keraflex

[longhoc]

Hi Liam

It's not just testimonials which are hard to come by (for any of the procedures mentioned in this thread); it's any sort of even faintly robust clinical trial data from well constructed studies. While anecdotal information certainly has its uses, it's no substitute for independent peer reviews of actual patient outcomes by qualified and experienced clinicians.

Not that I have any evidence one way or the other on this -- I'm trying to be optimistic and keep an open mind. I just wish that someone would publish something in one of the usual respected journals and allow the findings to be held up to proper scrutiny. Then we could all make an informed judgement.

Cheers

Chris

[Luciano]

Iwent to the doctor today. Left eye improve a lot from last week. Much more uniform without conus. Vision i reach 20-20 with glasses, at least its a conquer. Right eye now moved to the center and vision is not good now but im sure it will improve soon. Lets wait a little more. Doctor said the scars can take a while to leave. But just now i can see substancial improvment. The procedure could be good, but the pos surgery its too much for
Me. but i think the results can worth. Where is the other guy who did the keraflex too?

[liam82]

Hi Liam

It's not just testimonials which are hard to come by (for any of the procedures mentioned in this thread); it's any sort of even faintly robust clinical trial data from well constructed studies. While anecdotal information certainly has its uses, it's no substitute for independent peer reviews of actual patient outcomes by qualified and experienced clinicians.

Not that I have any evidence one way or the other on this -- I'm trying to be optimistic and keep an open mind. I just wish that someone would publish something in one of the usual respected journals and allow the findings to be held up to proper scrutiny. Then we could all make an informed judgement.

Cheers

Chris

Cheers for that. Yeah, its definitely wierd theres so little information on it. Like keraflex, it sounds like something that could be a real benefit to people with this condition- but theres so little information behind it.

[liam82]

Iwent to the doctor today. Left eye improve a lot from last week. Much more uniform without conus. Vision i reach 20-20 with glasses, at least its a conquer. Right eye now moved to the center and vision is not good now but im sure it will improve soon. Lets wait a little more. Doctor said the scars can take a while to leave. But just now i can see substancial improvment. The procedure could be good, but the pos surgery its too much for
Me. but i think the results can worth. Where is the other guy who did the keraflex too?

Hi there, im just wondering how your getting on with this now? Has it improved much?

Is there still just the one place in the uk offering this?

[spotix]

My 14 years old son had done avedro keraflex and avedro fast crosslinking last year on May by Dr. Paulig in Cottbus, Germany.
The result was bad. One month after crosslinking (done one month after keraflex) the keratokonus was kk staium 3, before the treatment he had kk stadium 2.
The crosslinking wasn't stable. I have aked two times avedro via web form, why the crosslinking didn't work but i never have got an answer.

For my son and me the keraflex-treatment was a big failure. Sorry about my bad english.

[Anne Klepacz]

Thank you for this feedback, though it's sad to hear that Keraflex hasn't worked for your son. Unfortunately there are never any 100% guarantees of success with any surgical procedure even when it isn't one that's new and experimental. So it's never easy weighing up the pros and cons of any intervention.
Anne

[spotix]

I think like you, that this treatment is in an experimental staus but the treatment costs a lot of money. I know from other patients in Germany where this treatment keraflex with avedrro fast crosslinking wasn't sucessful.

[drink]

hi sportix, did your son have keraflex done in both eyes or just the one?

Also why did they wait one month before having the crosslinking done? By the research and asking around i did, i found they usually do the crosslinking straight after or week later the keraflex treatment.

Due to your son being only 14, and probably in the early stages of keratoconus where it is the most aggressive in progressing, could that have an effect on the outcome?
Have you tried phoning and speaking to the doctor who has done your son's surgery?

[spotix]

Only one eye, the other eye had an classic stable crosslinking (no avedro fast crosslinking)

Dr. Paulig waited for one month because the distance vision (about + 9 dipt) after keraflex treatment in May 2011.

I don't think the age (or the one month waiting) of my son is the reason for the bad result, an other knowed german patient had similar bad results.

I often phoned to Dr. Paulig, but we had problems to cofide her. After Avedro Fast Crosslinking in June my son had a second
normal classic cross linking (dresdner protocol) by another dr. in germany. Since this time the bad result from keraflex/fast crosslinking was stable.

[drink]

Sounds like you guys have had a tough time. Hope it works out well for your son, and possibly as some have stated, sometimes after keraflex it takes longer for eye to heal and see better results, I hope thats the case with your son.