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  • Stem Cell Institute in Panama

    I'll be accompanying my brother, a C3-C5 quad, to Panama City, Panama, for stem cell treatment at the Stem Cell Institute there. We'll be in Panama from Feb 4 - March 11. I know this is a subject a lot of you are interested in, and can be a difficult one to find good information on, so I invite any of you to follow along on his blog to learn more about the treatment and his results - http://danielleonard.weebly.com/ (most blog entries so far are about our fundraising efforts, but I'll start updating it with descriptions of the treatment as soon as we get to Panama). I'm also happy to answer any questions anyone has about how we chose Panama, fundraising, the travel experience, etc. - just email me at rahilka @ yahoo.com.

    Feel free to comment here in this forum, obviously, but please - if you don't agree with our decision to try this, go ahead and say so, but please keep the hating to a minimum. We realize it's experimental, and we want to try it anyway. I promise to be as unbiased as possible in my reporting of his results, to try to help anyone else who's considering doing this.

  • #2
    Also, if anyone on here has been to the Stem Cell Institute in Panama already, I'd love to hear about your experiences, and any advice you have.

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    • #3
      is there anywhere that I can read up on how they do the injection and what type of cells, some info on the procedure. I am interested over here
      "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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      • #4
        Sure - their website is http://www.cellmedicine.com/. The page detailing the protocol for spinal cord patients is http://www.cellmedicine.com/treatmen...l-cord-injury/.

        Let me know if you have any other questions. I visited the clinic in Panama before we chose them - it was very clean and professional.

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        • #5
          could you please tell me whats the cost ...how much would the approximate total , including the traveling and living expensive etc ?

          I ll read his blog and about the treatment. I wish him best of luck and hope he gets a miraculous cure!

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          • #6
            I would also be interested in knowing the approximate cost.
            www.adventuresofcolinandheather.blogspot.com !

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            • #7
              Originally posted by rahilka View Post
              I'll be accompanying my brother, a C3-C5 quad, to Panama City, Panama, for stem cell treatment at the Stem Cell Institute there. We'll be in Panama from Feb 4 - March 11. I know this is a subject a lot of you are interested in, and can be a difficult one to find good information on, so I invite any of you to follow along on his blog to learn more about the treatment and his results - http://danielleonard.weebly.com/ (most blog entries so far are about our fundraising efforts, but I'll start updating it with descriptions of the treatment as soon as we get to Panama). I'm also happy to answer any questions anyone has about how we chose Panama, fundraising, the travel experience, etc. - just email me at rahilka @ yahoo.com.

              Feel free to comment here in this forum, obviously, but please - if you don't agree with our decision to try this, go ahead and say so, but please keep the hating to a minimum. We realize it's experimental, and we want to try it anyway. I promise to be as unbiased as possible in my reporting of his results, to try to help anyone else who's considering doing this.
              I take it you didnt watch the 60 minutes piece on fraudulent drs selling unproven even dangerous "stem cell treatments". There arent any proven stem cell treatments for sci anywhere in the world. There are now many respected drs and or labs doing legit clinical trials throughout the world.

              Its sad to see you and your brother falling for these shysters and there claims. They are taking advantage of your desperation. JMO.

              He aint heavy, he's my brother.

              I totally respect how much you obviously care for your brother and wish you the best of luck. I hope you and your brother find what we all want, a treatment that'll help us or even cure us.
              "I'm manic as hell-
              But I'm goin' strong-
              Left my meds on the sink again-
              My head will be racing by lunchtime"

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

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              • #8
                In the information packet they sent us before we made our appointment, it said the cost of the treatment was approximately $35K. However, our appointment confirmation email said the actual cost is $30,750 - I assume that includes everything we have to pay them for, but I'll let you guys know if the number changes when we get there. We are renting a fully accessible apartment for $3K/month, and besides that, it's just plane tickets and food and other miscellaneous expenses - all in, I'm estimating it'll come out around $40K. My family is paying for a big chunk of it ourselves, and we raised ~$15K in fundraising efforts over the last several months.

                If we have good results this time around, we hope to do this again - their best results have been with patients who return 2-4 times. Follow up treatments are only two weeks, rather than four weeks, and you get a 25% discount for being a previous patient, so follow up treatments should be significantly less expensive.

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                • #9
                  Times two. Save your money for something proven down the road.
                  Originally posted by ineedmyelin View Post
                  I take it you didnt watch the 60 minutes piece on fraudulent drs selling unproven even dangerous "stem cell treatments". There arent any proven stem cell treatments for sci anywhere in the world. There are now many respected drs and or labs doing legit clinical trials throughout the world.

                  Its sad to see you and your brother falling for these shysters and there claims. They are taking advantage of your desperation. JMO.

                  He aint heavy, he's my brother.

                  I totally respect how much you obviously care for your brother and wish you the best of luck. I hope you and your brother find what we all want, a treatment that'll help us or even cure us.
                  Please donate a dollar a day at http://justadollarplease.org.
                  Copy and paste this message to the bottom of your signature.

                  Thanks!

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                  • #10
                    Can some people please lend their thoughts?

                    I tend to be skeptical of any injection method except directly into the injury site, or really close to it.... Are those thoughts warranted?
                    "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

                    Comment


                    • #11
                      They want you to keep coming back for more "treatments" until they've drained your family's bank account.

                      Please watch the 60 minute segment on stem cells.


                      Originally posted by rahilka View Post
                      In the information packet they sent us before we made our appointment, it said the cost of the treatment was approximately $35K. However, our appointment confirmation email said the actual cost is $30,750 - I assume that includes everything we have to pay them for, but I'll let you guys know if the number changes when we get there. We are renting a fully accessible apartment for $3K/month, and besides that, it's just plane tickets and food and other miscellaneous expenses - all in, I'm estimating it'll come out around $40K. My family is paying for a big chunk of it ourselves, and we raised ~$15K in fundraising efforts over the last several months.

                      If we have good results this time around, we hope to do this again - their best results have been with patients who return 2-4 times. Follow up treatments are only two weeks, rather than four weeks, and you get a 25% discount for being a previous patient, so follow up treatments should be significantly less expensive.
                      Please donate a dollar a day at http://justadollarplease.org.
                      Copy and paste this message to the bottom of your signature.

                      Thanks!

                      Comment


                      • #12
                        @ineedmyelin - I am familiar with the 60 minutes story that you're referring to. I was very disappointed in how one-sided it was, and I have read that it was paid for by Pfizer (though I haven't verified that).

                        The 60 Minutes story did not address the Stem Cell Institute in Panama, and many of the issues they raised (eg., the stem cells not being "alive"), do not apply to the clinic we've chosen.

                        I definitely would not say that all experimental stem cell treatments out there are worth it, or that all of the doctors doing this are ethical. But I think they unfairly portrayed ALL experimental stem cell treatments as worthless, which is just not true. If you look at online comments on the CBS site for this piece (http://www.cbsnews.com/8601-500251_1...eId=58&blogId=), there are many comments from people who have had positive experiences with stem cell treatments, and were also disappointed to see them all portrayed so negatively by 60 Minutes. The fact of the matter is, while there's no true cure, and there's nothing that can be guaranteed to work for everyone, there are treatments out there that are having positive benefits for some people - and we're willing to take the risk, in case this particular treatment has some type of positive benefits for my brother. I'd love to get him treatment that has been scientifically proven and isn't as much of a risk - but we're not willing to wait another 10-15 years, and just because it's not scientifically proven doesn't make it worthless.

                        Anyway, certainly no hard feelings against you for voicing your opinion - I'm going into this with an open mind, and again, I'll update his blog regularly so you can all see for yourselves whether the treatment is having any effect.

                        Comment


                        • #13
                          For those who are interested, this is an interesting paper written about one of their patients and his results - http://www.intarchmed.com/content/pd...-7682-3-30.pdf. Some of you may have read it already. It's only a case report about one patient, not a full double blind study that we'd all like to see - but still interesting, and it explains a lot of the science behind their technique, if you can slog through it.

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                          • #14
                            If your family can afford it rahilka, and aren't worried about any harm that may be caused to Daniel, then I wish your brother and your family the best of luck.

                            This is on your brother's blog. What does it mean exactly? I've not heard of any such thing.
                            They even receive frequent patient referrals from the University of Miami, which is considered a world leader in neurological injury research.
                            It surely sucks for Daniel to be in a nursing home. Have you checked with other SCI people/orgs in TN about programs to help him be able to live in his own place with aides coming in to help him deal with ADLs?

                            I'm sorry for your family's struggle. I would at least PM Wise Young and ask him what he thinks.
                            Please donate a dollar a day at http://justadollarplease.org.
                            Copy and paste this message to the bottom of your signature.

                            Thanks!

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                            • #15
                              @RDF - You're familiar with the University of Miami and their SCI research, right? They have the Miami Project there, and their hospital. When I was in Panama, the people I talked to at the Stem Cell Institute told me that the University of Miami (they didn't specify exactly who, and I didn't ask) has referred SCI patients to them. Granted, I have not contacted the University of Miami to verify that.

                              The nursing home really isn't ideal - but he lives in a fairly small town, so there aren't a lot of resources available. There is a new state program that may provide funding for him to live independently and have a caregiver come in, and we're looking into that now. Obviously we're hoping for some benefits from this therapy that will help him be able to be more independent.

                              I'm pretty sure I know what Wise Young would say - I think he's a really smart guy, but everything I've read from him has been pretty down on experimental therapies. Not that I'm not open to that opinion - just that I've heard plenty of strong opinions on both sides, and at this point, we're determined to try it.

                              Thanks for the well wishes! Hope you follow the blog!

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