keraflex

General forum for the UK Keratoconus and self-help group members.

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drink
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Keratoconus: Yes, I have KC
Vision: Contact lenses

Re: keraflex

Postby drink » Wed 29 Jun 2011 5:19 pm

gshr wrote:Ttuf,
i am surprised you said I got this wrong....everything i have read so far says that I am correct. Quite frankly I'm insulted...maybe you should check your facts rather tahn assume. :evil: :x


lol you get insulted very easily in that case. Apologies :) .

hmmmmm, I found this-
http://www.wellingtoneyeclinic.com/medi ... oconus.pdf

Now i really am confused, as they even offered a consultation etc and sounded like they knew what they were talking about.

Is it only avedro who supplies kerafelx equipment? there are no other suppliers? Il try find some info.

gshr
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Re: keraflex

Postby gshr » Thu 30 Jun 2011 5:15 pm

simple...phone and ask them directly. its not hard.

jhon
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Keratoconus: Yes, I have KC
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Re: keraflex

Postby jhon » Fri 01 Jul 2011 10:24 pm

calm down guys ,in the end we need the places where keraflex machine is exist
and we can only trust the places which take the machine in the regular way from Avedro company
and according to comodor after asking Avedro company, there are three places which have the keraflex machine so far
Germany ,United Kingdom and Turkey

liam82
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Re: keraflex

Postby liam82 » Sat 02 Jul 2011 6:29 pm

There are also places which are trialling the keraflex system, of which the wellington eye clinic was one.

When you ask avedro which places are performing the surgery, they more than likely will just give you the places that are actively doing the procedure full time- rather than places which are conducting trials.

So thats probably where Ttuf got his info from. Hes definitely right, the wellington eye clinic were offering keraflex as part of a trial for a while, which is why the costs were so, comparitively,low.

For keraflex, do people think over the course of the next year or so, more places will be getting the machines and as such the price market could (possibly) be a bit more competitive.

Im saving up to have the procedure done myself now, so am hopeful over the course of the next year or so we'll start to see other places offering it slightly cheaper, or with different options like finance.
Like has happened with CXL.

Surely having a lower price, and having exponentially more possible customers is better than having a high price which not many people can afford.

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metallic201001
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Keratoconus: Yes, I have KC
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Re: keraflex

Postby metallic201001 » Sat 02 Jul 2011 7:05 pm

Hi Liam,

I guess you are right with what you said.
But do you mean that Wellington Eye Clinic don´t use it for trial anymore?
I am in close email contact with Dr. Cummings because I had SimLC on my right eye.
He never mentioned that he has stopped using Keraflex.

I agree with you. I hope that the price will decrease with the time. I read your nick info.
You can cope without lenses or spectacles?
So why do you want to try Keraflex?

Best regards

Andi

liam82
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Keratoconus: Yes, I have KC
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Re: keraflex

Postby liam82 » Sat 02 Jul 2011 8:02 pm

metallic201001 wrote:Hi Liam,

I guess you are right with what you said.
But do you mean that Wellington Eye Clinic don´t use it for trial anymore?
I am in close email contact with Dr. Cummings because I had SimLC on my right eye.
He never mentioned that he has stopped using Keraflex.

I agree with you. I hope that the price will decrease with the time. I read your nick info.
You can cope without lenses or spectacles?
So why do you want to try Keraflex?

Best regards

Andi

No idea.

I know there was a machine that was also being trialled in london, that at 1 point ended up in newcastle for abit.

I guess places test them out for abit, then decide based on thier experiences with the machine, costs,outcomes over periods of times etc whether its viable for them to then order thier own machine and equipment and then set out a plan from there.

Thats all speculation on my part though, but there were a couple of places in the uk that were conducting keraflex trials.

I do currently cope without lenses or glasses, but I am trying to get used to wear a contact lens in my left eye. Ive had cxl done on my left eye to prevent it getting worse (its moderate KC, so everythngs kind of blurry and my sights being carried by my right eye).

I would like keraflex, because my plan is to ultimately go travelling with my girlfriend. I dont want to have to be constantly carrying around packs of contact lens cleaner, or having to follow that kind of routine, or worrying about losing or damaging contact lenses somewhere on the other side of the world, then having to fly back early to get them replaced on the nhs.

And also, I want as close to uncorrected vision as I can get. I play lots of sport, I pass out drunk at a lot of parties and whatnot ( :lol: ) and id just much rather not have to deal with the hassle of stuff like hard,expensive,arkward to replace contact lenses.

If keraflex can even slightly correct my vision, it should take it back enough that contact lens wear shouldnt be nessecary for the majority of the time anyway. And hopefully id be able to move onto to a soft lens or something

I know it sounds ridiculous, but im just very easily frustrated.

I've been very depressed about having KC and its really knocked me out of my stride. Again, i know it probably sounds daft.

But this gives me something to focus on. A year of saving,and lots of overtime, should get me at least half way there :)

liam82
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Keratoconus: Yes, I have KC
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Re: keraflex

Postby liam82 » Mon 04 Jul 2011 9:30 am

After some number crunching, and making difficult choices- I should be able to afford the keraflex procedure within 10-12 months.

I dont earn much, but with some crazy levels of overtime, saving, and selling some stuff- i should be able to get at least to it.

Its going to be tough. Thing is,its not a magic bullet and probably wont cure the condition. Gotta have hope though :)

But any level of improvement is welcome and hopefully during that time, more info and testamonials will be available as well as other enhancements.

Who knows :)

cummingsab
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Re: keraflex

Postby cummingsab » Fri 08 Jul 2011 11:44 am

It has been brought to my attention that there is some confusion with regards the Keraflex procedure being available at the Wellington Eye Clinic. The response that follows hopefully clarifies matters for all concerned: the WEC collaborates with the CEO and the research team at Avedro , offering Keraflex and KXL (accelerated cross linking) as part of the company’s advanced clinical experience program and not as a commercial clinic. We offer Keraflex treatments on a regular basis at the WEC. Sincerely, Dr. Arthur Cummings

Marctec
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Keratoconus: Yes, I have KC
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Re: keraflex

Postby Marctec » Thu 14 Jul 2011 7:48 pm

Hi guys, I'm new here, my name is Marc, and I'm from Spain,
I flight to UK, fo do the Keraflex and CXL.

Just to inform about my op.
I have KC on both eyes, and done first the right one ( my worse eye ) after the KFLX next 24-36 hours are very painful, and results were bad with me.

Next 15 days after the op. I seems to work, but now just 2 month after the op. I have worse vision than before the KFLX, so think two times before do the procedure.

Of course i done the accelerated CXL, one week after the KFLX, during the op, extremely painful, i felt fire in my eye. Also next 48h ... Well no words to describe...

Sorry for this bad news, but it was the things happened to me.

And, sorry for my bad english!

Best regards

jhon
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Keratoconus: Yes, I have KC
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Re: keraflex

Postby jhon » Fri 15 Jul 2011 1:24 pm

i feel sorry for the bad results of your eye Marc
and of course sorry for us
can you tell me how much this operation cost you and how much accelerated CXL cost you
and had you done any operation on your eye before you did kxl and cxl
i hope that your eye get better soon


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