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Post Info TOPIC: EPI ON OR OFF?


Veteran Member

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Posts: 45
Date: Sat Apr 28 1:12 PM, 2007
RE: EPI ON OR OFF?
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Thanks Quintrix,

You do a great job at pushing out the latest information on this site.

I  think we all look forward to a day when KC can be diagnosed and halted early enough so that people don't have to go through all the years and the pain that they do now. It breaks my heart to hear about how some people have struggled with limited vision and painful contacts for so long.

For my son, many options remain open. If his KC progresses, he may have to choose to try cross linking again, and may opt for epi off. He had a real concern about moving from the least invasive procedures first to the more invasive ones.

Our FDA has pushed so many innovations into the marketplace and then backtracked that I just can't place much faith in it anymore:

Vioxx, the arthritis drug (that I took while it was FDA-approved!) is now off the market because it is killing people

Hormone replacement therapy-how many times have we been through that debate over here: it's safe. It causes cancer, It protects against cardiovascular disease, no it doesn't. ?

Drug coated stents for cardiovascular disease-touted a few years ago as an advance over uncoated stents, now the FDA says they could be harmful.

Antidepressant medications: first deemed safe, now prescribed with a warning for young people, now deemed safe again by the FDA.

Now they admit that the tainted Chinese grain MAY have gotten into the human food supply over here, as well as the pet food supply. Why did the FDA allow this to happen?

Can you see how all this damages their credibility?  As I said, you are very lucky if your regulatory agency over there doesn't put you through the same ups and downs!



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Joanne in NY


Phase Two

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Posts: 482
Date: Sat Apr 28 2:32 PM, 2007
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There are scares over here which is reported in the news... more about food from abroad, sometimes its over exaggerated by the media to sell more papers. There was this big thing In the late 1980s; the then junior Conservative heath minister Edwina Curry was forced out of the government after warning of high salmonella contamination in eggs.

However, no one eats eggs that are not cooked (well no one I know!) so there is no risk really (or so low its not even worth thinking about) as by cooking eggs all is well and the salmonella is killed during the cooking of the egg. A lot of eggs do have bugs that are not good for you, just like eating raw chicken for example. All this was blown out of proposition and whipped up by the tabloids.

The thing is over here is Europe is made up of some 27 different countries (and more will be joining the European Union, even places out side is being concidered like Turkey and even Russia, as some of thereland touches in to europe), all with a health bugdet, all looking at health issues like KC, all have there own elected government, a president etc. So when Europe approves something it means a hell off a lot. There are
494 million people in Europe and its not a country but a continent.

You got to also remember where to draw the line where something is safe is infinate and up for judgement... laser for "normal" people has no long term results of 20 years... but many still do it... and laser has no regulation like with medicine as a whole. Infact there is no long term results for any "treatment" to the eye that has lasted by that amount of time, even RK has the 20 year results... and they where good (for "normals")... but there are not the long term results in large numbers at old age, so no one knows what will happen at old age for sure... this is why we have to have teamwork, stick together, and talk...




-- Edited by QuintriX at 14:42, 2007-04-28

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Posts: 35
Date: Sat Apr 28 3:44 PM, 2007
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Hello Everyone,

I am trying to decide weather to do the C3r in Germany or Beverly Hills.  I would love to do it in Beverly Hills because I LIVE THERE.  I already flew to ITaly and all across north america for my PTK surgery and I really can't afford to be flying out again and again.  I received a big email today from Dr. Boxer Wachlers' clinic.  I want to post it hear because they are claiming some positive things with their approach.  Any comments would be much appreciated.


Please let me know if I can be of further assistance.   We do C3-R
differently then the doctors in Germany, and many other doctors subsequently
have started using our methods (in Greece, Italy etc).. While it is true
that we do not remove the epithelium, with our "epi on" technique, the
epithelial tight junctions (which is the barrier in the epithelium that
prevents large molecules from penetrating the epithelium) are loosened and
opened with a solution soaked sponge and topical anesthetic soaked sponge
that is routinely wiped across the cornea during the treatment.  This
creates a porous surface (loosened and opened tight junctions), which allows
the riboflavin to penetrate to the proper depth for effect. Keep in mind, if
riboflavin did not penetrate, then, by definition, the treatment would not
have any effect.  Since we have observed results almost identical to the
epithelial removal technique, it indicates riboflavin penetrates with our
technique, and crosslinking occurs.  Other physicians around the world have
adopted the "Epithelial Intact" C3-R technique with consistent effectiveness
too.



The most recent article that I attached shows the effectiveness of our
technique (note in the Methods section, it cites that riboflavin is visible
in the cornea). I know one of your concerns was finding published research,
so I trust you'll find this publication helpful. There are some other
articles you may find interesting as well.



Our website also cites scientific presentations and results.



Many patients are  concerned about the UV light injuring the retina or
endothelium.  The energy level at the retina and endothelium is below the
level that causes damage - the clinical results support that as well.  With
either technique, though, we are not aware of any reports of retinal or
endothelial damage worldwide.



Some patients have asked if Dr. Boxer Wachler would be interested in
performing C3-R with epithelial removal.  Years ago, he evaluated C3-R both
with and without epithelium and he concluded that  there is no advantage to
removing the epithelium.  With epithelium removal, patients do experience a
lot of discomfort (and pain often) along with a delay in their recovery of
vision and ability to function while the epithelium heals over the course of
4-7 days.



There are also reports of extended delayed epithelial closure over 2 weeks
and haze formation (but that is not common, fortunately).  Because of these
unnecessary induced discomforts and risks coupled with that, there is no
difference in results with epi on vs. epi off, he is not comfortable
performing C3-R with epithelium removal.  There is no benefit, but there is
some risk. 


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Simon


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Posts: 15
Date: Sat Apr 28 3:44 PM, 2007
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Wow! This thread is really been hopping! I haven't had any type of cross-linking done, but Dr. Boxer-Wachler did remove my upper intacs segment. I will probably have his C3-R treatment done, eventually. I opted not to undertake that when I was there. I'm fairly certain that the patient that had the non-invasive cross-linking done and it failed had already progressed to a stage where he already needed a transplant. The main objective of C3-R is to stop progression. Hopefully, early. The later it is done, the less likely it is to work. How does epi on vs. epi off compare? No one really knows. There's not enough long term term data. The epi off method has the longer term data. If you are living in the L.A. area and a visit to Dr. Boxer-Wachler is convenient, I would at least go and visit him. He isn't going to try to push anything on you. I was skeptical about his method, but after sitting and talking with him I felt very comfortable with what he had to say. I've decided that I'm going to do whatever he recommends. Remember, he's a doctor. A highly-educated doctor who has done a lot of research. No one posting on here can claim that. If you go and speak with him and you aren't comfortable with what he has to say, don't have him do anything. The internet arguing is ridiculous, and I've really grown tired of it. You can do research for as long as you like. There's a lot of it out there. In the end it's your decision. I think the doctor you select is very important. Dr. Boxer-Wachler was confident he could improve my vision and was optimistic about everything he could do to help. That's more than my previous doctors could say. The "this might or might not work", "we can't predict anything" is just BS in my opinion. Dr. Boxer-Wachler is experienced enough to be able to give you some kind of expectation. If I have time, I may try to read more on this thread and respond later. I don't have the time, right now.

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Phase Two

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Posts: 482
Date: Sat Apr 28 5:32 PM, 2007
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The argument you put up is subjective... anyone can say that... all the Drs doing the orginal method remember are Dr's too... infact the medical professional's who put it together are scientists.

We will see which one get accepted over there with a rubber stamp from the FDA... and you live in a democracy... if you don't like the FDA... well change it!!

Its the same old half baked arguments being put up again and again... go and do the treatment, you are hoping, not looking at it logically... the proof of the pudding is in the eating, so do the treatment if you have no doubts and start a new topic, this one has become a merry-go-round.



-- Edited by QuintriX at 21:11, 2007-04-28

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Member

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Posts: 15
Date: Sat Apr 28 9:40 PM, 2007
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Dr. Boxer-Wachler has improved/saved alot of KC patients' vision. You don't have to look far to find success stories.

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Phase Two

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Posts: 482
Date: Sat Apr 28 10:44 PM, 2007
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That is the case for all good eye Dr's, it's not an exclusive thing or anything new.

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Veteran Member

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Posts: 45
Date: Mon May 21 2:38 PM, 2007
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Just found a very interesting published comparison of epi on vs. epi off crosslinking results. It was a study done in Italy, apparently the subject will be discussed at length at a conference in Italy next month. The dialog box for link insertion isn't working for me at the moment, so here is the full url.  I will edit and create a link later.

http://www.eyeworld.org/article.php?sid=3797


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Joanne in NY
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