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Thread: Baclofen pump FAQ

  1. #201
    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.

  2. #202
    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


  3. #203
    Senior Member
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    Quote 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

  4. #204
    Senior Member
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    Mar 2006
    Location
    connecticut
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    Quote 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

  5. #205
    Quote 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:

    http://sci.rutgers.edu/forum/showpos...&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


  6. #206
    Senior Member Them Bones's Avatar
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    Mar 2006
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    Tyngsborough, MA
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    1,042
    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.

  7. #207
    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

  8. #208
    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.

  9. #209

    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; 07-25-2009 at 08:19 AM.

  10. #210

    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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