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Fast-tracked 2017 e-stim?

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  • #31
    No trial, it's going in on Friday, he's confidant it will be for the better.

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    • #32
      Hope for the best man. Good luck to you.

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      • #33
        Now next Friday.

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        • #34
          Originally posted by alhavel View Post
          Now next Friday.
          Any news to report?

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          • #35
            I'm liking it, no sleep the night before, or diner, MRI at 10.30 that night, didn't get back up town till 12. A couple of doctors, Dr Brown as well, and technicians, nurses. They tested and moved the trial probes until they got what they wanted to move. Then I worked with the technician from St.Jude Medical, who make the unit, and got 2 programs to try out.

            When I asked him if Dr.Brown was the only one using this, they said, it's his methodology, no one else does it like him. I'm hitting the streets soon to torture test it, but already I can see a difference. My left leg actually is moving better and didn't mind me getting lost and snooping around UCSD.


            When my Uber driver showed up, my left leg actually bounced into the car, instead of dragging it in like a dead body! Stairs were better, although I was cautious on them. I'm not really as tired walking as I was, now it's a matter of doing some work with it, it's been 12 years, so I'm not exactly fresh out of the box!

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            • #36
              Thanks for all that. So glad to hear you're happy with it. Can you tell us more about how it works? Is there an external device that you use to control it, and how does that work? What does it feel like? etc. etc.
              Is there someone at the hospital who can be contacted for more details about the procedure? Would very much like to find out the cost.

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              • #37
                How are you doing with the stimulator? Can you give us an update?

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                • #38
                  Originally posted by mamadavid View Post
                  How are you doing with the stimulator? Can you give us an update?
                  alhavel, hows it? any updates you want to share?
                  "I'm manic as hell-
                  But I'm goin' strong-
                  Left my meds on the sink again-
                  My head will be racing by lunchtime"

                  <----Scott Weiland---->

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                  • #39
                    It almost seems surreal that this worked, at least some.
                    "Life is about how you
                    respond to not only the
                    challenges you're dealt but
                    the challenges you seek...If
                    you have no goals, no
                    mountains to climb, your
                    soul dies".~Liz Fordred

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                    • #40
                      Originally posted by ineedmyelin View Post
                      alhavel, hows it? any updates you want to share?
                      The OLD grouch was sidelined with a UTI. His last message on FB to me on Saturday was that the permanent stimulator was to be implanted as soon as the infection passed.

                      He posted in another thread here but I will send this to him.

                      I am anxious to see how it goes too.

                      I think they should allow anyone to get it if you are willing to accept the risks. Otherwise...we are in for many many years of trials. They do implant stimulators routinely for pain, bladder, heart, brain and anything other ailment they can sell one for so I am not sure they can keep using the excuse of safety to bar placement to Quads and Paras. What angers me is that most practices are willing to put one of these in whether the statistics support it or not. If you have huge amounts of scar tissue and are more 2 years into suffering chronic pain then the statistics are not in your favor for it to work. But that does not stop them from taking a "lets try it and see" approach.

                      YET if you have paralysis, lets do a trial and wait 10 years to make sure it is safe????? Does it make sense at all???

                      Al did say the stimulator greatly reduced his pain which is great and he was able to better control his steps. We joke about face plants and keep a score between us. Plus I am a flaccid injury where he is spastic. I think his spasticity/stiffness helps the stimulator do what it is supposed to whereas for me, I don't imagine it doing too much.

                      It seem in the CR trial that it is taking time to rebuild function rather than it being an immediate thing.

                      But I do wish every complete could have a trial then they could record the results no matter how small. Even if it helped minutely with bladder issues, I would consider it a gain in the treatment of SCI. Since Metronic is actively promoting the stimulator for overactive bladder, how can they keep denying SCI's. Its the same stimulator just different placement of the leads and possibly different leads?

                      In 1989, they said 10 years...well now at 27, I am cynical as hell that anything will ever get passed the trial stages because of the FDA rules/regulations.

                      The FDA is a MONEY MAKING MACHINE and not for the safety of the patient......
                      T12-L2; Burst fracture L1: Incomplete walking with AFO's and cane since 1989

                      My goal in life is to be as good of a person my dog already thinks I am. ~Author Unknown

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                      • #41
                        Originally posted by Curt Leatherbee View Post
                        It almost seems surreal that this worked, at least some.
                        Are you spastic at all Curt? I bet it has a significant bearing on the results. I would guess that with spasms, the nerves are firing and the stimulator may just organize the signals???
                        T12-L2; Burst fracture L1: Incomplete walking with AFO's and cane since 1989

                        My goal in life is to be as good of a person my dog already thinks I am. ~Author Unknown

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                        • #42
                          He did reply last in another thread on February 14th.

                          http:///forum/showthread.php?252835-...=1#post1791562

                          Hi, I've had the epidural trial implant, it worked for me very well. After having to trade it back in I was a mess, after 12 years and a so called walk, I was only good for 200 feet at best. With the trial I went all out and walked a mile and a half all uphill the first day, I finally got my freedom back. I walked a mile in the morning and another in the afternoon, occasionally running aground in a Jack in the Box or taco stand for something to drink! 12 years broken, and 56 years old it was quite the thing, but coming home I thought I could still maneuver my now limber legs, I crashed on the granite counter top twice and hit the ceramic tile floor a few more times.

                          From Christmas through after New Years I went through a gallon and a half of Clorox2 cleaning up blood. And then there was the dental re-alignment.......

                          Now back on the west coast I am waiting for the UTI to clear up and go ahead with the permenent one. Knowing now that one of my falls may be the last, the whole time I had the trial I did more, stepped better, and was more confidant, all while never having a fall. Cept for the day I accidentally turned off the unit on my way to give it back, face first in the parking lot! Yes it did help a lot.
                          Roses are red. Tacos are enjoyable. Don't blame immigrants, because you're unemployable.

                          T-11 Flaccid Paraplegic due to TM July 1985 @ age 12

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                          • #43
                            Yes Daisy I am very spastic, have a lot of A/D and a reflex bladder that sometimes causes a/d when emptying. These are reasons I thought I might benefit from SCS implants. There is just not enough evidence that it really will do all that much for a complete injury like me other than the word of the 4 individuals and CR foundation. I really don't know if I believe it. I do believe it could really help incomplete injuries and thats probably why San Diego limited their trial to incomplete injuries. If I really knew for sure it would work as said by Louisville, CR foundation and the four implant patients I would probably fight really hard to get it done with whatever it took. I'm still in the waiting and watching phase. I remember years ago a guy named Will Amber filed a lawsuit against a researcher, it really did not get too far was my understanding. That is a very tricky kind of thing.
                            "Life is about how you
                            respond to not only the
                            challenges you're dealt but
                            the challenges you seek...If
                            you have no goals, no
                            mountains to climb, your
                            soul dies".~Liz Fordred

                            Comment


                            • #44
                              Ha, no spasms. Dead.
                              Roses are red. Tacos are enjoyable. Don't blame immigrants, because you're unemployable.

                              T-11 Flaccid Paraplegic due to TM July 1985 @ age 12

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                              • #45
                                Well, now back home, and it's going to snow, still having issues with the ankle, but I'm not letting it hold me back much. I've got a MUCH better gait, my left leg is behaving pretty good considering it's the one with the problem ankle. Starting to do a lot more walking, until the left ankle gets its way, and then I rest. Stairs are a breeze, I don't drag the left leg like I did.

                                I'll be heading back out the end of June to tune up the programs better, I've already made changes before I left and see if I can really work this out. So far, so good, I just wish this ankle/foot problem didn't show up, it came from an antibiotic Levaquin for my UTI. But it will pass, it's just going to take a few weeks. Until then.........

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