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    #61
    @RDF - he had a wicked headache the morning after the first spinal canal injection, but that was it, and that's supposed to be pretty common. He didn't go straight to bed after the injection that day like he was supposed to, so that may have exacerbated it.

    @NoDecaf - if I thought there were going to be any clinical trials going on in the US in the next 5-10 years for chronic SCI patients that Daniel actually had a chance of getting into, we would have waited. But the chances that he ever would have been accepted into a trial are so small that missing that opportunity is not a big concern for me. Anyway, it's all a personal decision. You know people who have spent money and gotten nothing back - I know people who have spent money and been happy with the results. I certainly agree with your other points.

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      #62
      Originally posted by rahilka View Post
      @RDF - he had a wicked headache the morning after the first spinal canal injection, but that was it, and that's supposed to be pretty common. He didn't go straight to bed after the injection that day like he was supposed to, so that may have exacerbated it.

      @NoDecaf - if I thought there were going to be any clinical trials going on in the US in the next 5-10 years for chronic SCI patients that Daniel actually had a chance of getting into, we would have waited. But the chances that he ever would have been accepted into a trial are so small that missing that opportunity is not a big concern for me. Anyway, it's all a personal decision. You know people who have spent money and gotten nothing back - I know people who have spent money and been happy with the results. I certainly agree with your other points.
      Rahilka,

      I want to thank you for sharing what you and your brother are doing. Sharing this experience with us is a great service to all of us and perhaps for the progress of SCI research.
      Please don't give up posting should some posts of CC members dicourage you from doing so.
      All my best to you and especially to your brother!

      Paolo
      In God we trust; all others bring data. - Edwards Deming

      Comment


        #63
        @Paolo - Thanks for the encouragement! Don't worry, I won't be run off! Anyway, I'm agnostic (though hopeful) about this whole thing - maybe we'll have great results, maybe we'll have none, but I know there are a lot of people on here who are really interested, so I'm definitely going to share either way.
        Last edited by rahilka; 12 Feb 2012, 7:53 PM. Reason: punctuation

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          #64
          Originally posted by rdf View Post
          Hi rahilka. Is your brother getting sick or having any side effects from the stem cells, or is all good in that area? I wish you all the best of luck.
          @RDF - You had asked if he was getting sick or having any side effects from the treatment. This weekend he started feeling sick, and today he felt really really awful (fever near 102F) - horrible head and backache, nausea, chills. My mom and I had both been sick the week before, so at first we thought maybe he just had what we had - and maybe he did, but worse. Hard to say, but the doctors have acknowledged this could be a reaction to the stem cells. They don't seem to think his reaction warrants serious concern right now, and he's feeling somewhat better this evening, so we're still going forward with treatment.

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            #65
            We're nearly done with treatment - we've been here four and a half weeks, and we're leaving on Sunday.

            Daniel has felt pretty rough most of the time here - frequent headaches from the lumbar punctures, as well as backaches from all the needles in the back. In just the last couple days, we've started to see the first few signs of something happening (other than very fast healing of a couple scrapes he got when he fell out of his wheelchair). Yesterday I felt voluntary muscle contractions in his right calf for the first time (he has weak muscles in both of his legs, but the right calf was the only area in which he had no movement/strength at all). Today he was flexing his chest, and said he could feel the flex through his full pectoral muscle for the first time. And - maybe the most exciting, as many of you will understand - this morning he was able to voluntarily hold his urine for a few minutes, and then voluntarily release. All small things, but exciting signs of what might be yet to come over the next several months.

            It'll take a week or two to get him back into physical therapy once we get to the US, but I hope to have his ASIA scores redone soon after that. I don't expect much difference at this point, but I still want to have them done, and we'll do it again in six months or so.

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              #66
              Thank you for the update
              "That's not smog! It's SMUG!! " - randy marsh, southpark

              "what???? , you don't 'all' wear a poop sac?.... DAMNIT BONNIE, YOU LIED TO ME ABOUT THE POOP SAC!!!! "


              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

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                #67
                I did it. I went there.
                I even live in Panama for 6 months of the year.
                Don't spend your money. Maybe later. NOT NOW.
                I was desperate. I understand. But it won't do anything. It didn't do anything for me. It didn't do anything for anyone one else I met there (autism,ms). It's not ready for prime time. We pay the money for them to do research. Early research without controls. I did a lot of research before hand and I knew it was a crapshoot.
                BUT I was influenced by reading respondants in forums, especially one woman who claimed good results. She's not making those claims anymore and seems like she regrets having done so.
                Yes, the facilities are fine, don't know status of doctors now- mine was very inexperienced. mesenchymal stem cells from my very own liposuction and donated cord blood. I saw the infusions. I felt the injections. I had the spinal injection with a fluroscope because of my spinal damage. OUCH! But serious caring doctors.
                But, don't.
                If you have lots of money, sure, go. ?Porque no? If you want to know more about my experience ask me.

                Comment


                  #68
                  Originally posted by rahilka View Post
                  @NoDecaf - if I thought there were going to be any clinical trials going on in the US in the next 5-10 years for chronic SCI patients that Daniel actually had a chance of getting into, we would have waited. But the chances that he ever would have been accepted into a trial are so small that missing that opportunity is not a big concern for me. Anyway, it's all a personal decision. You know people who have spent money and gotten nothing back - I know people who have spent money and been happy with the results. I certainly agree with your other points.
                  very good points, and i agree with the first part. but i also agree with decaf that getting some equipment would be a better investment. these people that have told you they are happy with their results, is that because they are trying to find a positive in wasting $40k? sorry if thats being harsh. i hope he does get something from this treatment and im thankful that your sharing with us. just my thoughts.

                  Comment


                    #69
                    Originally posted by vgraf View Post
                    I did it. I went there.
                    I even live in Panama for 6 months of the year.
                    Don't spend your money. Maybe later. NOT NOW.
                    I was desperate. I understand. But it won't do anything. It didn't do anything for me. It didn't do anything for anyone one else I met there (autism,ms). It's not ready for prime time. We pay the money for them to do research. Early research without controls. I saw the infusions. I felt the injections. I had the spinal injection with a fluroscope because of my spinal damage. OUCH!
                    @vgraf If you don't mind my question...other than the pain caused by the procedure, did you or the others have any neurological loss from doing it? Do you have additional ongoing unwarranted pain?
                    http://spinalcordresearchandadvocacy.wordpress.com/

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                      #70
                      @Vgraf - I'm surprised that you didn't meet anyone who had positive results. I think spinal cord injuries are one of the more difficult conditions they treat, with more variability in results. But I've met multiple people here with other issues (MS, CP, autism, rheumatoid arthritis) who have been very pleased with their results. How long ago were you here?

                      Originally posted by vgraf View Post
                      I did it. I went there.
                      I even live in Panama for 6 months of the year.
                      Don't spend your money. Maybe later. NOT NOW.
                      I was desperate. I understand. But it won't do anything. It didn't do anything for me. It didn't do anything for anyone one else I met there (autism,ms). It's not ready for prime time. We pay the money for them to do research. Early research without controls. I did a lot of research before hand and I knew it was a crapshoot.
                      BUT I was influenced by reading respondants in forums, especially one woman who claimed good results. She's not making those claims anymore and seems like she regrets having done so.
                      Yes, the facilities are fine, don't know status of doctors now- mine was very inexperienced. mesenchymal stem cells from my very own liposuction and donated cord blood. I saw the infusions. I felt the injections. I had the spinal injection with a fluroscope because of my spinal damage. OUCH! But serious caring doctors.
                      But, don't.
                      If you have lots of money, sure, go. ?Porque no? If you want to know more about my experience ask me.

                      Comment


                        #71
                        @Barrington - We already have some great exercise equipment - which I agree is a great investment. But it only gets him so far, and we wanted to do more. And there are people who really truly have gotten good results - I've met people here, spinal cord patients, who are repeat patients, and can show me things they can do that they weren't able to do 6-12 months ago, when they came for their first treatment. I don't think they're lying to me. Not everyone gets great results, and not everyone ends up thinking the money was worth it. But for those who are happy with their results, and coming back for more - it's not just wishful thinking on their part. Time will tell which group we end up in - but I am 100% certain that there is a group of people who experience meaningful positive benefits from this treatment.

                        Originally posted by Barrington314mx View Post
                        very good points, and i agree with the first part. but i also agree with decaf that getting some equipment would be a better investment. these people that have told you they are happy with their results, is that because they are trying to find a positive in wasting $40k? sorry if thats being harsh. i hope he does get something from this treatment and im thankful that your sharing with us. just my thoughts.

                        Comment


                          #72
                          pain etc following stem cells

                          Originally posted by GRAMMY View Post
                          @vgraf If you don't mind my question...other than the pain caused by the procedure, did you or the others have any neurological loss from doing it? Do you have additional ongoing unwarranted pain?
                          Immediately- no real neurolologic loss.
                          It was over 2 years ago. I have a progressive disease. So, hell, who can tell? Yes, I have additional neurologic loss.
                          Immediately after my month in Panama City, I worked with my PT for sensory recovery with nerve stimulation. I think that would have worked regardless of stem cells. Now ,though, I keep my sensory stim to a minimum because my pain has increased. More sensory capacity, existing damaged nerve pathways= more pain. I have more pain now.
                          The program in Panama relied alot on physical rehab training for regaining strength and ability. It's my experience that is the most important component. I think my money would have been better invested in lots of PT and equipment based on Dana and Christopher Reeves foundation protocol.
                          I did leave the program quite sick and very debilitated. I had had giardia the entire time and my doctor was too young to offer me anything but aloe vera. The last day, finally, the supervising doctor stepped in and gave me a prescription. I had gone to him before for help but it wasn't until I lost 30lbs in a month that he paid attention. A lot of giardia was going around Panama City that season.

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                            #73
                            Originally posted by intheknowstemcells View Post
                            Hello Wise. Thank you for responding and clearing that up. I can only read what they have on the site as of today. I did do some searching about cord blood HLA matching and would like to know your opinion on this: http://www.translational-medicine.com/content/5/1/8

                            Thank you.
                            Sorry for the delay in answering your question.

                            Thirty years of clinical experience using umbilical cord blood cells to replace bone marrow hematopoietic stem cells suggests that HLA-matching is indeed important for engraftment of cells. If you inject cells that are not HLA-matched at all, the chances are the hematopoietic stem cells will be rejected.

                            There are differences between cells, however. For example, bone marrow cells (from other donors must be perfect matches, i.e. 6:6 HLA, and preferably from close relatives or else the cells are rejected. The same is true for peripheral blood hematopoietic stem cells.

                            Umbilical cord blood cells, however, will often engraft even if they are only 4:6 HLA matched and don't have to come from a close relative. We don't understand the reasons why this is the case. Some people have speculated that umbilical cord blood cells are immature and don't present antigens that stimulate immune rejection. However, studies of umbilical cord blood cells have not supported this speculation. They express HLA-A, B, C, Dr, and other HLA-antigens that must be matched in order to prevent immune rejection.

                            One possibility is that some umbilical cord blood cells have anti-immune properties. Mesenchymal stem cells are also anti-immune because the can turn off inflammatory cells (such as Natural Killer cells and macrophages on contact). This is one of the reasons why unmatched mesenchymal cells are used as an anti-immune therapy when people develop a condition called graft-versus-host disease. The cells turn off the immune system and survive longer as result.

                            We have hypothesized in our laboratory that some umbilical cord blood cells and particularly stem cells express anti-immune molecules such as HLA-G. This may explain why umbilical cord blood cells will engraft even if they are mismatched for 2:6 HLA. We are testing this hypothesis right now. Regardless of mechanism, I believe that umbilical cord blood mononuclear cells that is not HLA-matched will eventually be rejected when they transplanted into the spinal cord. That is why we are using HLA-matched cells for our chronic spinal cord injury trial.

                            Wise.

                            Comment


                              #74
                              Originally posted by rahilka View Post
                              @Vgraf - I'm surprised that you didn't meet anyone who had positive results. I think spinal cord injuries are one of the more difficult conditions they treat, with more variability in results. But I've met multiple people here with other issues (MS, CP, autism, rheumatoid arthritis) who have been very pleased with their results. How long ago were you here?
                              Rahilka,
                              I too want to express my best wishes for you. Please don't mistake my skepticism. I do believe that eventually stem cells will hold real promise as a do-able therapy. I continue to follow stem cell research etc. I've noticed that bone marrow obtained mesenchymal s.c's have come to be preferred over fat derived. And I noticed with interest that is what is being done in Panama now.( Another change, my hotel was included in the charge.) When I had the procedure done,September 2009, bone marrow was only being done in Israel. I corresponded with the CEO of the franchising research organization, then Cell Medicine, before my procedure and I read persuasive and interesting research. The franchising organization is not responsible for the clinic or the doctors, just the medical protocol (for which they have patent rights) and they collect information to further their research. They have more clinics around the world.
                              I have been known to justify my huge expense as furthering reseach and helping other patients. I'll say that and picture you and your brother now.
                              Panama was just getting off the ground when I was there. Then the Costa Rican government closed the CR clinic and the two joined forces in Panama. (Panma is still unregulated and actively seeking medical tourism.) So there weren't as many patients as I expected. That said, I did have amazingly creative dreams after my injections and debilitating fatigue. I could tell something happened but I don't believe my body could do much with the cells in the form that I got them. And the PT alone has had as much effect for me at other times.
                              But it was 2 years ago and I think they didn't quite have their sh*t together. (no, don't tell someone to stop lyrica cold turkey for a month.) (yes, a spinal fusion will interfere with injections) (if spasticity meds are stopped, excessive spasticity will interfere with scheduled gym visits)( a month of truly severe headache, nausea, and diarrhea is not normal- it is not traveler's diarrhea)
                              Excuse me I digress- just reliving a little.
                              I can't recommend it to anyone. And I haven't seen any evidence otherwise.

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                                #75
                                Originally posted by rahilka View Post
                                @Barrington - We already have some great exercise equipment - which I agree is a great investment. But it only gets him so far, and we wanted to do more. And there are people who really truly have gotten good results - I've met people here, spinal cord patients, who are repeat patients, and can show me things they can do that they weren't able to do 6-12 months ago, when they came for their first treatment. I don't think they're lying to me. Not everyone gets great results, and not everyone ends up thinking the money was worth it. But for those who are happy with their results, and coming back for more - it's not just wishful thinking on their part. Time will tell which group we end up in - but I am 100% certain that there is a group of people who experience meaningful positive benefits from this treatment.
                                i would argue that they would have had those returns no matter what. some people recover. not every sci keeps in a chair for life. again i thank you for taking the time to share. ill continue to read despite my position on this.

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