief. If it's worked for years for you, then it should still work fine. I've heard of taking a drug 'holiday' from IBT in some cases, but most doctors seem to think no tolerance is really built up using intrathecal baclofen. Maybe when you get your dosage upped a few times it will begin to work again. Sorry to hear this buddy. Let's hope things work out in a few weeks.
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    Comment


      Originally posted by cvdesty
      Hello, I am new in this forum and am curious of the baclofen pump. I have a friend who is in the hospital for about a year now due to car accident and was wondering if Baclofen pump is a solution for his situation too. He is paralyzed waist down and he complains of spasms. Is there a criteria on patient who are allowed to have this? There comes a point sometimes in his life that he gets discouraged in his situation and I would like to help him. Thanks.
      His doctor would be able to hook him up with a test dosage to see if it helps.

      Check out this site: Medtronics

      The pump has been a godsend to many who suffer severe spasticity and/or spasms.
      Please donate a dollar a day at http://justadollarplease.org.
      Copy and paste this message to the bottom of your signature.

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      Comment


        Rdf, thanks man. I had high hopes too. I'll have her bump me another good jump tomorrow and see how it goes. In hopes of a lower dosage, they also put in the lower concentration 500 instead of 2000 ugs, so I will burn thru this "load" of med real quick.

        Cvdet, the pump is usually a last resort for controlling our spasms/spasticity. His Doctor will have tried all other options before getting a pump.
        "a T10, who'd Rather be ridin'; than rollin'"

        Comment


          Originally posted by cvdesty
          Hello, I am new in this forum and am curious of the baclofen pump. I have a friend who is in the hospital for about a year now due to car accident and was wondering if Baclofen pump is a solution for his situation too. He is paralyzed waist down and he complains of spasms. Is there a criteria on patient who are allowed to have this? There comes a point sometimes in his life that he gets discouraged in his situation and I would like to help him. Thanks.
          Spasticity that does not interfere with safety or function should remain. It is actually good for him.

          What has he done for his spasticity up until now? Is he taking medications such as Baclofen or Zanaflex? Is he standing daily? Laying prone (on his stomach) at least an hour daily? Doing at least daily stretching/ROM exercises? A baclofen pump should be considered a last resort for spasticity management, not the first thing that is tried.

          (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


            Do you walk? I am a C7-T1 walking quad but I have alot of nerve pain from the lower back down. It never goes away and I have learned to deal with it somewhat. Im not a very happy person since the injury and maybe it's because Im in pain all the time; not real sure.

            Comment


              Well I'm sitting here in the hospital recovering from a catheter revision. According to the surgeon and Medtronic rep, my catheter was pressed against scar tissue such that was interfering with the dispirsion of baclofen. They pulled the old catheter right out and put a new one in, splicing it together at the base of my spine. The new catheter is actually placed higher in my spine, above the injuries at T7 and T10. I'm really hoping this fixes the problem! I'll let you guys know.

              Comment


                Hey Zero -- good to hear everything went well! I was wondering about you.

                Got my fingers crossed that this new cath & relocation does the trick, and you start noticing improvement right away.

                Did they adjust your dose at all, just in case the current level is a bit much once the baclofen starts circulating?

                Hope you have a great night tonight, free of pain and complications, and that by tomorrow morning you'll be well on your way to big relief.
                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


                  Originally posted by Leedogg View Post
                  YES!!!!!!!!!!!! I think I finally won the battle with the docs. I got an appointment with the surgeon in Charleston on the 15th. The rehab doc finally thinks I am having an inconstant flow of bacolfen. Now I just got to convince the surgeon that the cathedor and/or pump needs to be replaced. And I got to decide when I want to have the surgery. With the NASCAR race coming to Darlington on Mother's day weekend. I am NOT going to miss that. So I'll probably have it after that.
                  same here it work went it wants to finnaly after 3 yrs of test they will replace it it dos have a quink

                  has anyone od with pump i have 2 times very scary this weekend it went crazy i was a goosey lucy but it back to for me normal i to din/t realize i used tone to transfer
                  i gave up sat nit at midnite got home couldn/t transfer from drivers seat to chair after
                  30 min i just gave up called sherrif they came out. my bed has a rope i pull my self into

                  got to love it

                  Comment


                    Originally posted by Zero View Post
                    Well I'm sitting here in the hospital recovering from a catheter revision. According to the surgeon and Medtronic rep, my catheter was pressed against scar tissue such that was interfering with the dispirsion of baclofen. They pulled the old catheter right out and put a new one in, splicing it together at the base of my spine. The new catheter is actually placed higher in my spine, above the injuries at T7 and T10. I'm really hoping this fixes the problem! I'll let you guys know.

                    Just caught this Z. Hoping this does the trick!!
                    T7-8 since Feb 2005

                    Comment


                      Originally posted by vjls
                      has anyone od with pump i have 2 times very scary this weekend it went crazy i was a goosey lucy but it back to for me normal i to din/t realize i used tone to transfer
                      i gave up sat nit at midnite got home couldn/t transfer from drivers seat to chair after
                      30 min i just gave up called sherrif they came out. my bed has a rope i pull my self into
                      Yes, I overdosed once -- it is VERY scary. The brief story is on the previous page:

                      /forum/showpost.php?p=1051517&postcount=195
                      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


                        I am scheduling my evaluation.

                        Background: I'm T-4 complete, on 100 mg oral baclofen per day, and I have to strap my legs down otherwise I constantly have the bouncing knee spasms. If my feet slip off the footrest my legs stick straight out and flop and twitch. Bystanders think I am having a seizure. I also have the lower back spasm that prevents me from leaning forward when trying to push uphill. It also tends to pull me to the left and I am convinced it is causing me to develop scoliosis.

                        Anyway...

                        I read earlier that there aren't really any studies on the long-term effect of the pump. Is this true? Personally I don't have a lot of faith in ever being cured, but what if it does happen? Does intrathecal baclofen cause any additional damage that could interfere with a cure?

                        And I also have a lot of reflex erections. The last time I had sex (a while ago) I stayed hard almost to the point where I went in to the ER. Whenever I would start to get soft any movement I made triggered leg spasms which caused it to get hard again. I've actually been afraid to take any levitra since because of all of the reflex erections. I read one person claim the ED pills still work after the pump is in, anyone else agree?

                        And weight gain... Not from the medication directly, but is it possible that the leg spasms and increased muscle tone contribute to metabolism? At least noticeably? After a couple years of thin legs with light spasticity, I have had a year of severe spasticity which has caused me to have bigger quads and calves. It has also given me about an inch of butt muscle.

                        Sorry, I didn't plan on this post being so long.

                        Comment


                          Getting my dosage increased again today from 150ug to 180ug. I haven't noticed any difference yet but hopefully we'll find the right dosage. My neurologist wants to titrate with small increments before adding any pain medication.

                          Them Bones - I still have spontaneous and reflex erections after the pump. I asked Dr. Young if having the pump would interfere with clinical trials and he said the opposite. He said it would be easier for trials if everyone had a pump as it would be a delivery system for a treatment.
                          No human society, present or past, has lacked music. Music is therefore one of the very few human universals, which puts it on the same level as food and sex.
                          Fredric Lieberman

                          Comment


                            My 7 year old daughter got her baclofen pump in Nov 2008. Before she had gotten to the point her body was always tight and shaking. She was vomiting often and all that was accompanied with screaming and crying. I started looking into the pump because oral baclofen wasn't helping any more. I couldn't find a doctor willing to run the catheter as high as she needed it. It took months before I finally found someone. We drove over 700 miles to see him, he saw her in the office and did the surgery 2 weeks later. She didn't have a trial done, they just went straight to the pump. She is a new child. So happy and comfortable. The pump has literally saved and completely changed her life. I highly recommend it.
                            The only thing is, like I read above is the weight gain. You have to keep an eye on it. She was very thin, sitting at 36 lbs for almost 3 years. 8 months later she has gained 9 lbs. We are now having to think about cutting some calories (for the second time) and trying to up her activity. I guess it's a small price to pay for the comfort and happiness she can now experience.

                            Comment


                              Baclofen pump user in Japan

                              Hello, my name is Tetsuo and I am from Japan. I have been using the Baclofen pump for the past year. It is hard to get information about the pump here in Japan, and am hoping for some advice.
                              I am c4 complete and cannot use both my arms and legs. The Baclofen pump initially helped with the pain, but I have been experiencing pain again for about half a year. The last time I increased my dose (from 237mcg to 245mcg) the pain disappeared for about a week but returned.
                              To describe the pain, it "feels" in my head, like I am having spasms in my legs even though they are not actually having any spasms. It seems I am also feeling pain due to stiffness in my right arm.
                              If anyone has any similar experiences or advice, I would really appreciate a response -- either here or via e-mail/message.
                              Thank you!
                              Last edited by Tetsuo; 25 Jul 2009, 8:19 AM.

                              Comment


                                help

                                I know all the ins and outs of the pump ...have done extensive research and read all users pros and cons...my major concern is have a child that is not verbal/communicative. I won't know if something hurts, if its working, it something is wrong. I am looking for someone who has been through this situation to give me some insight.
                                Please help
                                Jenpiece

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