Running out of ideas.

[Luca]

Hi,

I guess there might be one or two that remember my story, well maybe not So that was err here:

viewtopic.php?f=1&t=3410

Since then I again have been to numerous doctors which all tell me, it's the astigmatism, deal with it.

So I went on my own to try out hard contact lenses. But that didn't solve anything!! With the contacts the double images might have improved a tiny bit, but the halos are the same if not even worse!!

So now what? Should I try another pair of contact lenses? Please tell me that this can be because of wrong lenses...
It depresses me that the lenses did not help one bit, same shit, as with the normal glasses!

Next week I am going to get this izonlens.com wavefront analysis done. Anyone have such glasses do they help?

I feel VERY uncomfortable at night when im outside in the city with all the light poles and stuff, if this continues there will come a point when I will have to say to myself that I can't drive at night anymore AND that is a big f... problem.

I guess I will have to go to hospital again and insist that they look into this posterior KC thing, because ive been there twice now and they are just like well naaah the orbscan is fine, and send me home looking at me like I have a damn psychological problem.


Seriously, I can't handle it, it eats me up.

Sorry for the language.

[piper]

The simple explaination is that you are simply loosing your mind...... and believe me, we HAVE ALL BEEN THERE........It took me YEARS to finally get a doctor who even began to understand that i might have something more than "bad vision". At the time I was living in a small town 'way up in the North country in the state of Michigan, USA. One of my clients directed me toward an Optham in a city many miles away. He was a capable doctor, but in that region probably saw 1-2 cases of KC per year.

The most frustrating part is, and always will be, that we cannot tell or show anyong what we see. If we say double vision that sounds workable to most anyone else. If we say we see 77 extra images, as I did, in each eye, they just don't believe it. If we say we have MANY images, all linked with smeared images like a photo shot by someone with shakey hands the think we should be able to sort out what we see and just "ignore all that other stuff"......

Well, we can sort it out and ignore the extras and smears......in any photograph when we have the time to do it....but, life does not stand still and we can't function at normal life-speed like they do.

different sorts of contacts helped me, some. I had soft ones, then hard ones, then a combo with hard centers and a soft skirt( the best). eventually, nothing helped....

Have you had the CONTOUR SCAN of the front surface of the cornea? have you seen the color images of this scan? Has the doctor taken the time to explain it to you?

What ever you do, DON'T GIVE UP. Things will get better, but not right away......patience is the hardest part of KC, and EVERYONE here will tell you that.

Welcome to the looney bin. Cheers, Piper

[Andrew MacLean]

Nehmensachen einfach, mein Freund.

As Piper says, we have all been at rock bottom; the advantage we have found in this forum is that here people at least seem to understand the daily roller coaster we are on.

Did they actually say that you do not have keratoconus?

If you do not have keratoconus then the method of managing your sight problems will be different to the strategies that may be applied to people with KC. For many people the final diagnoses comes from a laser topography being taken of the eye.

Bleiben Sie im Kontakt und informieren Sie uns, wie Sie an erhalten.

Andrew

[GarethB]

Wavefornt analysis sounds a bit like aberometry.

If they are the same it isquite painless, you look down what appears to be a wide tube with ever decreasing circles in looking at a picture.

Focus as best you can on the image in the duistance and the machine see's how light is reflected, it will then do topography. It is basically looking at more than corneal distrotions, but distortions due to the lens, retina and the rest of the eye.

Until you have that and a proper diagnoses, lenses may well be just a waste of time.

The best person to explain the process is your consultant.

[Matthew_]

Luca,
Stick with it if you can. I find that if you keep at the doctors they eventually conceed to looking at the matter seriously. I am constantly amazed that the surface of the cornea seems to be the only area of interest. Is it just because that's the easy bit? I must be missing something because these opthamologists are seriously intelligent and knowlegeable people. Is it perhaps that we don't yet have the technology to investigate the deeper layers of the cornea?
Anyhow, good luck and know at least you have our support.

[Luca]

Thank you all! I hope on wednesday they will find big red areas on their screen, because if they don't that will probably mean the inner layers of the cornea are messed up, leaving, to my knowledge a very low amount of things to cure this.

[Andrew MacLean]

Luca

You have been in our thougts over these last days. How did you get on yesterday?

Andrew

[GeorgeThe2nd]

Been there -done all- still there - but we shall never surrender..

[Luca]

Sorry to post this late

At the end of the day I didnt get it done, when I first made the appointment I was given a coupon for the wavefront thing.
When I got there I was told that the offer is outdated and I would have to pay 75eur for an in depth analysis of everything plus the wavefront.

I felt a bit fooled and steamed off. Im a student, and can't afford it right now, but I will have it done eventually and let you know if the wavefront guided glasses are of any use.

[Pat A]

Hi Luca
Been there done that, got the T-shirt!!

I haven't been posting much lately because, like you, I don't actually have KC although I have loads of similar symptoms. But I would recommend that you get the abberrometry done, because it certainly has thrown some light on my problems.
The difficulty is I guess that a lot of optoms and hospital consultants don't actually realise how bad the problem can be in reality - it is easy for them to say "it's just astigmatism" - but it isn't simple astigmatism (correct me Lynn please if I am wrong!!). And it is VERY hard to d/w, although at the end of the day that is exactly what we have to do. For example I find reading incredibly difficult, and driving at night (was) a complete no-no.
I have recently been "discharged" from my hospital clinic because they say there is nothing more they can do to help me....but I have discovered that there are people out there who can. I am trialling some new soft lenses (not sure what I am allowed to say about them at the moment ?) which actually do seem to help. No, they don't remove the problem totally but I have driven at night recently for the first time in 18 months with these lenses - and I did feel safe! So, persevere if you can, and feel free to PM me.

You are NOT going mad, and you are not imagining things! The problem is very real, but most importantly, you are not alone - and nor am I 'cos I've got you to keep me company!!

Pat