New to the forum... And uncertain about all of this

[SwissRich]

Hello all,

I am a 31 year old male and have just today been told by an eye specialist they suspect I have corona ecstasia.

Around 2 months ago I started noticing halos around car lights at night time. It happened once and then I didn't really notice it again until around 3 weeks ago. Upon noticing the halos again I decided to visit an eye doctor.

The usual eye tests were carried out and the machine which checks your vision (where it automatically focuses a hot air balloon) had real difficulty with my right eye. The doctor checked my eyes herself and then quashed the idea that anything was wrong, instead blaming her machine. She said that my eyes were perfectly healthy, however, I was suffering with dry eyes so needed to take some drops daily. Roll on a week and the issue is still there so I visit her again, this time the machine gives a totally different reading and yet again she quashes the idea anything is wrong and says I need to take the drops for another 3 weeks or so until my vision is better. She says that if the drops haven't solved it by then, then I need new glasses because my astigmatism isn't being corrected properly.

So today I visit the optician to get new glasses and the optician does a thorough examination of my eyes. My vision is fine, with glasses it's 20-20 however my right eye shows some strange results on the topography test. She says I need to see a specialist as there could be a serious underlying issue.

A bit panicked, I decide to go to the hospital as all eye doctors are booked up. The hospital has examined my eyes and advised that I have suspected corona ecstasia. The next steps currently are that I need a thorough topography carried out by a cornea specialist and then we need to see if this is progressive or not. If it's stable they are suggesting the use of contact lenses to correct the shape. If not then I need cross linking.

I am quite scared at this stage. The doctor at the hospital said its nothing to worry about but I am not so sure. Would appreciate your thoughts on this

[Anne Klepacz]

Hello and welcome to the forum,
It's not surprising you're worried at this stage when you've had conflicting information and no definite diagnosis. There are a number of different conditions which can affect the cornea but if this does prove to be keratoconus, then you've developed it quite late (it's often diagnosed in the teens) and that means the chances are that any progression will be slow. And as you've been told, crosslinking can stop further progression and contact lenses can give better vision (though it sounds as though you're getting very good correction with glasses). So don't panic! I hope you don't have too long to wait before you can see a corneal specialist and have your mind set at rest. Do let us know what happens.

[KL90]

Hi, I'm new to this forum too. I'm 26, female and was diagnosed with KC at 16. I have fairly bad allergies, hayfever, mild asthma and have had the cross linking done.(with Keratoconus you tend to get allergies,hayfever, or asthma etc but not all do). However, because of my allergies, they didn't want to do the full procedure in case of infection, so I just had multiple drops and up rays to prematurely age my cornea to prevent it "coning" any more. It has worked wonders as in my left eye hasn't changed steepness since. I had it done on my right eye the following year and it hasn't worked as well but it has definitely slowed the KC down and I might have to possibly have the full procedure at a later date. I am able to correct my vision with (I think they're called) mini sclerol lenses (hard lenses). The cross linking for me was a stinging sensation and emotionally draining. It was sore but everyone's pain threshold is different (plus I didn't have the full procedure). I think when you/if you have the full cross linking done, you have a eye shield and it's a little more sore and you have more drops and need to protect the eye more. Having KC isn't the end of the world and I'm fairly "gone - on" patient as I can't see the top letter on the eye chart without my lenses in. However, with them, I lead a normal life like having a full time job, I work on computers, I can drive ( thought I try not to at night because of the halo effects). I'm just careful, so if my eyes start to feel dry, I put drops in and rest them when I can. Thought, I've learnt the hard way, not to push my limits, otherwise I have problems with sore eyes or infections. I hope this puts your mine at ease a little and it'd be lovely to hear your results!

[SwissRich]

I just want to say that I am sorry for not responding to both of you and your very supportive posts! thank you for that

It has been quite a journey since my first post. I have seen multiple specialists with varying opinions and I am still not yet 100% diagnosed. My most recent eye specialist visit was with Corneal specialist Theo Seiler. You may have read up about him as he was the inventor of crosslinking and it turns out he is based in Zurich. I had no idea about this prior to visiting him... Anyway... he looked at my eyes and came to the conclusion that the halo effect was not at all related to my irregular astigmatism. This in fact is caused by some circles which have appeared on the tear layer of my cornea and which could have been caused by anything e.g. dry eyes... irritant in the eyes etc. He said that these circles can be easily removed by removing a layer of the cornea with a laser, and for him are not an issue. The reason they are causing a halo effect is because they are scattering the light which in turn produces these rings around bright lights..

As for the topography of my eye. He says my right eye most certainly has an irregular astigmatism, which could potentially be the early stages Pellucid Marginal Degeneration, however, without seeing my eyes before it is hard to determine at this stage. He also mentioned that my eye could have always been this shape and it could just be the anatomy. He has advised that he needs to compare the topography from now to 3 months time and check if there has been any change and whether this is something progressive. If it is then it is most likely PMD.

So right now I am playing the waiting game and I am absolutely dreading it. i guess if it is PMD then I am lucky I had my eyes checked due to the halos and we have caught it, however, it is a scary thing to go from being 100% healthy to potentially having a degenerative chronic illness.

[Matt_Offord]

SwissRich, Good luck! This is an understandably worrying time but once you get a definitive diagnosis and plan of action, thing usually get better or at least you can terms with it. Most of us have benefited from the numerous treatments and have a normal life. Best wishes

[pellucidath]

Hi
I would like to know what is your condition now? My boyfriend seems to have the same diagnoses. His doctor said us to wait 4 or 5 months and then repeat the topography. He is 30 years old and at the last 10 years we thought he just had -2.5 astigmat. On the right eye and all the doctors all these years tell us that his eye is just a little bit lazier because he didn't treat it when he was little. The left eye is ok 20/20. Please i would like to know your condition because we are really worried. Wish you all the best!!