Community Chat

[cherry]

@LTT1there is research being done in this area. It holds promise. But I'm sure it was and is, tightly regulated, and controlled, unlike what was done in Fla

http://www.cnn.com/2016/03/07/health/using-stem-cells-to-cure-blindness/index.html

[pitdakota]

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@LTT1 wrote:

@cherry

As far as I have read, stem cell treatment has not been approved for medical use in humans.

A medical show on TV brought this fact to life as in a pretend TV world, the treatment cells had migrated to an unwanted location and formed a mass.

I had read this on the internet while doing some research for a family member.

I know this strand is certainly not advocating this treatment, just wanted to add my thoughts also.

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@LTT1. that is not exactly the case.  We collect cord blood from the umbilical cord of all babies these days and save that blood for possible stem cell transplants if that child develops certain blood disorders.  That is approved by the FDA. 

A good friend of ours had a major stroke several years ago and was left with quite a bit of motor deficit as well as some speech problems.  He had researched several options for treatment out there and asked me for my opinion.  I researched those options, but one thing I told him which I would tell anyone is that when a doctor is claiming to have great results from any type of new treatment....do a search for research publications from that doctor.

All doctors live to come up with a ground breaking treatment and if they are getting fabulous results....believe me....they will publish those results in a research article.  If you can't find any research articles on that treatment done by that doc, chances are it is just hype with no evidence to support the claims.  So any new fangled treatment that is worthy to be adopted by other physicians will have research published by the docs doing that treatment.   If not, walk away and be very leary.

[LTT1]

@Noel7

Love your tag line!

[ChynnaBlue]

Oh, no! It sounds like these clinics are as unregulated and poorly monitored as the plastic surgery clinics that cause so many problems in Florida. 

"The clinic’s method hasn’t been proven effective or tested for safety in people, said ophthalmologist Dr. Thomas Albini of the University of Miami. He and colleagues, who examined the women after their treatments at a Florida clinic, described the outcome in Thursday’s New England Journal of Medicine."

[Marp]

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@pitdakota wrote:

There is just so much false and/or confusing information out there.  This is very sad.  In this case, I think they play on the emotional aspect of individuals diagnosed with macular degeneration and the deteriorating eyesight associated with that diagnosis so that people want to try something without knowing the details.

Hopefully the bad press will help to cut down on the number of people going in for this type of treatment.

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@pitdakota, hi Pit.  You might find the linked preview of interest. Even in light of Florida's history of unauthorized procedures, underground providers and the desperation of patients publicity doesn't seem to make a dent in the problem.

http://www.nejm.org/doi/full/10.1056/NEJMoa1609583

[FUTURE]

This is not in any way casting judgment, but it is so perplexing to me that they would do both eyes at the same time.  That part just does not make sense. 

[Desertdi]

There is LEGITIMATE eye surgery for macular degeneration.   The recovery is difficult...........you need to lie face down on a special gizmo that has a space cut out for your face.....like a toilet seat......for approx a WEEK.    My cuz went thru this last year, and completely recovered her eyesight.   

[Drythe]

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@cherry wrote:

I didn't realize this type of treatment isn't regulated by the FDA

I will never get involved in anything that isn't regulated, it's far too dangerous

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@cherry

I see where you're coming from, BUT there are legitimate clinical trials for new, as yet un-proven drugs that do ultimately help many, many people.

I've been told about 3 trials by 2 of my long-term MD's who OKed me to participate if I wanted to.  I don't know about the clinical details of this particular program / study / trial, and it is not something anyone would do on a whim of course.

In all three of the clinical trials in which I participated the drugs are now on the market with one offering amazing results for many.  In that particular study I was one of only 5 "controls" nationwide.

Having a chronic, long-term, degenerative disease helped my decision to participate, you know, perhaps somewhere in the world people are taking part in a study that will help some of us here.

I was not compensated in any way.  I know you personally would never ask that, but just in case someone might be thinking it.

[Silver Lining]

 I read that these three women were in their 70s and 80s. One became blind the day after the procedure and the other two are now legally blind. So terribly heartbreaking. I guess they were desperate to try to save their vision after being diagnosed with macular degeneration. What was done to them makes me sick, taking advantage of these women and blinding them in the process. No amount of money can ever compensate them.

[KingstonsMom]

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@Desertdi wrote:

There is LEGITIMATE eye surgery for macular degeneration.   The recovery is difficult...........you need to lie face down on a special gizmo that has a space cut out for your face.....like a toilet seat......for approx a WEEK.    My cuz went thru this last year, and completely recovered her eyesight.   

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@Desertdi

I also have a friend who went through the 'legitimate' surgery and you're right, recovery isn't easy, but worth it in the long run!