What's next for me?

[jilly]

Hi everyone i'm new on here, i've been dianosed with KC about 8 months ago, but i have been trying to wear glasses for about 10 years i alway's wondered why i felt sick all the time and feli i was on a rollacoster, my options have tryed hard, soft and then normal contact lenses but no such luck so he is refering me back to the hospital, so in the meen time he's going to do me another eye test, and he's going to give me glasses with a normal lens for my left eye which is the bad one and a srong lens for the right one the goodish eye how can it help me? i do really struggle to see even typing this letter i'm sqinting like mad thanks.

[GarethB]

Hi Jilly,

Welcome to the group.

It sounds like the optom is trying to give you sound vision in pretty much just the one eye to help you cope. The glasses i got from the hospital can give reasonable vision in my left eye but do nothing for the right, things just get distorted and sitting still and people moving round me is enough to make me motion sickness. I can actually cope better with no vision correction or just correcting the left (my good eye) as far as possible. The right eye almost switches off and things can become manageable.

Does your hospital have a contact lens clinic?

There are many highstreet optoms that try their best, but because we are not their bread and butter business combined with the costs of lens fittnig kits they don't always have the full range of things at their disposal that can help us. Hospitals usually do so they might try a different type of contact lens such as hybrids (hard in the middle soft on the outside), Rose K RGP's, Kerasfoft 2 or 3, piggy back (wear a soft lens with a hard lens on top). The range of lenses available is quite large.

Without a proffessional looking at your eyes, all we can do is reel off a list of all the posibilities which may or may not be of relevence to you.

I have found optoms to be very approachable so just give him a call and ask the questions you have. I do it all the time to the optoms who post here and my local hospital.

[Andrew MacLean]

Jilly

Welcome to the forum.

I guess you have run up against one of the difficulties with which we have to live: not all lenses are suitable for all people, and (maybe) not all optometrists are adept at fitting the right lens to an eye with keratoconus.

I know that I benefit greatly from the skill and expertise of the optometrists in the hospital contact lens clinic. Even if your hospital does not have its own clinic, perhaps your ophthalmologist will refer you to the private sector optometrist that the hospital uses.

All the best. It isn't time to give up on lenses until all the options have been tried, and even then there are other treatment options for managing your condition. In the meantime, you have already found your way to this forum, so a sympathetic response is only a keystroke away.

Andrew

[jilly]

Hi thanks for all your reply's, the hospital sent me to a specialist options about 8 miles from were i live at the moment i'm there every week(good job i can drive) but last week he said my eye's are to sore and watery for contact lenses to go in so he is refuring me back to hospital, I have a 46inch television which i struggle to see very frightening.

[Andrew MacLean]

Jilly

All the best with your hospital appointment. I am sorry that your specialist optometrist has concluded that you can no longer be helped by lenses, but sometimes our eyes do become so intolerant of contact lenses that other remedies need to be sought.

Every good wish.

Andrew

[GarethB]

In 2005 I was told I had become intolerant to contact lenses due to dry eyes so we set about exploring which eye drops would best releive this. It took us about 6 months but we found Systane by Alcon worked best for me and that combined with ensuring I drank plenty of water really helped. We went from a very painful 1 - 2 hours lens wear up to 12 hours easy and where necessary 16 hours lens wear.

I have been having lens problems again but after avisit to eye casualty they said I had very dry eyes, went to see another optom who agreed and suggested an allergy, went to my GP about a sore throat I had had for months and he put that with the eye problems and concluded I definitly had an allegy to soemthing. now on anti-histamines as well as the eye drops and we seem to be back up to the 12 hour lens wear mark again.

So for me the solution once found was a relatively simple fix and I am still on my original lenses which are over 4 years old so there may well still be hope on the lens front.

Even the specialist optoms the hospitals contract out lens fitting to are unable to afford the cost of having a broad rrange of different lens types that are available to us through a hospital contact lens clinic. Your current optom may no longer be able to help, but there may well be someone else who has access to other lens options that may be available to you.

[jilly]

I think the problem also was the fact i felt really sick evertime he went near my eyes with contact lenses, and i hold my breath so he tells me i have to breath or i'll pass out, i think he's really say's oh god what have i got here.

[GarethB]

Our resident optom that post here Lynn White will tell you trouble it is for her putting lenses in my eyes.

I have a phobia of things in my eyes and it has taken a long time to get used to having lenses, but still hate it when others put lenses in my eyes.

Lynn is very good at keeping me talking and I am sure she has just whipped the lens in my eye when i least expect it!

At the hospital, they know I have this problem and make me put the lenses in when we need to do anything with them.

If you have the ability to put lenses in yourself, this might we worth doing as it reduces one of the stress factors a wee bit.