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Post Info TOPIC: Is Cross Linking FDA approved in US?


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Date: Sun Apr 20 2:52 AM, 2014
Is Cross Linking FDA approved in US?
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I'm just starting to research, so forgive my ignorance...

I've just learned (now that I'm legally blind), that my Ophthalmologist has led me astray in many ways the past 7 years, so I'm confused about a lot of things.  One being - I was told Cross Linking isn't FDA approved, so it can't legally be done in the US??  I know Dr. Brian Boxer Wachler did Cross Linking on Holcomb the US Bobsledder years ago.  There are also lots of YouTube videos of various Dr.'s doing it.  Can anyone explain whether it is or isn't approved and how Dr.'s are doing it, if it isn't.
Thank you very much for any input.



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Executive

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Date: Mon Apr 21 5:46 AM, 2014
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Hi,

Its not approved over there just yet. Dr B is doing something which is controversial in if it works as much as the original way but its less invasive, but less effective, it might be enough though. To be sure, patients seek out the proven method.

Many have and are traveling abroad to get the proven method done.

Sorry to hear that you was not told by your eye Dr on Crosslinking. But its hard for them to refer abroad. Youre story ius typical, so don't feel your alone. Some patients voted with their feet once they first heard there was a treatment for progression.

You may still be able to regain your vision...research...and research hard, find a Dr you can trust and find out what may be suitable for your patient case.

Wayne



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Date: Tue Apr 22 2:37 PM, 2014
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There are often trials and studies going on, and that is how doctors get to perform things like crosslinking for short periods of time before it's officially approved.

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Date: Wed Jun 18 6:44 AM, 2014
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Thank you both very much!!

So, worldwide, what doctors would you recommend? It's so overwhelming to look worldwide and half the time the information i find is out of date. Plus, I really don't know which surgery would be best for me, and I don't know how to find out without traveling first - which I can't afford to travel for just an assessment.

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Date: Wed Jun 18 3:53 PM, 2014
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In North America, the most highly respected place to get CXL or T-PRK done is probably the Bochner institute in Toronto, and possibly Dr. Stein there is the most well known doctor for it. They literally wrote the textbook for the excimer laser that they use.

It's where I had mine done (but I live pretty close to Toronto). I have a blog thread on this forum of how mine has went (and is going), so you can check it out. I felt I was treated well there, and everything was very professional, but as I haven't had eye surgery anywhere else, I can't exactly compare.

As far as assessments go, there are places where you can get topographical scans done with a Pentacam (any contact lens specialist should be able to do it), and I believe there are doctors that you could send these results to and get some kind of preliminary assessment without any travel. You'd just have to spend the fee (around $30 where I live) for the scan.



-- Edited by jgcpalmer on Wednesday 18th of June 2014 03:53:45 PM

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Date: Wed Jun 18 4:03 PM, 2014
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Yes they are a good clinic too.

You may want to also email Wellington eye clinic in Dublin Ireland, they are converse with all the treatments, they pioneered more of them in Europe, where most of them began, and do have Americans traveling over to them.

Send scans you have or find out more by sending an email to:

info@wellingtoneyeclinic.com

They was most helpful when I contacted them.

All the best

Remo

 



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Date: Wed Jun 18 10:14 PM, 2014
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Thank you! Thank you! Thank you!! Yesterday I sent my records (with graphs) to Boxer Wachler in CA & Guilani in FL. When I get home, I'll send them to the Dr.'s/offices you guys mentioned, as well. In Atlanta it seems the Ophthalmologists just want to treat you with whatever they specialize in, rather than what's best for my specific case. I hope a wide, international mix of assessments will provide the treatment plan best for me. I greatly appreciate the recommendations!! It's an overwhelming process, isn't it.

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Date: Thu Jun 19 3:33 AM, 2014
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I too live in the atlanta area. Doctors here are very ignorant and egotistical. And yes they only treat and care about their specialty. And Dr . Stunting at Woolfson eye clinic ( the only regional CXL trial study doc) is very jealous of the European doctors advanced knowledge and practice. I read a statement he made that he does not refer pts to out of the country docs and I even met one of his techs who told me she has KC but that he can't help her because her corneas are too thin. She didn't even know about the advances elaewhere!! He is not patient centered in the least and I do not recommend him I had TPRK + CXL in November at Wellington eye clinic. Can't say enough good about them and Dr. Cummings. However, it is a huge struggle here to get ppl to properly fit me with a current & good Rx. Dr. W. Barry Lee is supposedly going to start CXL study. But I'm not sure of any details. He is at Eye consultants of atlanta in their Cumberland location. I do not have personal experience with him but several people tell me he is a good ophthalmologist/corneal expert. I do know that he has not been involved with CXL before but is rumored to have plans to do so. Also, consider that the studies are restricted to what they/FDA want to practice or find out. I have researched and it seems the US studies are repeating studies that Europe did years ago that were found to not be the best procedure. European docs have perfected it and practice it routinely. They also have experience with the thinner corneas My right cornea would not have passed for a US trial. It was a huge sacrifice in time and money to go to Dublin but it was necessary. And despite my struggles here in the US to get good aftercare, each scan since has demonstrated that the CXL is working. Good luck and I hope this regional info I've provided helps you wade thru your research faster in order for you to get the help you need.

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