Hey guys, i am still waiting hear back from a surgery regarding an appointment for keraflex in manchester-
http://www.20-20visionperfection.co.uk/ ... /keraflex/
Anyone else know of any other places around the north west that carry out the keraflex procedure?? thought id ask on this thread first before starting another fresh thread.
keraflex
Moderators: Anne Klepacz, John Smith, Sweet
-
metallic201001
- Contributor
- Posts: 22
- Joined: Sat 14 May 2011 9:18 am
- Keratoconus: Yes, I have KC
- Vision: Contact lenses
Re: keraflex
Hi,
I only knew one in Dublin, Wellington Eye Clinic (see above), and in Cottbus Germany Dr. Paulig Augenklinik ( http://www.paulig-augenklinik.de/index.php?project=paulig&pageID=leistungen,operationen,keraflex )
I personally look for alternative locations too.
Maybe you could write to AVEDRO and they can tell you which clinics in Europe or UK offer Keraflex.
Please keep us up to date.
Andi
I only knew one in Dublin, Wellington Eye Clinic (see above), and in Cottbus Germany Dr. Paulig Augenklinik ( http://www.paulig-augenklinik.de/index.php?project=paulig&pageID=leistungen,operationen,keraflex )
I personally look for alternative locations too.
Maybe you could write to AVEDRO and they can tell you which clinics in Europe or UK offer Keraflex.
Please keep us up to date.
Andi
-
drink
- Regular contributor
- Posts: 80
- Joined: Mon 15 Jun 2009 1:16 am
- Keratoconus: Yes, I have KC
- Vision: Contact lenses
Re: keraflex
Thanks for that pal.
The name Avdro does pop up alot on google aswell and so does Dr.Paulig.
Im just very surprised i cant find many surgeries in UK who carry the procedure out. Only found one in UK which is in the link i mentioned above.
Will definitely try to drop an email to Avedro!
The name Avdro does pop up alot on google aswell and so does Dr.Paulig.
Im just very surprised i cant find many surgeries in UK who carry the procedure out. Only found one in UK which is in the link i mentioned above.
Will definitely try to drop an email to Avedro!
-
liam82
- Regular contributor
- Posts: 121
- Joined: Sat 08 Jan 2011 1:11 pm
- Keratoconus: Yes, I have KC
- Vision: I'm coping with no aids
Re: keraflex
Ttuf wrote:Hey guys, i am still waiting hear back from a surgery regarding an appointment for keraflex in manchester-
http://www.20-20visionperfection.co.uk/ ... /keraflex/
Anyone else know of any other places around the north west that carry out the keraflex procedure?? thought id ask on this thread first before starting another fresh thread.
They also have a clinic in blackpool where they do it. I spoke to the guy who does it up there and he seemed really nice
-
drink
- Regular contributor
- Posts: 80
- Joined: Mon 15 Jun 2009 1:16 am
- Keratoconus: Yes, I have KC
- Vision: Contact lenses
Re: keraflex
Just spoke to the woman regarding the manchester one, seemed helpful.
Booked in for a consultation which is couple hundred pound. But why is it i cant find anywhere on the web who shows the prices and the cost of having keraflex done, not even one hit on google shows the price for it....
Il be finding out on friday, but would be good to know before hand of what to expect.
Booked in for a consultation which is couple hundred pound. But why is it i cant find anywhere on the web who shows the prices and the cost of having keraflex done, not even one hit on google shows the price for it....
Il be finding out on friday, but would be good to know before hand of what to expect.
-
metallic201001
- Contributor
- Posts: 22
- Joined: Sat 14 May 2011 9:18 am
- Keratoconus: Yes, I have KC
- Vision: Contact lenses
Re: keraflex
go to Dr. Cummings (Wellington Eye Clinic Dublin), in a mail he told me it is the same price as SimLC so 2450 Euro. Thats cheaper than 6000 Euro at 20-20 vision.
Andi
Andi
-
drink
- Regular contributor
- Posts: 80
- Joined: Mon 15 Jun 2009 1:16 am
- Keratoconus: Yes, I have KC
- Vision: Contact lenses
Re: keraflex
metallic201001 wrote:go to Dr. Cummings (Wellington Eye Clinic Dublin), in a mail he told me it is the same price as SimLC so 2450 Euro. Thats cheaper than 6000 Euro at 20-20 vision.
Andi
were you told 2450 for each eye or both? That does sound very reasonable and affordable.
The 6000 i mentioned before was just a guess, I think CXL is around 1500 each eye, so i just doubled it at a rough guess.
Im going to go ahead with the appointment on friday and have a talk with him and have a few questions answered, also exact prices etc. Then decide on what route to take and also consider the journey to Dr.Cummings.
Re: keraflex
Is there any indication how early a stage would one have to be at in order to even consider this treatment?
Would you have to be at a stage where CXL was an option?
Would you have to be at a stage where CXL was an option?
-
longhoc
- Moderator
- Posts: 349
- Joined: Sun 26 Dec 2010 11:13 am
- Keratoconus: Yes, I have KC
- Vision: Graft(s) and contact lenses
Re: keraflex
Hi all
What follows is only my opinion – and it’s based not on specific factual evidence but rather on the absence of such evidence. So it carries no claims about whether it is good, bad or total rubbish.
When I look at whether I might consider a particular procedure to be appropriate for my condition, I need to make a risk/reward assessment. Taking an aspirin has a risk associated with it. It also has a well established, proven reward. About a hundred years of clinical research has defined the risks pretty well and the rewards are quantifiable again based on a huge amount of research and a thorough understanding the way it works. At the opposite end of the spectrum we have new, unproven medicines and even outright quackery.
What shifts a drug or procedure along the line is rigorously constructed and executed clinical trials including follow ups over an appropriate timeframe and peer reviews to hopefully spot any mistakes which might creep in.
Of course, the nature of the disease process and prognosis I was facing would shift my risk tolerance. If I had a life-threatening condition, I’d consider all sorts of potentially risky or unknown treatments because, frankly, I might have nothing to lose.
We are all at different places along that risk/reward curve. I think it is a very useful exercise to consciously stop, take stock and assess exactly where you are on that curve. To do that, you need to examine your own attitudes to the risks and potential benefits to your sight and have information available on what you are potentially doing to it.
When I look at the libraries of medical research available online (which is generally quite comprehensive and covers most published studies) I can find reasonably comprehensive information on different RGP lens types, modalities and their effects. I can find generally good research and trial outcomes on Crosslinking. And because surgery seems to be at the “glamour” end of the medical profession, well, there’s an awful lot about DALK, PK and associated corneal transplant procedures.
All I can find on the procedure being discussed here is the start of a trial in 2009. There is no information about how that trial is to be conducted. There is no information about what the entry criteria are. There are no timescales. In short, there’s nothing really to go on by way of independent evidence-based research.
Conversely, it is clear that the procedure is not currently offered in the US. The US is notoriously conservative when it comes to medicine. This largely stems from what could politely be described as being a litigious society. That cuts both ways. Yes, it is possible that progress is slower due to an overly-cautious regulatory regime and legal environment. It is also possible that consumer protection is stronger as a result. It is a legitimate question to ask why the vendor isn’t operating in the large and important US jurisdiction.
Were I to consider whether or not this procedure would be a good choice for me, I’d need to primarily consider the safety and efficacy of the procedure. While I believe that a positive attitude and hope for the future are essential for successfully managing our condition, optimism alone is not I don’t think enough on its own. It certainly isn’t a good substitute for a nice thick wodge of independent clinical data.
So as I said at the top, I’ve nothing specifically to caution against investigating what’s on offer here. But I’d ask anyone considering it to have a good hard-headed look at what objective information they can find to support it. And not just on day 1, but 5 or even 10 years down the line. From a patient’s perspective, I don’t think it is unreasonable either to have explicitly stated indications and contraindications (e.g. corneal thickness, age, previous incidence of hydrops etc. etc.) clearly spelt out by the provider in their product labelling and marketing.
And especially if you’re being asked to part with a not-insignificant amount of your hard-earned cash, you need to know what you can expect in terms of how long any correction will last so you can budget for repeat treatment cycles if needed. There also seems to be some questions about whether you are being accepted as part of a trial. Certainly if you’re having the procedure under trial conditions, you should not hand over any money. I would also expect to have my expenses reimbursed. The key reason being that in a genuine trial, you might be part of the sham-procedure control group. You also have to ask yourself if you’re genuinely willing to participate in such a trial when there is the real possibility you’re not actually receiving any treatment. By being part of a trial, you're doing the manufacturer a favour -- not the other way round !
Hope I’ve not put anyone on a downer here. It is only my thoughts after all. For me, I’m assessing it like I would any business deal. If I get more questions than answers, I have to walk away and not “fall in love” with an investment. If it’s a good opportunity, it will still be there tomorrow.
I do though appreciate we all have our own particular circumstances and would totally understand anyone who made a different set of choices.
Best wishes
Chris
What follows is only my opinion – and it’s based not on specific factual evidence but rather on the absence of such evidence. So it carries no claims about whether it is good, bad or total rubbish.
When I look at whether I might consider a particular procedure to be appropriate for my condition, I need to make a risk/reward assessment. Taking an aspirin has a risk associated with it. It also has a well established, proven reward. About a hundred years of clinical research has defined the risks pretty well and the rewards are quantifiable again based on a huge amount of research and a thorough understanding the way it works. At the opposite end of the spectrum we have new, unproven medicines and even outright quackery.
What shifts a drug or procedure along the line is rigorously constructed and executed clinical trials including follow ups over an appropriate timeframe and peer reviews to hopefully spot any mistakes which might creep in.
Of course, the nature of the disease process and prognosis I was facing would shift my risk tolerance. If I had a life-threatening condition, I’d consider all sorts of potentially risky or unknown treatments because, frankly, I might have nothing to lose.
We are all at different places along that risk/reward curve. I think it is a very useful exercise to consciously stop, take stock and assess exactly where you are on that curve. To do that, you need to examine your own attitudes to the risks and potential benefits to your sight and have information available on what you are potentially doing to it.
When I look at the libraries of medical research available online (which is generally quite comprehensive and covers most published studies) I can find reasonably comprehensive information on different RGP lens types, modalities and their effects. I can find generally good research and trial outcomes on Crosslinking. And because surgery seems to be at the “glamour” end of the medical profession, well, there’s an awful lot about DALK, PK and associated corneal transplant procedures.
All I can find on the procedure being discussed here is the start of a trial in 2009. There is no information about how that trial is to be conducted. There is no information about what the entry criteria are. There are no timescales. In short, there’s nothing really to go on by way of independent evidence-based research.
Conversely, it is clear that the procedure is not currently offered in the US. The US is notoriously conservative when it comes to medicine. This largely stems from what could politely be described as being a litigious society. That cuts both ways. Yes, it is possible that progress is slower due to an overly-cautious regulatory regime and legal environment. It is also possible that consumer protection is stronger as a result. It is a legitimate question to ask why the vendor isn’t operating in the large and important US jurisdiction.
Were I to consider whether or not this procedure would be a good choice for me, I’d need to primarily consider the safety and efficacy of the procedure. While I believe that a positive attitude and hope for the future are essential for successfully managing our condition, optimism alone is not I don’t think enough on its own. It certainly isn’t a good substitute for a nice thick wodge of independent clinical data.
So as I said at the top, I’ve nothing specifically to caution against investigating what’s on offer here. But I’d ask anyone considering it to have a good hard-headed look at what objective information they can find to support it. And not just on day 1, but 5 or even 10 years down the line. From a patient’s perspective, I don’t think it is unreasonable either to have explicitly stated indications and contraindications (e.g. corneal thickness, age, previous incidence of hydrops etc. etc.) clearly spelt out by the provider in their product labelling and marketing.
And especially if you’re being asked to part with a not-insignificant amount of your hard-earned cash, you need to know what you can expect in terms of how long any correction will last so you can budget for repeat treatment cycles if needed. There also seems to be some questions about whether you are being accepted as part of a trial. Certainly if you’re having the procedure under trial conditions, you should not hand over any money. I would also expect to have my expenses reimbursed. The key reason being that in a genuine trial, you might be part of the sham-procedure control group. You also have to ask yourself if you’re genuinely willing to participate in such a trial when there is the real possibility you’re not actually receiving any treatment. By being part of a trial, you're doing the manufacturer a favour -- not the other way round !
Hope I’ve not put anyone on a downer here. It is only my thoughts after all. For me, I’m assessing it like I would any business deal. If I get more questions than answers, I have to walk away and not “fall in love” with an investment. If it’s a good opportunity, it will still be there tomorrow.
I do though appreciate we all have our own particular circumstances and would totally understand anyone who made a different set of choices.
Best wishes
Chris
-
drink
- Regular contributor
- Posts: 80
- Joined: Mon 15 Jun 2009 1:16 am
- Keratoconus: Yes, I have KC
- Vision: Contact lenses
Re: keraflex
Hey Chris, that is actually a brilliant write up pal :salut{ .
Me personally i started thinking along the same lines as you, and a day before my consultation was due i actually cancelled it, as it was ALOT of money, and i thought i may aswell wait another year and see how it goes on in the market and see how it picks up,If they notice any flaws etc. Just overall being cautious.
But i guess alot of people who consider keraflex are people like myself who would like to stop the progression of KC and avoid reaching a stage where graft might be needed soon as possible. And at the moment keraflex (although early days like you mentioned) does look very promising.
Risk factor, again the keraflex procedure hasnt been around for that long so it is a bit of a grey area at the moment
.
Me personally i started thinking along the same lines as you, and a day before my consultation was due i actually cancelled it, as it was ALOT of money, and i thought i may aswell wait another year and see how it goes on in the market and see how it picks up,If they notice any flaws etc. Just overall being cautious.
But i guess alot of people who consider keraflex are people like myself who would like to stop the progression of KC and avoid reaching a stage where graft might be needed soon as possible. And at the moment keraflex (although early days like you mentioned) does look very promising.
Risk factor, again the keraflex procedure hasnt been around for that long so it is a bit of a grey area at the moment
.Return to “General Discussion Forum”
Who is online
Users browsing this forum: No registered users and 63 guests