Honest Opinions Please

[Mumononeleg]

Hello,

Well tomorrow is the day, my son is having the cross linking on his left eye. I am very nervous for him but know we are doing the right thing to hopefully delay - if not stop - deterioration. We have paid to have it done private as it is not available on the NHS. The consultant says he hopes it will be available in 12-18 months but we don't want to wait that long and risk further deterioration in his vision.

I will be glad when the next 48 hours are over.

Many thanks for all your comments and advise.

[James_Ldn]

Best of luck to your son!

It's definitely the right decision. The first 48 hours are the toughest but once that's out of the way he'll be fine.

[Annabeirut]

Please tell me how his procedure went? My son is having cross linking done on his right eye tomorrow. Was it painful? I'm so scared for him. Any advice appreciated.

[michaell]

Hi, I am sorry if I keep putting my five pence worth in from time to time when individuals are seeking frank advice. As somebody who wore RGPs for almost 15 years and then so to speak went against all the advice I was given and have gotten better for it I think I am somewhat qualified.
There are those on this website that say that they have coped admirably with RGPs and have even had success with transplant surgery, I can say that I had a nightmare of a life with RGPs and that thousands worldwide can testify to the same experience as me not to mention that transplant surgery besides having risks is not a recipe for success for the rest of one's life even if it is free from immediate post op complications which it rarely is. I am told crosslinking has benefits that go far beyond transplant surgery without off course the need for cutting one cornea off and putting a donor's organ onto your eye.
I can testify that contrary to a lot of misleading information often touted by the medical field, KC is not a one -way irreversible condition. What you need to understand is that KC and corneal dystrophies are effectively degenerative conditions of the collagen production in your body. When you start to understand this, you can understand that by taking certain steps to enhance the body's collagen production, you will halt and potentially reverse (as I did) the advance of KC. The problem with KC is that the steeper the curve of the cone becomes, the more tightly stretched the cornea becomes. The industry developed RGPs as an answer to rectify the visual acuity problems associated with abnormal curvature of the cone. Unfortunately, RGPs tend because they are designed to be fitting more tightly against the cone to rub against the top of the cone thereby leading over time to abrasion of the cornea itself. Eye doctors and opticians will deny this but again I tell you that I have evidence to the contrary. Believe me, I was absolutely neurotic about cleaning and eye drops over the time but after about 10 years use my eyes started to show increased "wear and tear" shall we say due to the increased prescriptions I needed.
I would suggest that whilst the condition is in its earliest stages to experiment with spectacles as long as possible and deal proactively with any stress inducing elements in his life which in my experience are at the root cause of the development of KC in youth.
I would urge you to deal with the following as they have a seriously negative bearing on KC: Junk food - eliminate: you need to get him to eat fresh food as much as possible especially protein and fibre, especially greens; Use physical exercise as a stress busting tool.
If you have any questions, feel free to email me.

[kieran19685]

So i will take my contacts out, quit my job, lose my house and let my kids starve but HEY fresh food will solve the issue!!!!

Great post¬!!!!!!!!!!!!!!!

[michaell]

I am not referring to adults with family commitments and the like. But I would certainly suggest that for those without dependents, especially children or youths and anybody outside working life, it would pay to look at the source of the problems behind the KC rather than just willingly accept what the medical field are saying.
For all I know, you might cope just fine with RGPs. However, I did not. I had dry eyes and more often than not red eyes day in day out from the wearing of the lenses. I had head pressures day in day out from the wearing of the lenses. At the end of my so-called marriage with RGPs, I was a nervous wreck and lost my job because I was considered a liability. So don't talk to me about quitting a job and losing a house. I never ever got to the house part in my life because my KC advanced too bloody fast during my 20s and wrecked my early professional life. And the reason I am being so vocal on this site is because I want to help others being diagnosed in their teens from going down the spiral of doom that I entered into!!!!!!!!!!!!!!!!!!!!!!!
I was fobbed off left right and centre by so-called experts whether eye doctors in Harley Street or elsewhere and so-called professional opticians that nothing was wrong until after 12 years of wearing them, I decided to take matters into my own hands. Only through extensive study of the subject by myself did I manage to "see" that what I was being told was a lot of c**p. All I can say is that I have not regretted one day since I took that step. In early 2006, at the peak of when my eyes were as bad as they ever were, I was examined by doctors at Moorfields and told that I would be a so-called excellent candidate for corneal transplants in both eyes. At that examination, they did laser readings of my cornea and just over 2 years later I had separate readings done in another country which showed that during this initial period of no longer wearing the lenses the thickness of my cornea had significantly improved. Now according to so-called expert medical knowledge at the time, this was a pure bloody miracle. I tell you that the profession is spewing a whole lot of horse manure just to lather their own backside.
Now, I am not shoving my ideas down people's throats. It is for every individual to assess the facts surrounding their own case as they see fit, but don't you dare insinuate that I am talking a lot of rubbish, because this topic is far too bloody serious for this!!!!!!!!!!!!!!!
In my humble opinion based on my own personal painful experience, people's lives are being ruined because of the bloody mindedness of an industry that puts its own prestige and profits ahead of the interests of those who suffer from KC!

[kieran19685]

I can't see without lens
I can't see with glasses
Lens ensure I can work and support my family

You tell me the options?

I wear a contact on my better eye
I wear no contact on my worst eye

My left eye is worst?

Explain

[Anne Klepacz]

I completely understand that the topic of potential cures for KC is a very emotional one. But we do ask forum users to please not shout at one another here. Michaell, it's great that you can now manage without contact lenses, but as you say yourself, abandoning lenses is not an option many people with KC can pursue when they need to work and support a family. It's also true to say that contact lens technology has come on a great deal in the last 10 years, with more different materials and lens designs being used with some of them being 'kinder' to the cornea than the standard rgps. The cornea also starts to become more rigid as we get older (this seems to be the process that CXL reproduces) so many people will find that their KC stabilises around the age of 40 or so. There is also a lot of research going on into KC so scientists are beginning to develop more understanding of this condition. While there's still no scientific evidence that I'm aware of linking diet and KC, there is evidence that a healthy diet with plenty of green vegetables lowers the risk of developing age related macular degeneration, a very common eye disease in the elderly, so who knows what might be discovered about KC in the future?
For young people with early KC, the increasing use of CXL will hopefully mean fewer people becoming dependent on contact lenses for reasonable vision and even fewer ever needing a corneal transplant. But for those further down the KC road, that isn't an option and we all have to find our own ways of managing the condition.
So please can we take some of the heat out of this discussion and allow this forum to be the source of support it's meant to be.
Thank you, Anne

[Ali Akay]

Thanks Anne for your timely intervention!
Michaell, its such a shame that you seem to have so much anger in you. You seem to genuinely believe that there's a big consiparacy out there with the professionals fitting keratoconic patients with contact lenses for some ulterior motive. Please rest assured there's no consiparacy, professionals can only advise you based on what they know at the time. I obviously don't know the details of your experience and the quality of information given to you, so can not comment. If you were given inaccurate information it's most probably because the person advising you knew no better, not because he/she deliberately misled you!

Having said that, I share your belief that there's a link with keratoconus and diet / stress and other factors. This is not based on scientific research but is merely my personal opinion based on fitting hundreds of keratoconic patients over many years. For example, I've come across teenagers developing KC soon after being assaulted. Despite the assault not causing any eye injury, they felt, within days, their vision had rapidly deteriorated. This could well be due to the stress of the traumatic experience they suffered but it is difficult to prove a cause-effect relationship. At the best, it is anectodal.However, when the patient attends the Eye Clinic, the ophthalmologists or other professionals they see are only trained to deal with the presenting symptom. As the presenting symptom would normally be poor vision their focus is on remedying the problem. They are not trained holistic therapists, stress counsellors or nutritionists!

Latest research suggests that continued inflammatory reaction from poorly fitting gas permeable contact lenses may result in loss of collagen, hence deterioration of KC. The modern approach to managing KC patients is in the order: spectacles/ disposable soft lenses/ specialist soft lenses/rigid lenses. However every case is unique and if a patient has fairly advanced KC on presentation, the most appropriate action may well be fitting with gas permeable lenses straightaway to give them good vision so that they can continue studying for their A Levels! The important factor with RGPs is to make sure the patient is monitored closely and lenses changed as necessary to minimise mechanical insult on the cornea.

On a slightly different matter, its very well documented that myopia (short-sightedness) is increasing, especially in the Far East and scientists are busy looking at the causes and possible preventative measures. Some people believe this is linked to change in diet with youngsters in the far east eating more Western style diet with processed foods, etc. I think it can be argued that KC is also on the increase and there could well be a link with diet.

Hence, I believe your advice that reducing stress levels, increasing physical activity and good diet are all very sound advice to any newly diagnosed keratoconic. However, if they can't see clearly, they need to do something about it and if this means wearing contact lenses, so be it. Contact lens practitioners are there to help when glasses don't work!

[michaell]

I have tried to take a step back from this discussion since what I can now see was a highly emotionally charged response on my part.
I must clarify that I wish nobody any ill-will. It is regrettable that I did not meet professionals like yourself, Ali, during my life.
I only know how dependent I was on the lenses in both eyes for well over a decade for full visual acuity and tolerated all the pain and discomfort for the sake of having that full visual acuity. I am only too aware of having been through the whole process after I decided to stop wearing the lenses of the stigma which those who are blind or indeed part time partially blind must attract and it is indeed to avoid this stigma that everybody has historically found the idea of the wearing of the lenses such an attractive solution. There came however a point in my life when I could no longer justify that trade-off to myself and believed through a combination of logical reasoning and speculation without knowing the outcome of course that a certain path of action would lead me to a better place. It's been hard for sure. Without a variety of support systems, I could never have undertaken this action. And of course, I to this day do still not have perfect vision with spectacles although infinitely greater than I had at the stage when I initially refrained from continuing to wear RGPs.
I had support systems that most people do not have the luxury of having. In addition, it must be emphasised that I have no dependents to support. I can only wish everybody who has KC a pain free solution to dealing with it and that the knowledge surrounding KC can over time be continuously improved upon to give the current generation of patients greater chances than what past generations have had.
Kind regards