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When will Epidural Stimulation ever be brought to the masses?

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  • #31
    Darn, well I guess they are up against a liability and all, that sort 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


    • #32
      See the thing about spinal cord injury is there's not as much Financial incentive to keep us The way we are, compared to something like cancer etc. in fact we almost have damaging financial implications remaining in the chair statistically speaking! To the economy ( most of us are unemployed, single, sick, depressed, broke etc) which is the government , Which in turn like an ecosystem would affect pharmaceutical sales, One way or another the government has huge " involvement " with pharmaceuticals. All in all we have a much better shot than cancer, conspiracy theory wise anyway..

      Comment


      • #33
        Can't compare cancer to paralysis .. at least they have treatments. Treatments that have dramatically improved survival rates.

        Survival is the percentage of people who are alive at some point in time after their cancer diagnosis. There are many different ways of measuring and reporting cancer survival statistics. Most survival statistics are reported for a specific time period, namely 5 years.

        Based on 2006–2008 estimates, 63% of Canadians diagnosed with cancer are expected to survive for 5 years or more after a cancer diagnosis
        Survival rates vary from low to high depending on the type of cancer. For example, based on 2006–2008 estimates:
        The 5-year relative survival rate for lung cancer is low (17%).
        The 5-year relative survival rate for colorectal cancer is average (64%).
        The 5-year relative survival rate is high for prostate cancer (96%) and breast cancer (88%).
        Between 1992–1994 and 2006–2008, survival rates increased from 56% to 63% for all cancers combined.


        http://www.cancer.ca/en/cancer-infor...nce/?region=on
        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

        Comment


        • #34
          You cannot compare spinal cord injury to cancer. There is financial incentive to keep sick people sick...the more visits a patient generates the more profit to be realized. There is no profit in a cure for any disease or illness. Think about it. I used to think it was decreased participation and lobbying on our part.

          Spinal Cord Stimulators are a 3 billion dollar a year business for interventional pain management. They are also using them in many other kinds of treatments.

          They are VERY safe as they have been used for pain since 1987 or so I was told when the two clinics I went to tried to sell me one. They have been using them for intractable pain since 1967. At that time, they only let certain patients have them who met certain criteria. It was highly controlled because of the risks.

          However, today those risks are minimal and that is what they tell prospective patients.

          Rob Summers had 17 leads implanted with his stimulator and his procedure was no different than anyone elses that has gotten one of these devices. They implant 4-16 leads normally for back pain. Then the physician takes a "wait and see if it works" attitude or that is what I was told when I asked about the statistics leading to my not being a good candidate for the treatment.

          So I guess my question would be since this is such a routine procedure now for every one else, why are they so much more worried about the side effects in a spinal cord injured person and insist on research being done? Why not do the implants in everyone who wants one and gather the statistics as to whether patients got any increased function or strength?

          Oh I guess if they did that, then they couldn't continue fundraising and dragging out the "research" for the next 10 years.

          Research is a bit different when the thing being researched is something that has not been studied or done before but the SCS is already being used and heavily marketed.

          These guys may not be getting a complete cure but read up on the functional gains they have experienced. I believe there is not one person here who would not have a stimulator implanted if it provided the increased quality of life it has provided Rob Summers.

          Since the FDA approved it for back pain, why not spinal cord injury? How much more damage can they do to us? I have heard of many stimulator implants causing spinal cord injury/paralysis/loss of bowel and bladder in back pain patients though.

          So why not do the implants in SCI's at the rate they are doing them in everyone else. If you get functional return or better quality of life then call it a success. It seems that the nerve stimulation is rebuilding pathways so this process could take years before they see a full cure.

          Since it is already approved by the FDA for use in the spinal cord, why not just lobby for approving it for paralysis and pain together.

          If I thought it would give me better bladder function, I wouldn't hesitate at all. However, there is quite a bit of risk for me as my cord is tethered and it could increase my paralysis.

          I think the Christopher Reeve Foundation has lost its original focus and has become a business focused on profit like all the other not for profit fakes. Having watched it evolve from the beginning I think the whole organization has changed for the worst not for the better. Just my thoughts...
          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

          Comment


          • #35
            One other thought I had. Epidural Steroid Injections are not approved by the FDA but millions are performed every year. http://www.fda.gov/Drugs/DrugSafety/ucm394280.htm

            If the stimulator is approved to be used on the spinal cord, why would you need years of research for them to tell you that you can have one implanted for reversal of paralysis or increased quality of life??

            There must be a way....without years of fundraising and research trials.
            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

            Comment


            • #36
              The only thing is the 'electricity' part has to be dialed in and that takes some time and experimentation. If I remember correctly, it was different for each of them.
              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

              Comment


              • #37
                Thanks for your post Daisy. Was the tethered cord the main / only reason why you were not considered a suitable candidate for an epidural stimulator? Have you considered surgery to untether your cord? Can you tell us anything else about what would make a person a good / not good candidate for a stimulator implant?

                Comment


                • #38
                  Yes I will eventually have surgery to un-tether the cord. I have seen Dr Falci at Craig and he will do the surgery probably next year or this fall. I chose not to do the stimulator because the risks outweighed the benefits in my case. I have had a significant increase in pain over the last 10 years (caused by the tethering). The statistics support a stimulator to decrease pain in the first two years the pain starts. So since I have 27 years of scar tissue and adhesions, the statistics were not very good for reducing my pain. I have not lost any function yet so Dr Falci said that he would advise me not to try the surgery if "reducing the pain" was the only factor. Some get a good reduction and some don't. Scar tissue and adhesions can and often do return. So I decided to wait.

                  However, I did not know the stimulator could increase function and possibly help sexual/bowel/and bladder. I was only pursuing it as a treatment to reduce pain. I had read about the four guys BUT I did not know that it was the same procedure/stimulator that they are using for patients with back pain/failed back surgery.

                  If you are getting the stimulator for pain, the statistics show that patients who are less than 2 years from when the chronic pain started tend to get a really good reduction in pain. But you have to consider that there are lots of complications with the leads getting bound in scar tissue/becoming displaced and you have to decide for yourself whether the benefits are worth it.

                  I want to wait until Al has had his for a while then I may re-consider and persue one for the same reasons he did. If it could help me walk better or give me increased bladder function then it would be worth it.

                  I am wondering if the stimulator placed within a few months of acute injury could increase function quicker? It is my understanding these 4 men already had muscle atrophy when they got the stimulator and the impulses are working to build that muscle back up slowly? Anyone know more about that?

                  Curt, what is stopping you from going to UCLA and getting one implanted like Al Havel? Do they have to accept you into a trial for that to happen??? That is the only information that I did not research today.
                  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

                  Comment


                  • #39
                    Jen, I believe that is the case with every stimulator implant. They have to be programmed to the individual person.
                    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

                    Comment


                    • #40
                      Thanks for the great information Daisy, I was thinking about these very things for quite sometime now, first spinal cord stimulator (SCS) was done in the early 1970's. You said things better than me with my original post and agree with everything you said.

                      Originally posted by darkeyed_daisy View Post
                      You cannot compare spinal cord injury to cancer. There is financial incentive to keep sick people sick...the more visits a patient generates the more profit to be realized. There is no profit in a cure for any disease or illness. Think about it. I used to think it was decreased participation and lobbying on our part.

                      Spinal Cord Stimulators are a 3 billion dollar a year business for interventional pain management. They are also using them in many other kinds of treatments.

                      They are VERY safe as they have been used for pain since 1987 or so I was told when the two clinics I went to tried to sell me one. They have been using them for intractable pain since 1967. At that time, they only let certain patients have them who met certain criteria. It was highly controlled because of the risks.

                      However, today those risks are minimal and that is what they tell prospective patients.

                      Rob Summers had 17 leads implanted with his stimulator and his procedure was no different than anyone elses that has gotten one of these devices. They implant 4-16 leads normally for back pain. Then the physician takes a "wait and see if it works" attitude or that is what I was told when I asked about the statistics leading to my not being a good candidate for the treatment.

                      So I guess my question would be since this is such a routine procedure now for every one else, why are they so much more worried about the side effects in a spinal cord injured person and insist on research being done? Why not do the implants in everyone who wants one and gather the statistics as to whether patients got any increased function or strength?

                      Oh I guess if they did that, then they couldn't continue fundraising and dragging out the "research" for the next 10 years.

                      Research is a bit different when the thing being researched is something that has not been studied or done before but the SCS is already being used and heavily marketed.

                      These guys may not be getting a complete cure but read up on the functional gains they have experienced. I believe there is not one person here who would not have a stimulator implanted if it provided the increased quality of life it has provided Rob Summers.

                      Since the FDA approved it for back pain, why not spinal cord injury? How much more damage can they do to us? I have heard of many stimulator implants causing spinal cord injury/paralysis/loss of bowel and bladder in back pain patients though.

                      So why not do the implants in SCI's at the rate they are doing them in everyone else. If you get functional return or better quality of life then call it a success. It seems that the nerve stimulation is rebuilding pathways so this process could take years before they see a full cure.

                      Since it is already approved by the FDA for use in the spinal cord, why not just lobby for approving it for paralysis and pain together.

                      If I thought it would give me better bladder function, I wouldn't hesitate at all. However, there is quite a bit of risk for me as my cord is tethered and it could increase my paralysis.

                      I think the Christopher Reeve Foundation has lost its original focus and has become a business focused on profit like all the other not for profit fakes. Having watched it evolve from the beginning I think the whole organization has changed for the worst not for the better. Just my thoughts...
                      "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


                      • #41
                        Originally posted by darkeyed_daisy View Post
                        Jen, I believe that is the case with every stimulator implant. They have to be programmed to the individual person.

                        Yes, exactly, everyone is different. I standby that this should become mainstream sooner than later and something just is not right with the whole thing the way it drags on. Heck charge people 40 grand a pop to have it implanted, they could make their money this way rather than donations with no treatment. I'm sure the liability I spoke of at the top of the page could be covered under some sort of insurance policy or something.
                        "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


                        • #42
                          Agreed you can't compare cancer, but financially incentive speaking you can there treatments cost hundreds and thousands a year, where is most of us just feed off our insurance at a incomparable rate! Also statistically more cancer patients are employed (we all know the reasons way) and generally when they become unemployed there on deaths door. Let's not forget SCI strikes the (next generation) main workforce young men and women, more so men. Important needed Educations either being abandoned are going to waste. I don't necessarily agree there is financial incentive to keep the sick, sick. Depends on what kind of sickness and honestly the country we are talking about!

                          Comment


                          • #43
                            Also I just want to point out there seems to be a lot of focus on bladder function return ( for obvious reasons))! I just want to remind everyone if you have an indwelling catheter or, you must allow your bladder to stretch that means blocking your catheter. If you do not it will shrink harden than wither away permanently reside in a state where it cannot hold urine basically becomes dead/ useless/ ruined whatever ( like most of our body after paralysis) if you've had the indwelling for many years and haven't been doing that, ( I haven't been injured for four years yet, in the billing for about a year and it's still a back-and-forth battle with bladder shrinkage, I may have lost ��) I'm sorry but I wouldn't get your hopes up on the bladder return no matter what the treatment!!! Of course doctors won't warn you about this, you're not supposed to care, if you did find out about it you had to dig and find out yourself after being committed to recovery ...
                            Last edited by JamesMcM; 02-16-2016, 11:32 PM.

                            Comment


                            • #44
                              Seems that there is another gentleman named Andrew Bell that had this procedure done. Still no woman that we know of!

                              Excellent twitter feed on epi-stim: https://twitter.com/SCIbreakthrough

                              http://epiduralstimulationnow.com/the-stimulator/
                              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

                              Comment


                              • #45
                                Wow. They'll even throw in some stem cells with it in Bangkok, Thailand on that one. Interesting...
                                http://spinalcordresearchandadvocacy.wordpress.com/

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