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Thread: Stem Cell Institute in Panama

  1. #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.

  2. #62
    Quote 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

  3. #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; 02-12-2012 at 07:53 PM. Reason: punctuation

  4. #64
    Quote 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.

  5. #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.

  6. #66
    Senior Member lunasicc42's Avatar
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  7. #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.

  8. #68
    Quote 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.

  9. #69
    Quote 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?

  10. #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?

    Quote 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.

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