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    #31
    Walking Again,

    yes I can see that you are looking at cure. I think that most of us looked at the possibility when we were new SCI's.

    It's not that I think that it won't happen, because if research continues and the world is still in working order over the next ten years or so, it could happen.

    For me though the main issue that I face daily is pain. I have gotten used to wheeling and I can honestly say that living in a chair is a challenge, but with perseverance one can have a full life as an SCI.

    It is the pain that disables me.

    Do you visualize your self walking? Try it. This visualizing thing is a powerful tool.
    Gary Is = L-1 Para for 34 years.....................
    ~~~~~~~~~~

    Comment


      #32
      the body works hard to do what it's subsystems think are right

      Accordingly, i believe that at least in a relevant number of instances one's neural circuits will find a way to overcome the damage done by DREZ and eventually , if not sooner, you are back in some sort of pain mode as the nervous system attempts to cope with the result of the DREZ, possibly putting one in a worse place of pain!

      Comment


        #33
        Originally posted by walkingagain View Post
        Thank you Gary, I have to wonder if Neuro pain determines the amount of the spinal cord that in intact. Dr. Young has mentioned you only need 10% of the spinal cord to function as if nothing had ever happened. The logic would seem that the less neuro pain and spaciticty one has (based on the DREZ therapy) the less entact the spinal cord is. I believe in a cure...I'm not setting around waiting on it, but I know its coming!
        Walkingagain, based on my experience this isn't true. I'm a T12 complete with pretty much a severed spinal cord (T11 vertebrae was sitting beside my T12 vertebrae after a sleepwalking fall) and have had no return of sensation or motor function below my injury level, and yet I have servere neuropathic pain. One line of thought is that neuropathic (central) pain is due to sprouting of new nerve fibres (into glial scar material) at the injury site. I agree with you, the cure is on it's way...but the big question is will it be able to rid us of this damn pain so that we can get on with our lives!!

        Geoman
        "Wheelie Wanna Walk!"

        Comment


          #34
          Gary, I wouldn't concider myself a new injury. I injuried in 2005 in a streetluge accident. Over the past two and one half years I have had two babies. (I kept the blood cord blood just in case). I live a really full life. However I'm with you the pain is sometimes too much to handle, but I just keep reading Stem Cell articles and gaining more hope I will be able to chase my baby girls someday.

          Geoman, no disrepect, but what did you sleepwalk off of...a plane or a building? Breaking your back from sleepwalking is not one I have heard of before. I'm sorry to hear that you were injured doing something that is supposed to be relaxing. Hopefully the cells rid the pain!

          Comment


            #35
            Originally posted by walkingagain View Post
            Gary, I wouldn't concider myself a new injury. I injuried in 2005 in a streetluge accident. Over the past two and one half years I have had two babies. (I kept the blood cord blood just in case). I live a really full life. However I'm with you the pain is sometimes too much to handle, but I just keep reading Stem Cell articles and gaining more hope I will be able to chase my baby girls someday.
            Why did I assume you were a new injury? (I ask myself not you)

            My apologies for assumptions.

            Great on the babies though!!!!!!

            I have two kids myself and love um lots!

            Gary
            Gary Is = L-1 Para for 34 years.....................
            ~~~~~~~~~~

            Comment


              #36
              Originally posted by Geoman View Post
              the cure is on it's way...but the big question is will it be able to rid us of this damn pain so that we can get on with our lives!!

              Geoman
              Yeah.......... Would it?
              Gary Is = L-1 Para for 34 years.....................
              ~~~~~~~~~~

              Comment


                #37
                Originally posted by walkingagain View Post
                Geoman, no disrepect, but what did you sleepwalk off of...a plane or a building? Breaking your back from sleepwalking is not one I have heard of before. I'm sorry to hear that you were injured doing something that is supposed to be relaxing. Hopefully the cells rid the pain!
                walkingagain, streetluge!? please tell more. Is that anything like skitching?

                My accidient wasn't so much a fall, but a dive...out of a loft bedroom at our holiday cabin in 2007. After swimming in the dam with one of my boys the day before I must've been dreaming that I was a champion diver...It is a bit unusual, but I have since heard of a few other sleepwalking horror stories.
                "Wheelie Wanna Walk!"

                Comment


                  #38
                  Gary, No problem I can see why you would ask! I hope the cure will help pain!

                  Geoman, wow that has to be the most unique SCI story I've heard, sorry about that! Skitching...well not exactly. Its actually alot like Ice Luge, but with wheels. Here is a link

                  http://www.youtube.com/user/walkinga.../1/ABGUaVWrVvY

                  Comment


                    #39
                    Originally posted by walkingagain View Post
                    Gary, No problem I can see why you would ask! I hope the cure will help pain!

                    Geoman, wow that has to be the most unique SCI story I've heard, sorry about that! Skitching...well not exactly. Its actually alot like Ice Luge, but with wheels. Here is a link

                    http://www.youtube.com/user/walkinga.../1/ABGUaVWrVvY
                    Hi, are you Stacy? Man O man I watched the video! This is a wild sport and it looks like fun!!!

                    So sorry for what happened, but you do have a great attitude. You will progress for certain, you are one tough woman. Thanks for the example.

                    Gary
                    Gary Is = L-1 Para for 34 years.....................
                    ~~~~~~~~~~

                    Comment


                      #40
                      Originally posted by walkingagain View Post
                      Geoman, wow that has to be the most unique SCI story I've heard, sorry about that! Skitching...well not exactly. Its actually alot like Ice Luge, but with wheels. Here is a link
                      Thanks for the link, I have seen this before but didn't know what it was called. Looks like heaps of fun, are you still involved in that scene? I used to compete in the downhill event (skiing) in what seems like a different life now, which would have been a similar buzz to the street-luge. I gave sit-skiing a go a couple of years ago, but the pain just got in the way too much...Skitching was heaps of fun when I was a kid too!

                      Geoman
                      "Wheelie Wanna Walk!"

                      Comment


                        #41
                        DREZ at Craig CA-DREZ

                        Garyis

                        Long post but similar to your experience. I have considered the CA-DREZ carefully as it is a very invasive procedure, a last resort at this time and I am ready for it if the evaluation shows promise.

                        I have been following your posts on the DREZ as it seems I could be writing it. I was injured in 1976 at age 34, yep I am 69 right now. My level is T10 - Ll, Harrington Rods which fracture and were removed in 2008. I have been with the same Medicare Advantage provider (Secure Horizons) and the same Medical Group since 1989. A referral for a DREZ evaluation from my pain management group was submitted to my medical group in January 2010 which was approved. After seeing two neurosuregenon I still did not have the evaluation, but both recommended that I look into Computer Assisted DREZ as done by Dr. Falci at Craig. The group approved the evaluation but insisted they could do it in group. I was then sent to UCLA and UCSF, neither one would make an appointment for DREZ or CA-DREZ. I appealed to Secure Horizons for the evaluation at Craig, denied because it can be done in California. I go to the next level of appeal with MAXIMUS, they agree with Secure Horizons that it can be done in California. I send MAXIMUS the information about UCLA and UCSF and they reopen the appeal. Dr. Falciā€™s office tells me they accept Medicare for the CA-DREZ, I am about to send the information to MAXIMUS when I receive a letter from them, August 30, 2011 (attached). Up to this time all the denials have been because the procedure could be done within the Secure Horizons network in California, now the reason is because the CA-DREZ is not a covered benefit. The doctor review from MAXIMUS is a bit ambiguous, it seems that CA-DREZ is out but DREZ is in. It will be interesting to see where Secure Horizons will send me next as they have been unable to get me a CA-DREZ or a DREZ evaluation up to now. It has taken 20 months sending me around to providers that could not do either evaluation and now they say that CA-DREZ is not even covered! I just love insurance people. The next level of appeal is the Administrative Law Judge (ALJ) hearing. I have been to one of these before and had the decisions of denial for DME Supplies overturned, but not for all Medicare Beneficiaries, just for me and that did not make any sense to me. I am ready at this time to dis-enroll from SH and go back into fee for service Medicare because I believe it will take longer than the end of the year to resolve this. You would think that if Dr. Falci is getting paid by Medicare for the procedure it would stand to reason SH would have to cover it per 42 CRF 422.101 that basically says that the health plan must pay for a service or item if regular Medicare would pay it.

                        Question for Garyis - are you a Medicare beneficiary?

                        Bob S


                        Originally posted by Garyis View Post
                        Geoman, It can't happen!

                        Last friday, after about a dozen phone talks over a 4 month time span with folks from my insurance and from Craig, all of which got me no where. Nobody knew why I have not received any word on the approval, the CFO from Craig called me and she spoke with me for half an hour and she is a incredulous as I am.

                        The deal is, and I'll keep it short; Even tho Craig works with insurance companies from over 20 states, all on a case by case basis, Washington State will not do so. They want Craig to sign on as a provider. Craig does not do this, never has. Even the Colorado Workmans Comp is not a provider, but works with Craig on a case by case basis and no SCI has ever been denied access to craig.

                        That said, Washington State will only pay half of what the costs are. BUT.

                        Washington State does not accept DREZ to be a medical necessity! Soeven if Craig was a provider they would not approve the surgery. The first 3 months was W.S. trying to get Craig to sign, even knowing that they would not approve the surgery!

                        I asked why they paid for me to get the evaluation and was told that they never did pay the bill even tho they authorized it. They did not bill me because they saw that it was not my fault and Craig wrote it off. Doctor Falci was paid on a ONE TIM ONLY rule. As was Craig was back in 1992, they paid for the rehab for an SCI, and that was Craig's ONE TIME ONLY!

                        If you live in Washington and have WC or Qualis for insurance forget the DREZ, they won't pay.

                        This after waiting for over six months.

                        Now, it is living my life out with fukin pain, excuse me my no-life.

                        Comment


                          #42
                          CA-DREZ MAXIMUS Reply

                          I failed to attach the denial from MAXIMUS for the CA-DREZ.

                          Bob S

                          Comment


                            #43
                            Originally posted by sumoski View Post
                            Garyis

                            Long post but similar to your experience. I have considered the CA-DREZ carefully as it is a very invasive procedure, a last resort at this time and I am ready for it if the evaluation shows promise.

                            I have been following your posts on the DREZ as it seems I could be writing it. I was injured in 1976 at age 34, yep I am 69 right now. My level is T10 - Ll, Harrington Rods which fracture and were removed in 2008. I have been with the same Medicare Advantage provider (Secure Horizons) and the same Medical Group since 1989. A referral for a DREZ evaluation from my pain management group was submitted to my medical group in January 2010 which was approved. After seeing two neurosuregenon I still did not have the evaluation, but both recommended that I look into Computer Assisted DREZ as done by Dr. Falci at Craig. The group approved the evaluation but insisted they could do it in group. I was then sent to UCLA and UCSF, neither one would make an appointment for DREZ or CA-DREZ. I appealed to Secure Horizons for the evaluation at Craig, denied because it can be done in California. I go to the next level of appeal with MAXIMUS, they agree with Secure Horizons that it can be done in California. I send MAXIMUS the information about UCLA and UCSF and they reopen the appeal. Dr. Falci’s office tells me they accept Medicare for the CA-DREZ, I am about to send the information to MAXIMUS when I receive a letter from them, August 30, 2011 (attached). Up to this time all the denials have been because the procedure could be done within the Secure Horizons network in California, now the reason is because the CA-DREZ is not a covered benefit. The doctor review from MAXIMUS is a bit ambiguous, it seems that CA-DREZ is out but DREZ is in. It will be interesting to see where Secure Horizons will send me next as they have been unable to get me a CA-DREZ or a DREZ evaluation up to now. It has taken 20 months sending me around to providers that could not do either evaluation and now they say that CA-DREZ is not even covered! I just love insurance people. The next level of appeal is the Administrative Law Judge (ALJ) hearing. I have been to one of these before and had the decisions of denial for DME Supplies overturned, but not for all Medicare Beneficiaries, just for me and that did not make any sense to me. I am ready at this time to dis-enroll from SH and go back into fee for service Medicare because I believe it will take longer than the end of the year to resolve this. You would think that if Dr. Falci is getting paid by Medicare for the procedure it would stand to reason SH would have to cover it per 42 CRF 422.101 that basically says that the health plan must pay for a service or item if regular Medicare would pay it.

                            Question for Garyis - are you a Medicare beneficiary?

                            Bob S

                            I was injured in 1979 at age 39, now 73, we are close in years. growing old in a chair with chronic pain is a bitch!

                            NO! "now the reason is because the CA-DREZ is not a covered benefit."

                            This is where I ended up!

                            Yes I have medicare, (Medicare Advantage provider), but, I have another insurance that covers ONLY problems that have to do with my injury. med and my HMO who are connected refused and the other insurance company says (after 4m months of back and forth emails and phone calls) that the DREZ is not a viable surgery, period!

                            Craig cannot do for free, I asked. Medicare Advantage won't pay and my other insurance says no!

                            My only hope at this time is that there is a lawsuit filed against my other ins. trying to get the ins. to approve the DREZ. It seems that there has been several requests for DREZ on to this INS. and they filed a class action suit. It has been three years and nothing yet, but if it is approved than I may have the chance to get the DREZ.

                            BUT you may encounter another problem: at Craig the cut off age for doing the DREZ is 70!

                            I was approved because my health, my heart in particular, is in good condition. They considered me to be in the under 70 age bracket as far as my health. They have done two 70 year olds but did not tell me if the DREZ was successful. The surgery is about 12 hours - eight days pre op in the hospital and I forgot, maybe six/seven of those days you can't have any pain meds then and two to three weeks in the hospital post surgery.

                            Good Luck!
                            Last edited by Garyis; 6 Sep 2011, 7:13 PM. Reason: Language errors
                            Gary Is = L-1 Para for 34 years.....................
                            ~~~~~~~~~~

                            Comment


                              #44
                              DREZ procedure for teenager

                              I've been reading all the threads about the DREZ procedure. I was informed today that my 19yr old daughter was not a candidate for the dorsal column stimulator for her pain but this procedure may help. It looks scary for anyone but she is 19 and suffered a brachial plexus injury when she was 2 1/2. Chronic pain began at age 14 and has completely devastated her life. She dropped out of school, is on a slew of medicines and suffers from depression and anxiety. She was on oxy30's and when her tolerance peaked she turned to heroin. She is illegal drug free except for pot which calms her and helps her sleep. She is at her end with the pain and doesn't want to turn to street drugs again but no dr will give her opiates due to her addiction history. She rarely gets out of bed anymore. Given the fact that she is so young does anyone have any encouraging news? I am desperate to help her because I think her pain will cause her to self medicate and she will spiral out of control.

                              Comment


                                #45
                                Originally posted by Sgttibs View Post
                                I've been reading all the threads about the DREZ procedure. I was informed today that my 19yr old daughter was not a candidate for the dorsal column stimulator for her pain but this procedure may help. It looks scary for anyone but she is 19 and suffered a brachial plexus injury when she was 2 1/2. Chronic pain began at age 14 and has completely devastated her life. She dropped out of school, is on a slew of medicines and suffers from depression and anxiety. She was on oxy30's and when her tolerance peaked she turned to heroin. She is illegal drug free except for pot which calms her and helps her sleep. She is at her end with the pain and doesn't want to turn to street drugs again but no dr will give her opiates due to her addiction history. She rarely gets out of bed anymore. Given the fact that she is so young does anyone have any encouraging news? I am desperate to help her because I think her pain will cause her to self medicate and she will spiral out of control.
                                Well, this is a serious situation for sure. I am familiar with folks who have turned to serious drug use when legal meds could not be aquired and then the trouble is on. In your situation I would definitely check out the DREZ at Craig Hospital. They will do a through evaluation on your daughters condition and make recommendations for various treatments. Make sure that you contact DR Falcis office as your first inquiry. You will need two separate appointments, one for Dr Falci and one for the evaluation.

                                Go for it! Maybe the DREZ is not the thing for your daughter but it won't hurt to check it out, and an evaluation at Craig may open some doors for your daughter to begin or be allowed to get prescriptions for pain meds? Good luck!
                                Last edited by Garyis; 26 Jan 2012, 1:06 AM. Reason: spelling
                                Gary Is = L-1 Para for 34 years.....................
                                ~~~~~~~~~~

                                Comment

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