How long does it take?

[Sallyuk]

Hi all, just wanted to know how long it takes to get lenses.
I was diagnosed early last year with KC, waited 4 months to see the consultant, who said although I would need lenses I really should be so thankful as my KC wasn't that bad! He referred me to a the optician for fitting, another 2 month wait. Since then I have had fitting after unsuccessful fitting, each one approximately one month apart. My optician is lovely but frustrated with my eyes, although not as frustrated as me, I think! It would appear that the KC is being complicated by opposing astigmatism in both eyes and severe sensitivity. He has been trying some new soft lenses but got the original size fitting with hard lenses - oh my God! How do you guys wear them? It was like having shards of glass shoved in my eyes! Anyway we are no further on than when we started, he can't get my vision any better than it is a present with my glasses. That's scary cos everthing is completely out of focus with my right eye and my light sensitivity is getting much worse. I get the feeling I am going cross-eyed as my right eye seems to focus across my nose! Driving is a disaster, especially at night, I have real problems with right hand bends as I loose my depth perception - on a positive note the fireworks of light I see at night are very pretty!
I am coming to the end of my 2nd year of a 3 year health degree course and I am struggling with my assignments, I am constantly tired and my eyes ache sooooo much. The right one goes really hard every so often and feels like it's going to pop!
Please tell me it will be sorted soon as I am running out of energy and patients. He did say that we have to exhaust all avenues first before thinking of a graft but that was a possibility given the problems. That scares me too as starting out in a new profession, especially health, it is not good to take time out without it having big repercussions.

Hoping to hear from anyone!

Sally

[jayuk]

Hi Sally

What is your vision with glasses? I wouldnt even begin to look at Grafts if you have just been diagnosed and have Mild KC...

The Optician you are using; is it Private or NHS?..You mentioned that you got reffered to another one............so just trying to figure out why its takes you one month apart?

Also, does he/she have experience in fitting KC patients? This is a VERY big requirement for us. Whilst there are many Private Opticians not many have experience in fitting KC patients and thus the trial fitting can be tiresome!

If you arebeing seen in a Hospital than I I am still surprised you have gone through soo many fitings.........the soft lenses you refer to are they for KC?....eg Kerasoft etc?.........

What is the current state? as in are you waiting to be seen again?

[Sallyuk]

I don't know what the figures are for my glasses!

The chap I see is very up on KC, he is under the NHS but also runs his own private practise and usually only see's KC patients. The lenses are for KC they are a recent design of soft lens, as I understand it he helped to design them.

The reason I have had so many fittings is that I need one prescription for the astigmatism and one for the KC, the problem being the lenses can't accommodate both prescriptions! Also the prescription seems slightly different each time probably due to more or less eye strain just prior to the visit.

My optician works in 3 different hospitals as well as his own practise so only spends limited time in each, this means appointments are at a premium. Then of course the lenses have to be made up and posted to him before I can have my next appointment. I am due to see him again at the end of the month (28/06/05).

I currently wear glasses but these are no longer suitable as the vision in my right eye is very poor. Although the KC is relatively mild the type and level of my astigmatism makes the overall affect similar to a severe KC. That coupled with the fact that even with lenses and glasses my vision remains the same. This is why I may need the graft.

Sally

[GarethB]

Hi Sallyuk,

Sounds like you might be one of those people who need lenses and glasses together. The lens will correct the KC which is harder to correct than normal astigmatism and the glasses to correct for everything else.

Just a thought.

Gareth

[jayuk]

In all honesty; if I was in your shoes Iwould seek a second opinion and a fitting from another Optometrist........thats a sure stressful position you are currently in.......but than again what Gareth said makes sense, and I have done that also..wearing glasses over a scleral............whatever works..to get the vision i guess

[Sallyuk]

Thanks for the advice Gareth and Jayuk.

I had toyed with the idea of a second opinion but felt guilty about it! However time is pressing on and I need a solution sooner rather than later so I may just venture one afterall. At the moment I am soooooo busy with assignments and practice based exams that I am constantly tired and my eyes are killing me.

However, today has been very positive and I feel a lot more happy after speaking to the disabilities officer at the university about the problems I am having. She is going to sort out quite a lot of things for me until I get some sort of solution to my eyes. She was very understanding and is able to keep the specific information about the KC confidential from my tutors, otherwise I will probably have had to kiss my new career goodbye.

Thanks again for all the support.

Sallyuk

[GarethB]

Why keep KC a secret and blow your career goodbye?

It is important to let tutors know so that you can larger exam papers to help you read the questions with less eye strain. Extra time may be necessary and today, if writting is difficult a scribe can be assigned to write your answers as you dictate them. The fact you are having trouble seeing notes to help revise should also be taken into account. I may be reading too much into what you have posted so far, but I can asure you that you will kick yourself if you get a lower class degree than you know you are capable of just for hiding a disability. If hayfever sufferes can get consideration for a medical condition and asthmatics too for the affect the stress of exams have on their condition why can't you with a recognised sight disability?

When you start work, you could well have a medical and if KC is not declared at the point of application, the discovery of it in a medical may be reason to turn you down for a job. Not because it will affect the work you do, but because you have not declared a medical condition. Never heard of this being the case for KC, but have known some employers say this for other medical conditions. Honesty is the best policy and there are groups such as Action for the Blind, RNIB and of course the support group that would be able to provide further assistance and advice to your disabilities and careers people at Uni.

When I was at Uni (Graduated 1993), my tutors knew about my KC and I got an honours degree in Environmental Biology. At this point I was still recovering from my grafts and so could not see anything down a microscope unless it was hooked up to a video camera and monitor! When I started, I had a white stick and registerd partially sighted. Sight improved and it has never affected work until now, but that is down to the type of drugs and chemicals I work with now and how my KC has developed. Been at the same place 5 years, last year KC took a turn for the worst but still do same thing, just less laboratory work and more co-ordination. Still prepare slides for microscopy work, just now I have to get someone else to analyse the slide because I see the reflection of my lenses and the crud that builds up on them!

KC is a disability we must accept and not hide, there is so many things now that can be done to help us progress in our choosen careers. The main thing that to date I might not be able to satisfactorily overcome is to keep enough site in the day to continue my hobby of motor racing. The concern is the lenses might dislodge causing me to have a crash so currently my Motor Sport Association license has been suspended but the DVLA are fine.

Give us a bit more info if you wish and the people here may be able to help further.