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Thread: Treatment and baclofan

  1. #1
    Senior Member lunasicc42's Avatar
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    Treatment and baclofan

    I have a question probably for dr. Young


    I have a baclofan pump for spasms and if I don't have it I kick like a damn mule and I heard that if you quickly stop it without ramping down it can cause major problems and some trials will exclude you now if you're on baclofan Assumingly because it purposely deadens nerves and all trials look to exciten nerves so baclofan would be counter-productive and I understand that. So how do I get off baclofan and I am Assuming that I might need to get off of it in the near future? And dr.young, do you take people with baclofan pumps in the chinascinet trials? If so, any distinction in recovery of those that have baclofan pumps and those that don't. I am Assuming that we are fairly close to a treatment for sci. In your opinion do I need to try to start getting off the baclofan or does it matter?

    Any other opinions welcome
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  2. #2
    Senior Member lunasicc42's Avatar
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    SCI-Nurse or does anyone have input?
    "That's not smog! It's SMUG!! " - randy marsh, southpark

    "what???? , you don't 'all' wear a poop sac?.... DAMNIT BONNIE, YOU LIED TO ME ABOUT THE POOP SAC!!!! "


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  3. #3
    Quote Originally Posted by lunasicc42 View Post
    I have a question probably for dr. Young


    I have a baclofan pump for spasms and if I don't have it I kick like a damn mule and I heard that if you quickly stop it without ramping down it can cause major problems and some trials will exclude you now if you're on baclofan Assumingly because it purposely deadens nerves and all trials look to exciten nerves so baclofan would be counter-productive and I understand that. So how do I get off baclofan and I am Assuming that I might need to get off of it in the near future? And dr.young, do you take people with baclofan pumps in the chinascinet trials? If so, any distinction in recovery of those that have baclofan pumps and those that don't. I am Assuming that we are fairly close to a treatment for sci. In your opinion do I need to try to start getting off the baclofan or does it matter?

    Any other opinions welcome
    Lunasicc42,

    We have no experience with transplanting cells into patients with baclofen pumps. At the present, we do not require that people get off their pumps before transplantation nor rule out people who have baclofen pumps, leaving this to the judgement of the doctors who are doing the trial. Before surgery, I think that it probably would be a good idea to reduce the baclofen dose to a minimum, since baclofen may interfere with the walking.

    Wise.

  4. #4
    It's very dangerous to "just get off" the baclofen pumps. I was warned about this last time I had surgery for a pressure sore. I had to have a pump immediately removed when my pump pocket got infected and it was hell. I spent A week going through withdrawals and couldn't get out of bed for a month. I had to stay in the hospital that whole time. I believe it would be up to the doctor on whether or not you can have the pump in or not. Just letting you know that my life would've been impossible without my baclofen pump. My spasms can be so bad that it straightens my back out and I slide down in my chair. Every little movement caused major spasms. Personally, I would try any cure until it's set in stone working. I would hate to through a clinical trial that would rip my chances of getting any kind of cure that may come up in the future
    Last edited by rybread; 04-18-2015 at 04:48 PM.
    C-5/6, 7-9-2000
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    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.

  5. #5
    C5-C6 for 30 years. I've tried everything in the book and baclofen gives me bad side effects..medical marijuana works perfectly and is safe. It saved my life and my caregiver who has to deal with the extreme spasms thinks it's a miracle plant. I live in Texas where it is illegal, but I do not care because it's the only thing that works and still allows me to live my life. I think the best advice for everyone needs to come from those who have been fighting for a better life for over 25 years.

  6. #6
    Quote Originally Posted by DazedMonkey View Post
    C5-C6 for 30 years. I've tried everything in the book and baclofen gives me bad side effects..medical marijuana works perfectly and is safe. It saved my life and my caregiver who has to deal with the extreme spasms thinks it's a miracle plant. I live in Texas where it is illegal, but I do not care because it's the only thing that works and still allows me to live my life. I think the best advice for everyone needs to come from those who have been fighting for a better life for over 25 years.
    I want to try this, but I don't want to be high all the time! Hate stoners! Which is where CDB comes in the medical component of marijuana but I can't find it in Canada. An observation I've made after a day or two of getting off the baclofen Entirely I can feel sensations I never have, I believe because they're always suppressEd. Now my spasms have gotten much stronger for when I did that. The clinical trial in Russia, the epidural simulator they don't allow Baclofen in the clinical trials and they shouldn't. Only way were going to recover is getting that shit out of our system, and using it too much undoubtedly has repercussions to a paralyzed body that is weathering away inside and out including the nervous system axons, spinal atrophy etc. There's no concrete evidence to say back whether Baclofen does or does not exasperate this and you will often get mixed answers. I have no doubt that it does make things worse, which is why I work so hard to grid my teeth and stay away from the drugs as much as possible, ( something I failEd at but managed to stay at lower doses compared to others ) which can be playing with fire and does affect my mood but it is a necessary evil. One day I will have to get off these drugs Completely hopefully , but for the unlucky few of us that are high quadriplegic and has actually severe spasticity that's something only the strongest most resourceful of us will be able to do ( mind you if you've been popping them back constantly since injury Damage is probably done it's no different than bladders shrinkage , contractors , drop foot, The ability for muscles to contract Etc if these things are not addressed they will fade away permanently or cause permanent damage). I've done lots of thinking on this subject it's more than just toughing it out the pain, if you have severe Full body spasms you will have to be braced in bed and in your chair So you actually stay in bed or in the chair bracing yourself Properly properly is a science in itself. Course when bracing yourself against strong spasms not to mention the fact that the spasms alone without being braced can do damage to the bone naturally have to be strengthened before lower your dose working your way off the drug! The process is a whole conversation. You'll need daily stretching, special equipment and for us higher injuries means you'll need someone to implement these things on a regular basis...Overall not an easy task by any means

  7. #7
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    Have you considered trying Sativex? It's prescribed to persons with Multiple Sclerosis to help them deal with spasms and pain. If you could speak with someone that runs a dispensary there, in Canada. They may be able to recommend a marijuana strain that helps control spasms.

    I may be wrong but I've read that using strains that have THC can be used without causing a high. It depends upon the way that you consume it.

  8. #8
    Senior Member zagam's Avatar
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    The THC is made when heated or smoked. if you extract from fresh plant with alcohol less THC. Was and still is medicine.

  9. #9
    Quote Originally Posted by Brent K View Post
    Have you considered trying Sativex? It's prescribed to persons with Multiple Sclerosis to help them deal with spasms and pain. If you could speak with someone that runs a dispensary there, in Canada. They may be able to recommend a marijuana strain that helps control spasms.

    I may be wrong but I've read that using strains that have THC can be used without causing a high. It depends upon the way that you consume it.
    Is that the pharmaceutical name for a marijuana pill?

  10. #10
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    No, it is a spray that is administered to the underside of your tongue or to the inside of a cheek. It was developed in the U.K. I'm pretty sure that it is available in Canada and I think that the FDA is going to decide whether or not it will be allowed in the U.S. sometime this year. I just thought that it might be worth trying.

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