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Thread: information needed regarding - Study of an Implantable Functional Neuromuscular Stimulation System for Patients with Spinal Cord Injuries

  1. #1

    Cool information needed regarding - Study of an Implantable Functional Neuromuscular Stimulation System for Patients with Spinal Cord Injuries

    ,

    I received some information reference an ongoing study involving implantable Functional Neuromuscular Stimulation System for Patients with Spinal Cord Injuries (http://clinicaltrials.gov/ct/show/NCT00004445?order=3).


    I conducted a search on CareCure but was only able to find limited information from 2001. I was wondering if anyone could provide further infor mation, especially interested in first hand experience.


    1) Has anyone had this procedure?
    2) Can you provide any information ref same?
    3) I was told that I could undergo this procedure with no risk to future SCI procedures that might come down the pike. True?
    4) Is this a good procedure to use to help maintain what I have until there
    is a cure?
    5) Any information would be appreciated - both positive & negative


    Thxs,
    Last edited by shoc13; 09-03-2005 at 12:53 AM. Reason: update
    Shawn (www.shawnoconnell.com)

    Remember - Dare to Dream

  2. #2

    Dr Wise Young

    Dr Wise Young,

    Do you have any information reference an ongoing study involving implantable Functional Neuromuscular Stimulation System for Patients with Spinal Cord Injuries

    Thanks,
    Shawn (www.shawnoconnell.com)

    Remember - Dare to Dream

  3. #3

    latest news

    Well,

    After extensive research, I decided to get the FES implantable device installed

    I'll be going to Cleveland on March 19 - 20, 2006 for some equipment in preparation for the surgery sometime in late April. I realize that this isn't the cure but believe that it will be another tool in the toolbox that will help keep me in shape for the potential cure.

    Here's my current plan in my quest to walk again: (wish me luck)

    Now:
    1) Use FES stim-master bike
    2) Use standing frame
    3) Use drug 4-AP (more info http://www.shawnoconnell.com/4-AP-Master.html )
    - noticed improved feeling & a little more control in right hand (had about 50% prior to)

    Near future
    1) Will start protocol for anabolic steroid Oxandrolone, currently undergoing studies in the U.S.
    For clarification, I will not be participating in the actual study due to the fact it's a double blind study & it's occurring in Florida. After talking with the people behind the study, I'm having my doctor prescribe the drug after a round of extensive, precautionary tests (liver, etc).
    - more information at
    http://www.shawnoconnell.com/SteroidDrug-Master.html

    2) Will get the FES implantable device installed possibly by late April 2006.
    - more information at
    http://www.shawnoconnell.com/FES_Main_Page.html

    3) Will be going to Russia near the end of the year for treatment at the "NeuroVita" clinic in Moscow, Russia
    - more information at the following thread (CareCure) started by Oxygen
    http://carecure.org/forum/showthread.php?t=50674&page=4

    I'll post my progress for people that are interested. Let me know if you have any questions or suggestions. More info to follow
    Last edited by shoc13; 03-05-2006 at 08:42 AM.
    Shawn (www.shawnoconnell.com)

    Remember - Dare to Dream

  4. #4
    Shoc,

    I know a number of people who have had the procedure at Cleveland. They have the most experience. Much depends on what part of the body you are planning to stimulate. Some people get it for the hands and others get it for the legs. In my opinion, tetraplegic people who have gotten the stimulation system for their hands have shown improvement in quality of life. I don't think that there is evidence yet to show that people who get the stimulator for their legs are really getting more improvement in their quality of life, any more than people who have external functional electrical stimulators.

    Wise.

    Quote Originally Posted by shoc13
    ,

    I received some information reference an ongoing study involving implantable Functional Neuromuscular Stimulation System for Patients with Spinal Cord Injuries (http://clinicaltrials.gov/ct/show/NCT00004445?order=3).


    I conducted a search on CareCure but was only able to find limited information from 2001. I was wondering if anyone could provide further infor mation, especially interested in first hand experience.


    1) Has anyone had this procedure?
    2) Can you provide any information ref same?
    3) I was told that I could undergo this procedure with no risk to future SCI procedures that might come down the pike. True?
    4) Is this a good procedure to use to help maintain what I have until there
    is a cure?
    5) Any information would be appreciated - both positive & negative


    Thxs,

  5. #5

    Thumbs up

    Wishing you best of luck shoc13 ! Keep in touch, and take care of yourself to be in good shape because a lot will happen here in america in the coming year or two, they might be able to make us stand and take our first steps. Hope you'll send us pictures of yourself standing. xxoo manouli.

  6. #6
    shoc what levels and doses of Oxandrolone are they going to give you.
    please post when you are using it.

    i agree a double blind study is not what i would be interested in, i would want to see if it worked on me
    Last edited by metronycguy; 03-06-2006 at 07:01 PM.
    cauda equina

  7. #7
    Good luck Oxy,

    I hope the best for you.

    Deb
    "Save the last dance for me!"

  8. #8

    MRI's are on the web

    Thxs guys,

    I just got my MRI's (before & after) put on a cd so I can send them to the clinic in Russia. I placed copies on my website in case anyone wanted to take a look. Here's the link: http://www.shawnoconnell.com/MRI.html


    Mike (AKA Metronycguy),

    Once I start the study, I'll let you know what levels & doses of Oxandrolone I will be taking. I'm hoping to start in a couple of weeks. Will keep you posted.
    Last edited by shoc13; 03-07-2006 at 06:19 AM.
    Shawn (www.shawnoconnell.com)

    Remember - Dare to Dream

  9. #9
    Here is a link to another company looking at implantable FES. I have spoke with indviduals in the company and they informed me that they are actually conducting studies on cortical activation of the units.
    Wildwilly

  10. #10

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