help!

[beckie nolan]

This is my first time to this forum and i need some help or advise!!
I was diagnosed just over a year ago and so far i have had soft lenses and gas permiable but i cant get on with either! i now have a hospital appointment on the 28th and am unsure of what questions to ask about other options etc i would be realy grateful if anyone could give me any suggestions!

[GarethB]

Beckie,

Welcome to the forum.

Is this your first visit to the hospital?

Was it a highstreet opto that tried lenses?

Reason I ask is that there are loads of lens options for KC which unfortunatly are not available at all hospitals.

There are many styles of RGP lenses, some are more comfortable than others depending on your level of KC. What type of soft lenses did you try?

When you say you could not get on with lenses, what were the problems you were having.

I know I have not goven any questions for you to ask, but first we need to know a little of what yu have been through and where you are at now. Sorry to ask personal information, we on the forum like to give the best answer possible based on everyones needs.

Regards

Gareth

[beckie nolan]

hi Gareth,
This will be my second visit to the hospital.i went for an eye test in my local opticians as i noticed that my eyesight had deteriorated and that i didnt feel safe driving as i couldnt judge distances very well!
i went private and was diagnosed with KC the nhs waiting list was over 9 months long!
My first lenses were small gas permiable ones but i found them to painful to wear and my eyes streamed so much that i couldnt see out of them, i was then given soft edged lenses with a hard lens in the middle they were about the size of a 10p i didnt find my vision was hugely improved wearing these, these were all supplied by an contact lens specialist on the nhs.
I then decided to pay private again as i wasnt happy with the lens man i was with, there i had the contours of my eyes measured with lasers and put on computer to show how steep my corneas were, i was then told i could have gas permiable lenses again but that this time they would be much better as they would be taylored to fit my eye anf that at best i would be able to regain about 60% vision in my right eye and around 90% in my left eye but that was sept 06 and i feel they have got worse again since then,but again i have suffered the same problems itching of the eye, eyes constantly streeming and swelling so i cant get any of the benefits of wearing them ie sight!!
i have tried and tried to build my time up but it gets no better!
i havent ben able to drive for the last 8 months and feel that my independance is dissapearing!!
so far the only options i have been told about are lenses which is a bit worrying as i cant seem to wear them!

[GarethB]

Beckie,

The bit that stands out to me is itchy eyes which many of us with KC have and it is a sign of dry eye as is eye watering. this same condition resulted in me having an alergic reaction to my lenses in 2005 and wearing lenses for 1 to 2 hours was really painful. We tried new lenses and all sorts until someone mentioned here about KC and dry eyes, so I asked the optom if I had dry eyes too. On closer investigation it was confirmed so the next thing was to find what worked best at managing the dry eye too. The key for the optom was when I said if i stick the ned of my little finger in the tear duct I get a jelly goo on the end. That he said showed that the fatty bit of tears was being produced and the tears were very watery so that was OK which meant the surfactant that makes the fatty comonent flow in the tears and lubricate our eyes was missing.

After trying many eye drops I found Systane by Alcon worked best, but we are all different and i know many this fails to work, but they use other drops that were useless to me. Had to use the drops every 2 hours which made for comfortable lens wear, but could not better three without removing lenses for an eye drop top up and putting lenses back. Slight diet change, cut out loads caffeine, reduced the chocolate bars from 10 to 2 per day, only 2 cups coffee, no juice drinks, eat the whole fruit instead and drink at least 2 litres of watre per day. This with the eye drops took 3 months to get the full benefit. Now I only use the drops twice per day, before lenses go in and after and I get a really comfortable 12 hours lens wear.

Contact lens solutions make a difference too, there is only one type that do not aggregate my eyes and i need pH balanced saline to rinse lenses designed for sensitive eyes. I know others that after cleaning lenses store them in the conditioning solution, but before putting them in have to rinse this of with preservative free saline.

It could be the lenses are fine, but the dry eye is making them uncomfortable.

have a look at Optems with an interest in KC, one of these may be able to help further too if you have lost confidence with the people you have seen so far.

[Andrew MacLean]

It may be that your "fit" is changing. The general approach to KC is to do the least invasive thing first: and the least invasive is the fitting of contact lenses.

With lenses they usually try the least expensive first (RGP corneals). Within this general catefory there are various sorts of lens. At one time I had Rose K lenses, and these were really posh variations of the RGP theme.

After RGP's there are other options: a whole raft of them.

My favourite lens was my scleral, although it looked a bit scary when I first saw it. I had been used to tiny RGP's and now I was having to try to put a huge thing into my eye. However, it was very comfortable.

When all lenses have failed there are various surgical options.

So, as I said in large friendly letters above, Nil Desparandum.

Andrew

[Sweet]

Beckie,

Hello there! Just wanted to drop in and say not to worry too much which i know is easier said than done! There are many different types of lenses available so hopefully the hospital appointment will be able to sort something out.

It takes a lot of time and patience to get lenses fitted with KC and then just when you think you have one and it is ok your eye changes again and the lens needs refitting! You will get there and you can find something which will help you.

Let us know how you get on at your appointment. All i would suggest when you go is that you need them to be honest with you and try to find out why the lenses didn't help you. Listen and ask them to explain anything which you don't understand.

Best of luck!

[beckie nolan]

thanks very much for all your suggestions i will put these to these to the them at my appointment and see if i det any sense!
many thanks
beckie

[beckie nolan]

hi everyone!

i had my hospital appointment yesterday and had a bit of a shock after 2 ops looking into my eyes they have decided that the time has come for me to have a transplant on the right eye! not what i was expecting! very very nervous at the mo but am waiting to hear back from manchester hospital as they have organised an appointment for me there to discuss the transplant, this is the first time i have ever heard of manchester in regards to KC and would be realy grateful if anyone has any experiance of this hospital or of transplants!
im still in shock i think as this has come a bit out of the blue!

many thanks
beckie

[GarethB]

Beckie,

Can not comment on Manchester, but from a graft perspective, it is not all that bad surgery wise.

I have had two grafts and they are both nearly 20 years old, the grafts themselves are the healthiest part of my eyes.

There are two types of grafts;

Penetrating Keratoplasty (PK) where all the corneal layers are replaced. Carries highest risk of rejection but that is in only a small percentage. Most are reversable if caught earlier. The whole op takes about 1 - 2 hours. Your eye will feel sore afterwards and photophobic, but that usualy goes away after a week or two. For vision to come back and it will probably need some form of correction with glasses or lenses can take from 6 - 24 months depending on your healing ability and the skill of the surgeon.

Deep Anterior Lamella Keratoplasty(DALK); this is where only the top two layers are replaced. This carries far less risk of rejection than a PK graft because you retain the innner most layer of the cornea which is the usual cause of rejection. If there is deep scaring when the DALK is being performed, it can easily be turned into a PK graft. The DALK takes 2 - 3 hours beacuse of the time needed to sperate the vareous layers of cornea. Recovery here until sight correction is 12 - 24 months.

In most cases for both, I think sutures are completely removed at about the 12 month mark. Pereodically before then sutures get removed to control any post op astigmatism and keep it as small as possible.

It is scary and despite that, most people come out of hospital wondering what the fuss was all about!

Take it one step at a time and ask us and the doctorsas many questions as you feel fit.

[Andrew MacLean]

Beckie

If it is Manchester royal Eye Hospital you are in very good hands.

All the best.

Andrew