21 replies to this topic

[RIL]

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.

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.

[edlee]

Good luck RIL,,, I'm afraid that you and your brother are going to need it. This is the same company that got thrown out of Costa Rica,,, tho they say in their press releases that they made the move "voluntarily".

How long has your brother had his SCI? Is he complete or incomplete? There are so many criteria for judging the results from these "foreign exchange" medical trips. I am,, as always,, hopeful,,, but also sceptical.

I am glad to hear that you have been funded by fundraising,,, as many have depleted their own bank accounts,, and those of their relatives,, for such treatments in China, Portugal, India, Mexico,, and now Panama. I will be reading your blog regularly.
ed

[RIL]

Yes, they did have to leave Costa Rica - but that was simply because the laws in Costa Rica don't allow this type of experimental treatment to be administered on humans - the Stem Cell Institute was not singled out.

He's had his SCI for 6 years, and he's incomplete. He just had ASIA testing done a few weeks ago, and I will post those scores on his blog when I get them, so we can compare later. He works with a physical therapist and also with a personal trainer at a gym, so I am counting on them as well to help provide professional opinions on any changes they see.

It's undoubtedly a risk, and I'll be the first person to admit it if it turns out to be a waste of money. But I do believe some people (not all - but some) have had positive benefits from stem cell therapy, and I'm hoping he'll be one of them.

[Tinbasher]

"the laws in Costa Rica don't allow this type of experimental treatment to be administered on humans "


Hmmmmmmm?

Good luck.


Tin

[edlee]

Thank you for your answers. You must have been on site when I posted. I just finished reading your blog,, came back,, and there you were.

I'm glad to hear that Dan is going to a gym to work out. Keeping what you've got is every bit as important as getting more. I've been pretty lax on that, myself.

You guys are leaving in about two weeks, huh? I hope you all get to enjoy yourselves a bit while you are there.
ed

[RIL]

@Tinbasher - Oh, it's totally experimental. I freely admit that. But health risks to otherwise healthy patients from this treatment are rare, so the main risk we're taking is that we lose all our money - plus the time/effort we put into this. Which would definitely suck - but we're willing to take that risk. And, that's why I want to share our experiences, whatever they end up being, with the broader SCI community - because I know other people out there have considered doing this, and I want to help them understand how the risks/rewards worked out for us.

@Ed - I'd be lying if I said Daniel has been as good about working with his trainer for the last six years as he has in the last six months. Getting ready for this trip has definitely motivated him. And even if the stem cells don't work, he's inevitably going to come back stronger just from doing intense physical therapy five days a week (right now he only goes twice a week). And he'll stay motivated for at least a few months after coming back - so just that is all worth something.

[Tinbasher]

"health risks to otherwise healthy patients from this treatment are rare"

How do we know that? There hasn't been enough proper research yet.

Having seen the result of Graft Versus Host Disease in bone marrow stem cell transplants I would be cautious. But every great leap requires pioneers so when i say good luck i mean it.

[mellowgator]

i read on your brother's blog where the university of miami is referring patients. can i ask who is referring from there? my brother-n-law is mark buonoconti and his family started the miami project after his injury. i asked him about this clinic and he's not aware of it but he asked me to find out who is referring patients to see if this is for real.

i deep down truly hope this clinic will cure your brother. i look forward to hearing about your experience.


mellowgator

[Stand]

I was looking into something like this and shared it with my physical therapist and SCI Dr. They told me if I go out of the country to receive stem cell treatments and somewhere down the road the United States approves this practice as well, the U.S. Physicians will not touch you. This is because I would be receiving something from another country, which more than likely they would not have records of, and mixing/adding additional stem cells could be lethal. I personally would rather wait but to each his own. Make sure your brother knows this or at least talks to someone to make sure the information I was given is correct. Maybe he doesn't care, that's his prerogative. I'm just telling you because who knows what the future holds here in the United States. Hopefully great things! Either way, good luck with what ever your family decide to do! Anxious to hear the results.

Edited by Stand117711, 23 January 2012 - 06:17 AM.

[A trophy guy]

Stand117711, on 23 January 2012 - 06:15 AM, said:

I was looking into something like this and shared it with my physical therapist and SCI Dr. They told me if I go out of the country to receive stem cell treatments and somewhere down the road the United States approves this practice as well, the U.S. Physicians will not touch you. This is because I would be receiving something from another country, which more than likely they would not have records of, and mixing/adding additional stem cells could be lethal. I personally would rather wait but to each his own. Make sure your brother knows this or at least talks to someone to make sure the information I was given is correct. Maybe he doesn't care, that's his prerogative. I'm just telling you because who knows what the future holds here in the United States. Hopefully great things! Either way, good luck with what ever your family decide to do! Anxious to hear the results.

Many people who choose to leave the country to seek out and undergo these experimental, unproven treatments do so, in part, because time is of the essence. The longer your body is paralyzed; with all the accompanying physical deterioration that goes along with that (atrophy, bone loss, etc.), the smaller the chance is of ever being able to make any sort of transformative recovery. So even if a cure is found, say 5-10 years from today (and with all the political, religious and social roadblocks currently in the way, that is a very friendly estimate), I know I wouldn't be able to benefit from it. Simply because my lower body has deteriorated too much to ever be able to support my upper body and function on two legs.

I'm not recommending anyone go out of the country or do anything experimental; that is not what I'm saying. All I'm saying here is why, for those who do want to explore stem-cell treatments, time is an important factor.

[greybeard]

A trophy guy, on 23 January 2012 - 06:46 AM, said:

Many people who choose to leave the country to seek out and undergo these experimental, unproven treatments do so, in part, because time is of the essence.

.....And because they have the money.

[Muskie]

Good Luck RIL, please keep your blog up to date that we may be able to check in on a daily basis. I also found the Stem Cell Institute's website on Friday and was starting to research them. I was also told about if anything comes along in the US my son would not be a candidate. Also how many followups did they say you would need? I know the initial cost is about 31K without travel expenses, followed by 12-15 K for followups. I would empty my bank accounts as well to give my son his life back. Again best of luck to your brother I pray that your treatment gets the results you are hoping for

[Tetracyclone]

Go to Cure Care forums and read everything Wise Young has written about stem cell treatments and potential.

It will take you a week to wade through it but then you will have a complete education.

Beike, in China, still offers the most for your money but there is still no safe delivery method for getting the stem cells to the injury site if it is in the neck.

That said, placebo effect can and does work miracles. And some folks have seen convincing results from the treatments now in use.

[RIL]

@Mellowgater - that's an excellent question, and I don't have an answer for you. When I was there in Panama visiting the clinic, they told me that some of their patients were referred to them by the University of Miami - but there were so many other things we were talking about that I didn't ask for more specifics on that statement. I'm going to try to ask their doctors more about that when I'm there - I'll let you know what I learn.

@Stand - I personally think it's too early to say who's going to be eligible for treatment when the US gets going with this - we're so many years away, I don't think anyone can say for sure what the situation will be by that time. And A Trophy Guy is right - if this could help my brother maintain muscle mass/function while we wait for a real cure, then we want to do it now - his muscles aren't improving with time otherwise, that's for sure. But, yeah, it's another risk we're taking.

@Muskie - they don't specify a certain number of follow ups that are needed, but they do say that the people who have had the best results have been there 2-4 times total. Definitely keep an eye on the blog once we get there, and feel free to email me privately if you have more questions. It's for people like you and your son that I will try to be as complete and honest/unbiased as possible in my reporting of our experiences and results.

[RIL]

Also, for those who suggested reading up on what Wise Young has written - turns out someone has emailed him about this clinic specifically. For those who are interested, here's a link to Dr. Young's response, which I think is pretty fair: http://sci.rutgers.e...ad.php?t=140833

[edlee]

It was good that Dr. Wise wrote about this clinic,, as he has brought up some of the things you should look out for. He is so much better equipped to do so than any of us.

It may be my natural skepticism,, but I would ask more questions concerning the certifications they claim,, like,, what is the certifying body,, and how you could contact THEM.. If these guys are on the level,, they shouldn't mind at all that you ask,, in fact,, should be happy that you are so thorough.

I am rally looking forward to your continued presence, here,, and on you blog,, which I have bookmarked.
ed

[FlyPelicanFly]

mellowgator, on 23 January 2012 - 02:05 AM, said:

i read on your brother's blog where the university of miami is referring patients. can i ask who is referring from there? my brother-n-law is mark buonoconti and his family started the miami project after his injury. i asked him about this clinic and he's not aware of it but he asked me to find out who is referring patients to see if this is for real.

i deep down truly hope this clinic will cure your brother. i look forward to hearing about your experience.


mellowgator

Mark Buonoconti should know about this "collaboration" between Medistem Panama and The Miami Project! It exists and he should know about it. Ask Dr Barth Green or Dr Dalton Dietrich about it.

[mellowgator]

FlyPelicanFly, on 26 January 2012 - 05:05 PM, said:

mellowgator, on 23 January 2012 - 02:05 AM, said:

i read on your brother's blog where the university of miami is referring patients. can i ask who is referring from there? my brother-n-law is mark buonoconti and his family started the miami project after his injury. i asked him about this clinic and he's not aware of it but he asked me to find out who is referring patients to see if this is for real.

i deep down truly hope this clinic will cure your brother. i look forward to hearing about your experience.


mellowgator

Mark Buonoconti should know about this "collaboration" between Medistem Panama and The Miami Project! It exists and he should know about it. Ask Dr Barth Green or Dr Dalton Dietrich about it.

hi fpf,

i copied and pasted this and sent it to marc. i'll let you know what he says.


mellowgator

[RIL]

FYI, I have posted Daniel's pre-treatment ASIA scores to his blog. As promised, we will eventually post post-treatment ASIA scores, as well. http://danielleonard...y.com/blog.html

We are on day 3 in Panama. I will post my impressions to the blog soon, but so far everyone is friendly and professional, all of the facilities are super clean, our apartment is fantastic, and the weather is beautiful. The main disappointment so far is the state of the sidewalks here - most of them don't have ramps to get on to the sidewalk, making it near impossible for an electric wheelchair user to go anywhere.

[Ted 303]

Hi, I can only echo what has been said already best of luck with everthing. dont built up too much hope, while staying very positive any extra improvement is a bonus.

Gud luck.

[RIL]

To follow up on a subject we had been discussing on here - Wise Young verified on the Care Cure forums that the Miami Project has indeed been referring patients to the Stem Cell Institute. Not that Wise is putting his stamp of approval on the SCI, by any means

[Muskie]

For anyone interested RIL keeps a very detailed blog on her brothers site