mr Marc i noticed that you wrote Grafts in your profile
does this mean you do keraflex on grafted cornea
keraflex
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Marctec
- Contributor
- Posts: 12
- Joined: Thu 14 Jul 2011 7:40 pm
- Keratoconus: Yes, I have KC
- Vision: Contact lenses
Re: keraflex
Hi jhon, oh sorry I was mistaken, no grafts in my eyes.
Bad xperience in my case....
Bad xperience in my case....
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metallic201001
- Contributor
- Posts: 22
- Joined: Sat 14 May 2011 9:18 am
- Keratoconus: Yes, I have KC
- Vision: Contact lenses
Re: keraflex
Did You talk with your doctor? What does he say?
Did he inform you about the risks? Have you taken a Pentacam-Topography?
What show the data?
Maybe there is a temporary scar? But why was your vision better before? Did the doctor test you when it is the right point to to the crosslinking?
I guess you were at 20-20 Vision? Maybe you should have a check up at Wellington Eye Clinic in Dublin. I was there with a another OP. Really experts there.
Best regards and I hope your eyes will get better soon.
Andi
Did he inform you about the risks? Have you taken a Pentacam-Topography?
What show the data?
Maybe there is a temporary scar? But why was your vision better before? Did the doctor test you when it is the right point to to the crosslinking?
I guess you were at 20-20 Vision? Maybe you should have a check up at Wellington Eye Clinic in Dublin. I was there with a another OP. Really experts there.
Best regards and I hope your eyes will get better soon.
Andi
-
Lynn White
- Optometrist
- Posts: 1398
- Joined: Sat 12 Mar 2005 8:00 pm
- Location: Leighton Buzzard
Re: keraflex
I'd like to make a few comments:
The KeraFlex procedure is in two parts: The KeraFlex microwave procedure and CXL OR acccelerated CXL, called KXL. The KeraFlex is intended to reshape the cornea and the cross linking is intended to freeze this reshaping into place and hold it there. In this respect, it is rather similar to having INTACS inserted with CXL done afterwards to hold the shape. The difference is, KeraFlex is not reversible whilst INTACs can be removed at later date if necessary.
CXL or KXL procedures involve removal of the epithelial layer, which accounts for the pain for the first day or two. This affects some people more than others. CXL with epi off also causes significant corneal shape fluctuation in the first few weeks. This can cause your vision to get better and/or WORSE in the weeks and months after the procedure. This is without the effects of KeraFlex added in to the mix, which are INTENDED to reshape your cornea and so will cause vision fluctations as it is taking effect.. The vision Marc is experiencing at the moment may well be nothing more than a temporary change in refraction or it may be due to other causes. However, none of us can know what is happening - only his surgeon will know that.
What no-one can do is judge whether this, or any other procedure, is giving good OR bad results from reports made on a forum such as this. It worries me equally when people get really hopeful when they see excited reports about a new procedure or when people get upset at bad reports.
As I have said before on this thread, KeraFlex is very similar to CK (Conductive Keratoplasty). Experience over the years has shown that some people get reasonably long lasting effects from CK (maybe a small percentage of the effect is present at ten years) , for the majority, it wears off in a couple of years and for a minority, it wears off very quickly indeed. This "wearing off effect" is being tackled by cross linking but it may be of interest that other remoulding methods combined with CXL also show a wearing off problem. Trials are still ongoing with Ortho K and CXL and some studies show that even with CXL, the reshaping effect can wear off within a month or so. http://www.ortho-k.it/documents/Calossi%20ESCRS%202008.pdf.
The truth is that CXL continues its "work" over a long period of time. I have followed people up after CXL for several years now and found that improvements continue to occur after 3 or 4 years. In one patient, who had CXL in one eye only. and wore soft lenses post op, the CXL cornea improved in shape dramatically whilst the non CXL eye progressed. There was definitely some moulding effect going on from the soft lenses, but it only had a significant effect in the eye with CXL. I have seen this in other patients as well, but in some cases, when lens wear was discontinued, the corneal shape went "off" again.
We have all much to learn about reshaping and CXL but the one thing I am sure of, is that none of this is an instant fix. If anyone is thinking you simply walk into a surgery, get a procedure done and then that's it, you are totally fixed for several years at least, then this is simply not going to happen. This is because epi OFF CXL is not instant and it does not confer stability. While its doing its work, corneal shape changes can mean your vision can get worse as well as better for periods of time.
Epi ON CXL is less invasive and does not cause as much fluctuation but getting the Riboflavin through the epithelium effectively is the challenge. Work is still ongoing in this area.
Monitoring, comparing and evaluating these two methods takes time - years in fact. As does the overall effect of KeraFlex and KXL. Some people here have been quoting that its a fix for ten years. Well so it might, but we wont know for sure until AFTER TEN YEARS, will we? For any new procedure such as this, experts can only make calculated guesses drawn from past experiences. Much of the CK work has been done on normal corneas. Keratoconic corneas have different metabolisms and each eye can behave in a unique fashion - even with the same person.
New procedures like this are very exciting for all of us. However, one has to remember that with any new procedure, experience is gained from the people who have it done first. Improvements are developed from failures. No new procedure or technology jumps into the world fully developed.
If you, as a patient, jump on the bandwagon immediately, then you have to face the risks that the long term effects are completely unknown. Guessed at yes, but factually unknown. If you wait until these are known, then you may well have missed the window of opportunity to have it done at all.
All my work is done with keratoconic/irregular cornea patients and I do fully understand the emotional turmoil that goes with this condition. Everyone hopes for a miracle cure. KeraFlex may be the "one" but we do not know this yet. By its very nature, and that of CXL/KXL, it cannot guarantee everyone instant, stable vision, so if you do go ahead with this, you have to consider the effects on work and family life if there are long periods where you cannot see well enough to drive or work.
I hope this post is seen as a voice of caution. I am not condemning KeraFlex. No-one would be happier than I if it proved to be the answer to KC we have all been waiting for. The truth is, we will not know FOR SURE how this procedure works or lasts for several more years yet.
Lynn
The KeraFlex procedure is in two parts: The KeraFlex microwave procedure and CXL OR acccelerated CXL, called KXL. The KeraFlex is intended to reshape the cornea and the cross linking is intended to freeze this reshaping into place and hold it there. In this respect, it is rather similar to having INTACS inserted with CXL done afterwards to hold the shape. The difference is, KeraFlex is not reversible whilst INTACs can be removed at later date if necessary.
CXL or KXL procedures involve removal of the epithelial layer, which accounts for the pain for the first day or two. This affects some people more than others. CXL with epi off also causes significant corneal shape fluctuation in the first few weeks. This can cause your vision to get better and/or WORSE in the weeks and months after the procedure. This is without the effects of KeraFlex added in to the mix, which are INTENDED to reshape your cornea and so will cause vision fluctations as it is taking effect.. The vision Marc is experiencing at the moment may well be nothing more than a temporary change in refraction or it may be due to other causes. However, none of us can know what is happening - only his surgeon will know that.
What no-one can do is judge whether this, or any other procedure, is giving good OR bad results from reports made on a forum such as this. It worries me equally when people get really hopeful when they see excited reports about a new procedure or when people get upset at bad reports.
As I have said before on this thread, KeraFlex is very similar to CK (Conductive Keratoplasty). Experience over the years has shown that some people get reasonably long lasting effects from CK (maybe a small percentage of the effect is present at ten years) , for the majority, it wears off in a couple of years and for a minority, it wears off very quickly indeed. This "wearing off effect" is being tackled by cross linking but it may be of interest that other remoulding methods combined with CXL also show a wearing off problem. Trials are still ongoing with Ortho K and CXL and some studies show that even with CXL, the reshaping effect can wear off within a month or so. http://www.ortho-k.it/documents/Calossi%20ESCRS%202008.pdf.
The truth is that CXL continues its "work" over a long period of time. I have followed people up after CXL for several years now and found that improvements continue to occur after 3 or 4 years. In one patient, who had CXL in one eye only. and wore soft lenses post op, the CXL cornea improved in shape dramatically whilst the non CXL eye progressed. There was definitely some moulding effect going on from the soft lenses, but it only had a significant effect in the eye with CXL. I have seen this in other patients as well, but in some cases, when lens wear was discontinued, the corneal shape went "off" again.
We have all much to learn about reshaping and CXL but the one thing I am sure of, is that none of this is an instant fix. If anyone is thinking you simply walk into a surgery, get a procedure done and then that's it, you are totally fixed for several years at least, then this is simply not going to happen. This is because epi OFF CXL is not instant and it does not confer stability. While its doing its work, corneal shape changes can mean your vision can get worse as well as better for periods of time.
Epi ON CXL is less invasive and does not cause as much fluctuation but getting the Riboflavin through the epithelium effectively is the challenge. Work is still ongoing in this area.
Monitoring, comparing and evaluating these two methods takes time - years in fact. As does the overall effect of KeraFlex and KXL. Some people here have been quoting that its a fix for ten years. Well so it might, but we wont know for sure until AFTER TEN YEARS, will we? For any new procedure such as this, experts can only make calculated guesses drawn from past experiences. Much of the CK work has been done on normal corneas. Keratoconic corneas have different metabolisms and each eye can behave in a unique fashion - even with the same person.
New procedures like this are very exciting for all of us. However, one has to remember that with any new procedure, experience is gained from the people who have it done first. Improvements are developed from failures. No new procedure or technology jumps into the world fully developed.
If you, as a patient, jump on the bandwagon immediately, then you have to face the risks that the long term effects are completely unknown. Guessed at yes, but factually unknown. If you wait until these are known, then you may well have missed the window of opportunity to have it done at all.
All my work is done with keratoconic/irregular cornea patients and I do fully understand the emotional turmoil that goes with this condition. Everyone hopes for a miracle cure. KeraFlex may be the "one" but we do not know this yet. By its very nature, and that of CXL/KXL, it cannot guarantee everyone instant, stable vision, so if you do go ahead with this, you have to consider the effects on work and family life if there are long periods where you cannot see well enough to drive or work.
I hope this post is seen as a voice of caution. I am not condemning KeraFlex. No-one would be happier than I if it proved to be the answer to KC we have all been waiting for. The truth is, we will not know FOR SURE how this procedure works or lasts for several more years yet.
Lynn
Lynn White MSc FCOptom
Optometrist Contact Lens Fitter
Clinical Director, UltraVision
email: lynn.white@lwvc.co.uk
Optometrist Contact Lens Fitter
Clinical Director, UltraVision
email: lynn.white@lwvc.co.uk
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jhon
- Contributor
- Posts: 32
- Joined: Mon 12 Jul 2010 6:57 pm
- Keratoconus: Yes, I have KC
- Vision: I'm coping with no aids
Re: keraflex
thanks Dr.Lynn for this explanation
the problem that keratoconus patient especially in the advanced level is like the person who is drowning and need anything to rescue itself
but i want to ask does acccelerated CXL will do the same effect as cxl do
isn,t possible the acccelerated CXL won,t hold the shape of cornea for the same period or the same strong like cxl do
and another question about the INTACS ,
when we remove the INTAC ,will it leave a scar and does this scar will affect the result if we do keraflex procedure after the removing
the problem that keratoconus patient especially in the advanced level is like the person who is drowning and need anything to rescue itself
but i want to ask does acccelerated CXL will do the same effect as cxl do
isn,t possible the acccelerated CXL won,t hold the shape of cornea for the same period or the same strong like cxl do
and another question about the INTACS ,
when we remove the INTAC ,will it leave a scar and does this scar will affect the result if we do keraflex procedure after the removing
-
Lynn White
- Optometrist
- Posts: 1398
- Joined: Sat 12 Mar 2005 8:00 pm
- Location: Leighton Buzzard
Re: keraflex
jhon
Believe me, I do understand!
CXL vs accelerated KXL. As far as I am aware, the effect should be the same as far as "holding shape" is concerned. The original research in Germany looked at varying intensity of UV with length of time it is applied. The theory is that a "stronger" intensity for a shorter time is the same as a weaker one for longer. However, at a higher intensity, an relatively small error could have a more significant adverse effect, which is why the cautious way was chosen.
The issue is, I think, that neither CXL nor KXL acts fast enough to stabilise remoulding for all people. The remoulding effect of KeraFlex is instant. The effect of any kind of crosslinking in measured in years. If you are remoulding on a massive scale, then one also has to consider the biomechanical effects on the cornea.
Finally, there is also the "blueprint" issue. The human body has an "image" of what each body part should be like. This is what helps to heal us when we damage ourselves. The body heals us back to where we were - not to where we would prefer to be. This is why plastic surgery often has to be redone.
INTACs - there is some faint scarring left when INTACS are taken out. Does having had INTACS previously affect KeraFlex? Not enough cases have been done to be sure...
I know, jhon, that people desperately want this to work. I know that people simply do not have time to sit and wait to observe what happens over time. I know that people "just" want to get on with their lives. KeraFlex has been done in only a few centres for around 18 months, so we do not yet have all the answers. That is very hard to accept, I know.
Lynn
Believe me, I do understand!
CXL vs accelerated KXL. As far as I am aware, the effect should be the same as far as "holding shape" is concerned. The original research in Germany looked at varying intensity of UV with length of time it is applied. The theory is that a "stronger" intensity for a shorter time is the same as a weaker one for longer. However, at a higher intensity, an relatively small error could have a more significant adverse effect, which is why the cautious way was chosen.
The issue is, I think, that neither CXL nor KXL acts fast enough to stabilise remoulding for all people. The remoulding effect of KeraFlex is instant. The effect of any kind of crosslinking in measured in years. If you are remoulding on a massive scale, then one also has to consider the biomechanical effects on the cornea.
Finally, there is also the "blueprint" issue. The human body has an "image" of what each body part should be like. This is what helps to heal us when we damage ourselves. The body heals us back to where we were - not to where we would prefer to be. This is why plastic surgery often has to be redone.
INTACs - there is some faint scarring left when INTACS are taken out. Does having had INTACS previously affect KeraFlex? Not enough cases have been done to be sure...
I know, jhon, that people desperately want this to work. I know that people simply do not have time to sit and wait to observe what happens over time. I know that people "just" want to get on with their lives. KeraFlex has been done in only a few centres for around 18 months, so we do not yet have all the answers. That is very hard to accept, I know.
Lynn
Lynn White MSc FCOptom
Optometrist Contact Lens Fitter
Clinical Director, UltraVision
email: lynn.white@lwvc.co.uk
Optometrist Contact Lens Fitter
Clinical Director, UltraVision
email: lynn.white@lwvc.co.uk
-
metallic201001
- Contributor
- Posts: 22
- Joined: Sat 14 May 2011 9:18 am
- Keratoconus: Yes, I have KC
- Vision: Contact lenses
Re: keraflex
Hi,
well let us hope that the next 2 years will show good results regards Keraflex.
The 2nd half of the year there will be several medical eye congresses and there will be published
more and more data about crosslinking and keraflex.
http://eucornea.org/Vienna11/default.asp
http://www.keratocone.eu/site_europe/pr ... meduk.html
I myself had crosslinking on both eyes, on the right eye I had SimLC (laser+CXL simultaneous) with Dr. Cummings.
I am still on my way to 90-100% vision. It is really a so hard struggle if you are depended from good vision. Job etc...But I think the surgeries where a good decision in my case.
Keraflex should be used at first for candidates who have no alternative to a keratoplastic I think they can only win and the doctors can collect further experiences.
There will be important congresses this year and I hope first data will be published.
One German doctor offering Keraflex and KXL has announced that she will present first data:
http://www.paulig-augenklinik.com/index ... ,aktuelles
Best regard
Andi
well let us hope that the next 2 years will show good results regards Keraflex.
The 2nd half of the year there will be several medical eye congresses and there will be published
more and more data about crosslinking and keraflex.
http://eucornea.org/Vienna11/default.asp
http://www.keratocone.eu/site_europe/pr ... meduk.html
I myself had crosslinking on both eyes, on the right eye I had SimLC (laser+CXL simultaneous) with Dr. Cummings.
I am still on my way to 90-100% vision. It is really a so hard struggle if you are depended from good vision. Job etc...But I think the surgeries where a good decision in my case.
Keraflex should be used at first for candidates who have no alternative to a keratoplastic I think they can only win and the doctors can collect further experiences.
There will be important congresses this year and I hope first data will be published.
One German doctor offering Keraflex and KXL has announced that she will present first data:
http://www.paulig-augenklinik.com/index ... ,aktuelles
Best regard
Andi
-
Marctec
- Contributor
- Posts: 12
- Joined: Thu 14 Jul 2011 7:40 pm
- Keratoconus: Yes, I have KC
- Vision: Contact lenses
Re: keraflex
metallic201001 wrote:Did You talk with your doctor? What does he say?
Did he inform you about the risks? Have you taken a Pentacam-Topography?
What show the data?
Maybe there is a temporary scar? But why was your vision better before? Did the doctor test you when it is the right point to to the crosslinking?
I guess you were at 20-20 Vision? Maybe you should have a check up at Wellington Eye Clinic in Dublin. I was there with a another OP. Really experts there.
Best regards and I hope your eyes will get better soon.
Andi
Hi, he say that keraflex worked fine, but he think that crosslinking not, because the konus regressed after 2-3 weeks after the op. Yes, I was informed about the risks, but never he said that I will have worse vision than before and that's I have right now.
No temporary scar, and no helth problems, just the keratocones is deformed again, with different deformation than before.
For me was a very bad experience with a lot of painful in both times, a lot of money.. For nothing...
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jhon
- Contributor
- Posts: 32
- Joined: Mon 12 Jul 2010 6:57 pm
- Keratoconus: Yes, I have KC
- Vision: I'm coping with no aids
Re: keraflex
did you do the operation in 20-20 clinc ?
and is the doctor tell you if your vision will improve later in the next few months or not ?
and is the doctor tell you if your vision will improve later in the next few months or not ?
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Marctec
- Contributor
- Posts: 12
- Joined: Thu 14 Jul 2011 7:40 pm
- Keratoconus: Yes, I have KC
- Vision: Contact lenses
Re: keraflex
Yes, at 20-20, he says probably not, bad result friend.
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