keraflex

[jhon]

hi Carl
i hope you get recovered from the operation

please don,t forget to tell us about your experience

merry christmas for you and for all members
and happy new year

[Carl Evans]

Hello

Sorry its took a while to respond.

Well i had the Keraflex done at the begining of December,To be fair yes it did hurt after the op,but during it i didnt feel a thing. After 48 hours i didnt feel too much, appart from the eye being a little sensitive to light. I was meant to have the collagen cross linking done 1 week later, but i had to wait for scaring from the keraflex to reduce (white ring around the cornea were they burn it) so i ended up going for the cross linking on 23rd December. I was really panacking about going then due to it being Christmas but my specialist told the first 36 hours were the worst so i went ahead with it. The cross linking procedure isnt a quick one, took me about 90 minutes, and its bloody boring just lying there . but with an ipod etc time soon went, plus you can have a good chat with the nurses and so on. I didnt feel any pain during the op but after, on the way back to blackpool when the meds wore off, i have never fealt anything like it, the first 12 hours i found the worst, i was in agony but the following morning after a very stressfull night i wasnt to bad. i have had lots of check ups and i am now waiting for one in march. my vision is miles better now i can actually see what i am watching on tele at night it makes such a difference. i would definately have it done again in 5 years or so when it wears off, but make sure i had some very strong pain killers before hand.

My specialist is a Mr Ramen who operated on me in Manchester at the Face and Eye Clinique. I have had all my checks at the Blackpool Victoria Hospital and Spire Hospital.

when i know exactly what my vision is i will reply again. But as far as i am concerned it is brilliant i no longer have to wear a scleral contact lens in my right eye

if anyone else is having it done good look and you will love the results.

[jhon]

congratulations Carl for the success of operation
and thanks for the information

but i want to ask you
are you now using any kind of correction for your sight
and how long it take your sight to has a good vision

and why you will do it again in 5 years

[superc0w]

congratulations Carl for the success of operation
and thanks for the information

but i want to ask you
are you now using any kind of correction for your sight
and how long it take your sight to has a good vision

and why you will do it again in 5 years

I'm a keratoconus sufferer myself and was looking for information regarding keraflex when I found this forum. Here's to share what I found:

As I understand it, keraflex is a 2-step non invasive procedure mainly used to "correct" keratoconus. The first step uses microwave energy to flatten/reshape the cornea. However, this effects of this first step are temporary. Hence the 2nd step, where collagen cross linking is used to strengthen the cornea so that the effects of the first step last. Initial results from trials seem to be promising, but because this procedure is new, how long these improvements last are unknown as yet.

That could be why another op is required after 5 years. But that's just my guess, anyone with more information please feel free to correct me.

[drink]

Apparently i have been told there is a place in manchester and blackpool who are now doing keraflex. Im going ot be intouch with them soon hopefully during next week, and ask a few questions etc.
If anyone would like me to ask any specific questions for any of you guys or girls, either PM them to me or post on this thread, and i will do my best to get th answers for you when i speak to the surgeon either over phone, or when i go in for an apoointment.

Cost wise im really hoping it something near laser eye surgery cost (cheaper would be better) but in back of my mind got a feeling it will be very very dear.
Either way, if it avoids any futher progression and avoids the need for a transplant in future, that would be well worth the money.

[Lynn White]

Just to be clear about this:

KeraFlex has two componenets: The corneal reshaping and the halt of progression.

The second is due to CXL, so that this procedure on its own will do exactly the same thing i.e. reduce the need for a graft. CXL is used in conjunction with many other surgical procedures in order to "fix in place" whatever the surgery is doing.

The reshaping part is done by the microwaves and this does wear off after some years. It has been used for presbyopia treatment for many years and usually has to be redone after a couple of years or so.

What we don't know is how quickly this microwave surgery will wear off on a KC cornea after it has been cross linked, if it wears off at all and if it does, by how much. Also, some of the reshaping is quite significant and we do not know what long term effect this has on the bio mechanics of the cornea.

Unfortunately, we have no alternative but to wait to see what the long term effects are. Cross linking itself has been around for nearly 15 years now and we can say with more and more confidence that it does seem to be beneficial. There is really no alternative but to wait and see to answer some of the questions here.

So, if you have keratoconus and are wondering about balancing risks, the CXL part of the KeraFlex procedure has years of research study back up and you can read up on the risks and benefits. The Microwave part does not have the follow up and no-one can say for sure what will happen in years to come.

Each individual has different viewpoints on risks and benefits and you have to consider these for your own situation NOT someone else's. Someone who has a rapidly progressing condition with an already thin cornea is in a completely different place to someone who has a mild form of the condition that is not particularly advancing. For the first, having the procedure is in the "what have I got to lose?" scenario whereas someone in the second situation has everything to lose if it goes wrong.

I often see people on here asking others "I would like to hear of your experiences" re new procedures and that does worry me, I have to say! You can never properly judge a procedure on someone else's experience - good or bad - because you are only seeing one very limited side of the issue. If you do ask for others experiences, please do not act on them without more research.

Having now sounded like a doom and gloom merchant, I would like to add that all of these advances are very exciting and most welcome after decades of nothing particularly happening in the field of treating KC. I often tell my patients that if you have to have KC, you couldn't have it at a better time. I am not sure that goes down well but it does happen to be the truth!

Lynn

[drink]

Good info there Lynn, extremely helpful :thumbsup:

Me personally i have had KC since teens, now 25, i know Most people on here have been living with it for much longer if not double the time. Id just like to hault the progression and avoid the need for a graft in future, or lose my job due to progression in future as i love my job and its something what interests me.

Lynn would you know the rough estimate (average) time needed for the healing process after having keraflex done or CXL on its own?
Or the rough costs involved? Im expecting something around the £6k mark

[Lynn White]

Hi Ttuf,

CXL on its own is a much better known quantity. It can take anything from a few weeks to a few months for the vision to settle down post op. Much of this depends on your current contact lens modality. RGPs can cause significant moulding of the cornea and the longer you have worn them, the longer it takes to settle when you remove lenses, so long term RGP wearers tend to take longer settling than people who do not wear lenses at all.

The best option is to have one eye done at a time and wait until the first is fully settled before going to the other eye.

KeraFlex is an unknown quantity as far as settling time is concerned. My gut feeling is that if there is considerable shape changing involved, then it will take longer to settle and that is certainly my experience when tracking people who have had INTACs or T-CAT for instance.

Costs for CXL are on average around £1200 an eye in the UK but the price does vary according to the centre offering it. I really do not know KeraFlex prices!

Lynn

[metallic201001]

Hello,

I am from Berlin in Germany and was in mail contact with Dr. Cummings from Wellington Eye Clinic in Dublin. He is an absolute experte for KC I think.

He has started with first treatments since the beginning of this year.
http://www.wellingtoneyeclinic.com/medi ... oconus.pdf

As he said to me the price at the moment is 2450 Euro, so same as SimLC (T-CAT).
I fly to him for my right eye to be treated with SimLC.

Hope I could help some of you with my information.

Andi

[drink]

Thank you very much Lynn.
I can understand about having to be a bit wary of keraflex, as the longterm issues of it are unkown as it hasnt been around for long, also of how long the keraflex treatment will last for. Where as on the other hand CXL has been around for many years and proven. I have been wearing contacts ever since i have found out i have got KC, on average i wear them for around 17hours a day, everyday. Guessing healing process might take slightly longer, but i take it its different for every patient as everyones situation and KC is different and no 2 can be the same.

It certainly is something to think about on what route to take, as i recently read (unsure of the validity of the article i read) if someone has CXL done, then they cannot have keraflex done due to the cell regeneration process. So its one of those, the decision needs be made wisely and with great thought.

Neither KXL or CXL is available under NHS, so it will be my hard earned cash (everything i own basically), really do need to have a think, do more research and see what route to take, as i am really set on having one of the treatments done and put my name down for it soon as i decide on which to go for.

Lynn your posts and responses to my previous posts are much much appreciated. Many thanks.