UK Keratoconus Self-Help and Support Association

Hello!


My name is Mocan Oana, I am 22 years old and I was recently diagnosed with keratoconus (8/12/2010); I am wearing glasses starting the year 2007 (left eye = -0.5 and right eye = -1,5). At the oftalmologic consultation, I was recommended intacts and cross-linking (after 2 month from placing the intacts) but the doctor did not guaranteed the success of the procedure not even in percents. I have been to Hungary, and they told me that they don't threat the stage 1 and 2, and that I should wera lenses and only after that to have a transplant. I don't want to get to a transplant, I want to threat the disorder now if it's possible. I have just went to a new doctor today and she totally made me cry...she told me that I have to accept the fact that I have this problem and that there are no threatments what so ever that can give me the visual acuity back and also to stop the progress. I seriously doubt it. But...how can I find the best option? All the doctors tell me that it is a very bad condition, some tell me that I have 1/2 stage, some even 3. It makes no sense to me...every doctor tells me to follow their threatment and everyone has an interest (I would say money) that's not the same with mine. I can't give up...I have a life to live, I have so many dreams and I just can't give up...
Guys, can you tell me from your experiences if there is a doctor out there that really has a solution, not 100%, but 50% or 60% of succes...

Best regards,

Oana Mocan,

Romania

Hello Oana Mocan, and welcome to the forum.

I do not know what things are like in your jurisdiction, but in the Untied Kingdom we have a range of treatments available that make it possible to manage the condition, even if none of them offers a cure.

I am sure that somebody will be along in a moment who has a better idea of what may be available in Romania.

Every good wish

Andrew

Hello Andrew!

I am not going to follow a treatment in Romania so I am open to suggestions. I have friends in UK so I consider the idee of following a treatment there. I just need some advice concerning different treatments, I read all about them.

Thanks for everything,

Oana

Oana

From what you say, your keratoconus may not be too far advanced. You may want to enquire about the suitability of a whole range of treatments and strategies.

CXL (crosslinking) seeks to inhibit the progression of keratoconus.

INTACS (implants of half circles of clear plastic) may provide a restored curve to a cornea affected by keratoconus.

Contact lenses are still the most common, and in many cases a wholly sufficient, regime for keratoconus where glasses no longer provide the required correction.

There are Toric lens implants and a raft of interventions of different degrees of intensity.

Every good wish.

Andrew

I would like to know how you handled this disorder and your results...

That would actually help me more than anything,

Oana

Hi Oana,

First of all, you prescription and the information from Hungary suggest you have a mild condition. Cross linking should stop progression but you will not get any doctor giving you 100% guarantees because the procedure has only been available for the last 13 years. Absolutely no-one can definitely say this is a permanent solution, so your doctor was actually being very honest with you. However, world wide, it is generally proving to be very effective.

The INTACs are being offered as a way of restoring vision by changing the shape of your cornea and again, no guarantees can be give as to how well this would work. Your doctor again was being honest. I have seen patients who have had great success and others where they have ended up having them taken out. This is because no two people are the same and keratoconus tends to effect every one slightly differently.

However, you can have cross linking only and then wear contact lenses, which many people do very successfully. There are very many options open to you and a graft is by no means inevitable.

Lynn

Hey Lynn!

Thanks for your reply. I am wondering about something you said...do you think that the progression towards graft can't be controlled? I actually read that only 20% pacients get to that point. And I hope to do not become one of them considering the fact that I have stage 2-3. It's just so hard to get used to this impredictible situation and lack of control...

Best wishes!

Oana

Hi Oana,
You're right - only 10-20% of people with KC ever get to the stage of needing a corneal transplant. For most people, KC progresses slowly and eventually stabilises (as we were saying on another thread, the cornea naturally starts to become thicker after the age of around 40). Unfortunately, it's also rather unpredictable as to who will get to the stage of needing a graft, although a big research study suggested that it's the people whose KC is already moderate when diagnosed and which progresses quickly who are most likely to be in that group. Of course, with KC there are always exceptions to every rule!
In the UK, the guidelines for offering crosslinking is that there should be evidence of progression. Which makes sense - there are no 100% guarantees with any procedure, so jumping straight to surgical options may not be the best course if it's not clear how KC will develop in the individual.
Anne