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    #31
    "Should people go and pay for a therapy that works only in 1 out of 20 patients or even 1 out of 5 people?"

    Those odds are fine with me. They are better then anything else on the market at this time. I realize they haven't published anything.

    I've spent the last 7 years since my injury following the vast majority of the research. And the one thing I've kept in my mind for all this time is what Dr. Lima told me years ago. "If anyone promises you a cure, get away as fast as you can." I still maintain that anyone that thinks there is a "perfect cure all" coming, is fooling themselves. I just don't believe it. NO ONE at X-Cell promised me anything. Every doctor I spoke with their several times told me there was no promise of anything. Only what they had seen. They told me of patients that saw nothing, no return. That is a safe risk in my mind.

    If you never risk anything, you will never get better. I don't want to come off sounding bitter. But, I've worked in out patient rehab as a trainer, worked in gait labs. And the one common theme that I've seen with the vast majority of sci patients around the country and around the world is that most are scared. And they are scared to try anything, they are fearful of putting themselves out there. I've meet plenty of people that are in a chair and aren't really willing to put the work in to get better, or to be more functional. Most of those are the ones all saying that a cure is coming, and they will be better. Almost every person I've meet that has had an injury and asked what I did to get out of the chair, after telling them, they say its too hard and they couldn't have done it. What makes anyone think a "cure" will make it any easier? Don't fool yourself, a "cure" is not and will not be a substitute for hundreds or hours and years of hard work.

    Comment


      #32
      Originally posted by matt414 View Post
      "Should people go and pay for a therapy that works only in 1 out of 20 patients or even 1 out of 5 people?"

      Those odds are fine with me. They are better then anything else on the market at this time. I realize they haven't published anything.

      I've spent the last 7 years since my injury following the vast majority of the research. And the one thing I've kept in my mind for all this time is what Dr. Lima told me years ago. "If anyone promises you a cure, get away as fast as you can." I still maintain that anyone that thinks there is a "perfect cure all" coming, is fooling themselves. I just don't believe it. NO ONE at X-Cell promised me anything. Every doctor I spoke with their several times told me there was no promise of anything. Only what they had seen. They told me of patients that saw nothing, no return. That is a safe risk in my mind.

      If you never risk anything, you will never get better. I don't want to come off sounding bitter. But, I've worked in out patient rehab as a trainer, worked in gait labs. And the one common theme that I've seen with the vast majority of sci patients around the country and around the world is that most are scared. And they are scared to try anything, they are fearful of putting themselves out there. I've meet plenty of people that are in a chair and aren't really willing to put the work in to get better, or to be more functional. Most of those are the ones all saying that a cure is coming, and they will be better. Almost every person I've meet that has had an injury and asked what I did to get out of the chair, after telling them, they say its too hard and they couldn't have done it. What makes anyone think a "cure" will make it any easier? Don't fool yourself, a "cure" is not and will not be a substitute for hundreds or hours and years of hard work.
      You were an incomplete to begin with. Show us one instance
      where a complete sci regained what you regained through Xcell's
      treatment. Just post one case where someone went from ASIA
      A to ASIA B.

      Also, post a statement from one legit sci researcher who claimed
      that they could cure people 100%.

      I'm a complete and would rather put the tens of thousands
      toward research that will at least give me some function to
      start with, than give it to people who are taking advantage
      of the desperate.

      If their treatment worked so well, why are they avoiding the
      global sci market? There are millions of people around the world
      who would love the opportunity to receive treatment. All Xcell
      would have to do is receive FDA approval and insurance will
      pay for it.

      You've been duped and have no concept of how the spinal cord
      works and what must be achieved to repair it, or how function
      should return after a treatment. How do you know you're not
      experiencing the placebo effect? Have your ASIA scores changed?
      Last edited by Buck503; 30 Dec 2010, 3:35 AM.

      Comment


        #33
        Thanks for the update regarding your treatment in Germany. As a practicing academic neurosurgeon, I would agree with many of the posts regarding the actual efficacy of stem cell treatment and lack of peer reviewed literature.

        Dr. Wise brings up the issue of placebo effect but your response with reduction of pain and improved motor function may have another explanation. Your MRI scan from 2008 shows a focal but significant post traumatic syrinx below the site of injury. I assume that the stem cell injections were into this cyst and this would correlate with your postoperative headaches. A needle puncture into the syrinx may have been sufficient to result in your improvement by altering the dynamics of the cyst. The primary risks of the needle placement are not insignificant and therefore surgical treatment of a post traumatic syrinx is only considered if there is evidence of localized arachnoiditis and documented enlargement of the cyst. Placement of the stem cells may not be the source of your improvement and while some on the list may feel that needle drainage of a post traumatic syrinx may seem reasonable, there are definite risks and in the absence of any data to indicate long term improvement would be hard to recommend.

        Comment


          #34
          Matt, I appreciate all the information you have shared with us, thank you! This is exactly why I am a member of CC, to learn what others are experiencing.

          Each of us has to make our own decisions based on injury, return, results from therapy, pain tolerance, etc.. it is all very personal. Sounds to me that you made the best decision for you and I have learned a great deal from your story.

          I have contacted XCell a few times and submitted a medical history on my son. Surprisingly I did not hear back, maybe they dont feel he is a good candidate. Since that time I have decided that XCell is most likely not the best place for my son. I am hoping to get him involved in some other treatments... this is what I feel is best for him and only him.

          Please keep us posted on your continued recovery. Happy New Year!!!

          Comment


            #35
            Matt and Neuropod,

            I Appreciate your perspectives. Reality is complex, while the human mind loves simplicity.

            Comment


              #36
              Originally posted by matt414 View Post
              "Should people go and pay for a therapy that works only in 1 out of 20 patients or even 1 out of 5 people?"

              Those odds are fine with me. They are better then anything else on the market at this time. I realize they haven't published anything.

              I've spent the last 7 years since my injury following the vast majority of the research. And the one thing I've kept in my mind for all this time is what Dr. Lima told me years ago. "If anyone promises you a cure, get away as fast as you can." I still maintain that anyone that thinks there is a "perfect cure all" coming, is fooling themselves. I just don't believe it. NO ONE at X-Cell promised me anything. Every doctor I spoke with their several times told me there was no promise of anything. Only what they had seen. They told me of patients that saw nothing, no return. That is a safe risk in my mind.

              If you never risk anything, you will never get better. I don't want to come off sounding bitter. But, I've worked in out patient rehab as a trainer, worked in gait labs. And the one common theme that I've seen with the vast majority of sci patients around the country and around the world is that most are scared. And they are scared to try anything, they are fearful of putting themselves out there. I've meet plenty of people that are in a chair and aren't really willing to put the work in to get better, or to be more functional. Most of those are the ones all saying that a cure is coming, and they will be better. Almost every person I've meet that has had an injury and asked what I did to get out of the chair, after telling them, they say its too hard and they couldn't have done it. What makes anyone think a "cure" will make it any easier? Don't fool yourself, a "cure" is not and will not be a substitute for hundreds or hours and years of hard work.
              I understand and thank you for your perspective. Fear of failure holds a lot of people back and it is true that you will not gain much by not trying. There are no guarantees that a therapy will work. Also, as you can see, there are people who are extremely skeptical. In fact, it is more difficult to publish spinal cord injury studies, particularly positive results because so many people are skeptical. The level of proof for efficacy of spinal cord injury therapies is very high.

              On the other hand, people do need to be skeptical about therapies that have only anecdotal evidence to support efficacy, the rate of positive reports is less than placebo response, the treatment relies on some unknown or unsubstantiated mechanism of action, and lots of people report that the therapy had no effect on them. This is not about a cure but whether there is convincing evidence that a therapy is effective.

              By the way, my objection to the X-cell therapy is not that they claim to cure spinal cord injury (I agree that they do not claim that their therapy cures spinal cord injury) or even with the concept of using bone marrow stem cells to treat spinal cord injury. There is actually quite a lot of animal work suggesting that bone marrow stem cells are effective when transplanted to the spinal cord.

              My objection is that this group has not published their results in a respected peer-reviewed journal. I understand that they want to do so. There is little convincing data that intrathecally administered bone marrow cells are useful for spinal cord injury. If they show that the therapy is effective, the company will benefit tremendously. Given the number of patients they have treated, the lack of publications is worrisome.

              Wise.
              Last edited by Wise Young; 31 Dec 2010, 6:20 PM.

              Comment


                #37
                Originally posted by Wise Young View Post
                I understand and thank you for your perspective. Fear of failure holds a lot of people back and it is true that you will not gain much by not trying. There are no guarantees that a therapy will work. Also, as you can see, there are people who are extremely skeptical. In fact, it is more difficult to publish spinal cord injury studies, particularly positive results because so many people are skeptical. The level of proof for efficacy of spinal cord injury therapies is very high.

                On the other hand, people do need to be skeptical about therapies that have only anecdotal evidence to support efficacy, the rate of positive reports is less than placebo response, the treatment relies on some unknown or unsubstantiated mechanism of action, and lots of people report that the therapy had no effect on them. This is not about a cure but whether there is convincing evidence that a therapy is effective.

                By the way, my objection to the X-cell therapy is not that they claim to cure spinal cord injury (I agree that they do not claim that their therapy cures spinal cord injury) or even with the concept of using bone marrow stem cells to treat spinal cord injury. There is actually quite a lot of animal work suggesting that bone marrow stem cells are effective when transplanted to the spinal cord.

                My objection is that this group has not published their results in a respected peer-reviewed journal. I understand that they want to do so. There is little convincing data that intrathecally administered bone marrow cells are useful for spinal cord injury. If they show that the therapy is effective, the company will benefit tremendously. Given the number of patients they have treated, the lack of publications is worrisome.

                Wise.
                Dr Dr Wise

                Many thanks for your reply and agree that XCell has little evidence to substantiate their claims, however for people in pain and only hope for some relief that for example my cervical myelomalacia causes is stem cell treatment - the only current viable option for me who is willing to attempt stem cell treatment is XCell, however although I am aware that the chance of success is very low, I am willing to take this only chance. Nevertheless as indicated in a previous post my fear lies with the safety aspects of the treatment. It seems from the number of transplants that XCell has performed over the last 4 years that there is little evidence to indicate any short term development of tumours but have you any knowledge that such spinal fluid implantations can cause tumours to develop long term.

                Many thanks for any comments you can make in regards to safety

                Comment


                  #38
                  Originally posted by matt414 View Post
                  "Should people go and pay for a therapy that works only in 1 out of 20 patients or even 1 out of 5 people?"

                  Those odds are fine with me. They are better then anything else on the market at this time. I realize they haven't published anything.

                  I've spent the last 7 years since my injury following the vast majority of the research. And the one thing I've kept in my mind for all this time is what Dr. Lima told me years ago. "If anyone promises you a cure, get away as fast as you can." I still maintain that anyone that thinks there is a "perfect cure all" coming, is fooling themselves. I just don't believe it. NO ONE at X-Cell promised me anything. Every doctor I spoke with their several times told me there was no promise of anything. Only what they had seen. They told me of patients that saw nothing, no return. That is a safe risk in my mind.

                  If you never risk anything, you will never get better. I don't want to come off sounding bitter. But, I've worked in out patient rehab as a trainer, worked in gait labs. And the one common theme that I've seen with the vast majority of sci patients around the country and around the world is that most are scared. And they are scared to try anything, they are fearful of putting themselves out there. I've meet plenty of people that are in a chair and aren't really willing to put the work in to get better, or to be more functional. Most of those are the ones all saying that a cure is coming, and they will be better. Almost every person I've meet that has had an injury and asked what I did to get out of the chair, after telling them, they say its too hard and they couldn't have done it. What makes anyone think a "cure" will make it any easier? Don't fool yourself, a "cure" is not and will not be a substitute for hundreds or hours and years of hard work.
                  OK. But Matt that is a point, those who keep fit are doing ground work that will stand them well when the cure arrives. They are most likely to be self starters, and they need to be. I've said, as others that the in care treatment and rehab is great, BUT on leaving it, too many say goodbye to any formalised health regime. A large part of this of this is that post rehab care, at least in the UK, stinks. The tacit reason is why bother? maintaining the parts that don't work is pointless, as they will never be needed, and of course this is great news for the bean counters. Hundreds of hours of hard work sounds a bit like hoping to join the SAS, especially when there is so little available in the community for this. I might add that however good the staff at SCI units are, and they are very good, their is an unspoken rule that no one mentions cure; it's on a par with going to a barmitza and asking if anyone is for a pork chop.

                  One of my sisters in law is a community nurse and got to know a quad quite well, who found a girl friend. She told my wife that he had since died: the reason was a heart attack. Compromised heart and respiratory functions are inevitable consequences of chronic wheel chair living.
                  2010 SCINet Clinical Trial Support Squad Member
                  Please join me and donate a dollar a day at http://justadollarplease.org and copy and paste this message to the bottom of your signature.

                  Comment


                    #39
                    Originally posted by Buck_Nastier View Post
                    You were an incomplete to begin with. Show us one instance
                    where a complete sci regained what you regained through Xcell's
                    treatment. Just post one case where someone went from ASIA
                    A to ASIA B.

                    Also, post a statement from one legit sci researcher who claimed
                    that they could cure people 100%.

                    I'm a complete and would rather put the tens of thousands
                    toward research that will at least give me some function to
                    start with, than give it to people who are taking advantage
                    of the desperate.

                    If their treatment worked so well, why are they avoiding the
                    global sci market? There are millions of people around the world
                    who would love the opportunity to receive treatment. All Xcell
                    would have to do is receive FDA approval and insurance will
                    pay for it.

                    You've been duped and have no concept of how the spinal cord
                    works and what must be achieved to repair it, or how function
                    should return after a treatment. How do you know you're not
                    experiencing the placebo effect? Have your ASIA scores changed?
                    I do hope that you are doctor. This is the sort of patronising remark that really gets to me. In the UK payment should not be an issue, as we have paid NI contributions. I am so sick of people on this and other forums that talk like this.

                    Do you know what separates a corpse from a man without hope? It's 60 heart beats a minute.

                    The surgeon who helped me to be here today was doing cutting edge stuff. He didn't whine about risks he just got on with it. It was a gamble but it had paid off. It's another step to helping others in this predicament in future.
                    2010 SCINet Clinical Trial Support Squad Member
                    Please join me and donate a dollar a day at http://justadollarplease.org and copy and paste this message to the bottom of your signature.

                    Comment


                      #40
                      Originally posted by chris arnold View Post
                      I do hope that you are doctor. This is the sort of patronising remark that really gets to me. In the UK payment should not be an issue, as we have paid NI contributions. I am so sick of people on this and other forums that talk like this.

                      Do you know what separates a corpse from a man without hope? It's 60 heart beats a minute.

                      The surgeon who helped me to be here today was doing cutting edge stuff. He didn't whine about risks he just got on with it. It was a gamble but it had paid off. It's another step to helping others in this predicament in future.
                      You clearly support the clinical trial process and real research,
                      yet you're put off by my defending it?

                      How are you not offended by Matt414's comments? He clearly
                      says that you're lying to yourself if you believe that legit
                      research will produce a treatment.

                      Originally posted by matt414 View Post
                      Well, to be honest, there isn't a cure coming. I am not gonna really go into it. But to be honest, if you think a cure is coming, you're lying to yourself. A cure doesn't make financial sense, even if it were possible. And second, people believe that you can be in a chair for years on end, then just all of a sudden walk and rebuilt your muscle/nervous system? But, I am not gonna take what you hold onto away if it helps you sleep at night.
                      But I'm the one who's patronizing.

                      Reading is fundamental.
                      Last edited by Buck503; 1 Jan 2011, 7:21 PM.

                      Comment


                        #41
                        Sorry but this does not follow. Of course I support research. What Matt is surely doing is to make a point in it's favour. What he has been prepared to do is what my surgeon did for me. It was pretty cutting edge. The anesthetist told my wife "He's the best."

                        I take it Buck, that you are supporting research.
                        2010 SCINet Clinical Trial Support Squad Member
                        Please join me and donate a dollar a day at http://justadollarplease.org and copy and paste this message to the bottom of your signature.

                        Comment


                          #42
                          Another thought on this occurred as I saw StemCells&AtomBombs on the forum. Wise has said that funding is needed. Indeed it is crucial. StemCells&AtomBombs makes clear what we all know deep down. The Pentagon already has enough fire power to fry the globe many times over, but the American right wing sees continuing investment in destruction as better than funding something creative.

                          Stem cell research promises a cross discipline methodology for medicine.

                          What I have said, or implied is that anyone who suggests anything "outside the box" is not snake oil vending, and I am willing to accept that some of these offers are ill founded. If we all decided to be thoroughly cynical we could examine the proposition: "Pharmaceutical companies exist primarily to keep their share holders happy".
                          2010 SCINet Clinical Trial Support Squad Member
                          Please join me and donate a dollar a day at http://justadollarplease.org and copy and paste this message to the bottom of your signature.

                          Comment


                            #43
                            Originally posted by matt414 View Post
                            My results as of 12 weeks post injection. Do I think this is some "miracle fix all cure"? No. But, I do not believe that will EVER happen. I think that it is the best option that is currently out there. For me, the biggest issue is that my nerve pain has been pretty drastically reduced. Like I said before, most days I was around an 8, keep in mind I have what I consider a high pain tolerance after breaking literally the vast majority of the bones in my body before my sci. Now, I am around a 3-4. The nerve pain in my feet/legs never really changes. It never really gets worse, and never gets better. About 2 weeks post injection, the pain at dropped off a good bit. My bladder is what I would consider slightly better. Nothing huge, but I do seem to have the ability to hold it longer as well as an easier time going. The biggest thing though would be in muscle strength/re-growth. In my thighs, the vastus intermedius never came back after my injury. Now, on both legs it is visible in size and is functional. I have a noticeable increase in strength in both my glutes and hamstring areas. There is also a slight increase in my sensation in my feet, which is helping my single leg balance slightly. I haven't seen any decrease in my spasticity yet. My bowel issues aren't really any better I would say.

                            To be honest, if I can come up with the money to go back again next fall, I will most likely return for a second treatment. Do I think its a cure all? No. But, like I said, i don't think there ever will be one. For me, it was about trying to reduce my pain in my feet/legs and knowing that I was out of options. I think even if things hadn't gotten any better, I would have felt better just knowing I was out of options. I think for anyone that has some function, walking, or close to waling, I think it would be a worth wild trip. Do I think if someone is a complete injury with little to no movement or anything, is it worth it? No.
                            OK, so a couple observations from the above section of the OP. The OP does not believe in a cure, now or in the future. The OP went into this "treatment" being told there was NO PROMISE of a cure, and only SLIGHTLY recognizes improvement 12 weeks (3 months) after "treatment". If we look at the post of Neuropod it says:
                            Originally posted by Neuropod
                            Thanks for the update regarding your treatment in Germany. As a practicing academic neurosurgeon, I would agree with many of the posts regarding the actual efficacy of stem cell treatment and lack of peer reviewed literature.

                            Dr. Wise brings up the issue of placebo effect but your response with reduction of pain and improved motor function may have another explanation. Your MRI scan from 2008 shows a focal but significant post traumatic syrinx below the site of injury. I assume that the stem cell injections were into this cyst and this would correlate with your postoperative headaches. A needle puncture into the syrinx may have been sufficient to result in your improvement by altering the dynamics of the cyst. The primary risks of the needle placement are not insignificant and therefore surgical treatment of a post traumatic syrinx is only considered if there is evidence of localized arachnoiditis and documented enlargement of the cyst. Placement of the stem cells may not be the source of your improvement and while some on the list may feel that needle drainage of a post traumatic syrinx may seem reasonable, there are definite risks and in the absence of any data to indicate long term improvement would be hard to recommend.
                            From this post it seems like the cells may have been placed at/around/in the level of the cyst, and that the cyst itself might have been altered (shrunk?) because of the treatment at X-Cell. If the cyst itself were altered, it could have reduced pressure on the spinal cord resulting in the slight improvements noted by the OP.
                            I have to say that in the absence of follow up studies by a spinal cord injury specialist who is not involved with X-Cell I can not say that I would spend untold thousands of dollars to travel to Germany for an unproven, non peer reviewed, non published, potentially dangerous TRIAL.
                            ~Mandy~
                            SCI as a result of spinal surgery
                            TiLite Aero Z!!!

                            Comment


                              #44
                              Originally posted by CurvySAT05 View Post
                              OK, so a couple observations from the above section of the OP. The OP does not believe in a cure, now or in the future. The OP went into this "treatment" being told there was NO PROMISE of a cure, and only SLIGHTLY recognizes improvement 12 weeks (3 months) after "treatment". If we look at the post of Neuropod it says:

                              From this post it seems like the cells may have been placed at/around/in the level of the cyst, and that the cyst itself might have been altered (shrunk?) because of the treatment at X-Cell. If the cyst itself were altered, it could have reduced pressure on the spinal cord resulting in the slight improvements noted by the OP.
                              I have to say that in the absence of follow up studies by a spinal cord injury specialist who is not involved with X-Cell I can not say that I would spend untold thousands of dollars to travel to Germany for an unproven, non peer reviewed, non published, potentially dangerous TRIAL.

                              I was not injected at my injury level. It was much lower, L5-S1. That was a guess by Neurpod. He has seen my MRI films and seen the damage to my cord.

                              I am done with posting anything on this forum. If anyone has any interest in more, feel free to email me. But, I don't think my time is worth even talking about this on here.

                              Wise, thanks for taking the time to have an open mind on this.

                              And a last comment, I've seen improvements in my body from this. If you don't believe me, or the process. That is fine. I have nothing to prove to anyone about anything. Just thought I would share my trip and results to maybe help anyone out there. And for what's worth, I've already decided that if I can get the funding, I will go back again next fall for another treatment.

                              Comment


                                #45
                                Originally posted by matt414 View Post
                                I was not injected at my injury level. It was much lower, L5-S1. That was a guess by Neurpod. He has seen my MRI films and seen the damage to my cord.

                                I am done with posting anything on this forum. If anyone has any interest in more, feel free to email me. But, I don't think my time is worth even talking about this on here.

                                Wise, thanks for taking the time to have an open mind on this.

                                And a last comment, I've seen improvements in my body from this. If you don't believe me, or the process. That is fine. I have nothing to prove to anyone about anything. Just thought I would share my trip and results to maybe help anyone out there. And for what's worth, I've already decided that if I can get the funding, I will go back again next fall for another treatment.

                                Matt, Thanks for posting the results from your trip to X Cell. It's amazing the beating you took on this forum just trying to give some first hand details of your treatment, experience and outcome from your trip to X Cell. Glad to hear you have seen some improvements and I truly hope they continue.

                                Rick

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