Went to Moorfields Today

[Anne B]

Hi

I'm probaly not going to make any sense now but see what you can understand.

The reason i was getting double vision with the contact lens is i have a srange shaped cone which causes a tear pool under the lens. Mr Dart called it superior KC its not very common. I have tried most lenses now and they all cause the double vision. I am going to try a soft lens as a last option. We then talked about a graft (deep m something graft) With my glasses on i can just make out the third line of the eye chart its very blurred.

do you think i should just get on with what i can see i realise alot of people have it alot worse than me? Is a graft really a option when i have 3 young children.?Help

[GarethB]

Hi Anne,

You make perfect sense, a soft lens such as Kerasoft may help, but I guess piggyback lenses might help too in reducng the tear pool. O know the rose K lenses help this, but they can pinch a bit.

To be honest you are the only one that can answer your question regarding getting on with what sight you have.

I am pro graft provided other options have been explored which you are doing.

C3R is an option prior to a graft as the data so far which I am still scrutinising shows benefits for KC. In the small number treated to date, it at least halts and in some regresses the KC. Long term results? We are still waiting, the number 4 years post op is still very small.

My only words of caution are that you refer to is deep anteria lamella keratoscopy (DALK) is a partial graft where just the top layer is replaced. To get good vision can be up to 18 months just like penetrating keretoplasty (full depth graft) so you will be relying on one eye for a while. If the graft settles early, glasses will help give good vision.


Graft of any type is a one way ticket, once done it can not be undone! It can be re-done but these are in extreme cases.

The graft is an option with three kids, but you will need hubby to help and to explain to the kids too depending on their ages.

As I said, only you can answer the questions. However you know we are all here to bounce ideas off and give food for thought.

Regards

Gareth

[Drew Radcliffe]

Hi Anne

I am blind in one eye with reduced field in the other I can read three lines down the chart.

I have chosen not to go down the graft route yet because I have too much to loose if things go wrong I have found that I have had to change the way I live a bit - I can't drive anymore but through adaption there is very little I can't do independantly. I know that I can still get a graft if my vision deteriorates to the point where I can't cope like I want to.

I guess you have read the experience of others who have had grafts so I would advise that you research the risks as best you can before going ahead and weigh them up against your own lifegoals to work out what is best for you. I know there are others on here with young children who have gone ahead with the surgery and I am sure they will share their own experiences with you.

For me choosing when to have graft has been a big decision. The consultants have already said they want to operate on numerous occasions. However following their advice I have chosen to put it off for as long as I can and I may never need one, if the surgery fails i will loose my sight and if I do nothing my vision may get progressively worse.

In my situation I think this is the best option to take. Its quite subjective decision to make and the possible outcomes from doing or not doing it have real impacts on my lifestyle. I think the hub of this has been the choice to adapt slowly rather than to risk everything in a make or break scenario.

Feel free to bounce your ideas around I know I haven't been that constructive and I probably haven't given you any answers but I have given you an insight into how somebody else in your situation has dealt with the same news.

Drew

[jayuk]

Anne

Gareth pretty much gave you a text book answer with added realism!

Not much more I could add, aside from try a scleral and also piggy backing.......then explore the DALK option...

J

[John Smith]

Anne,

John Dart does seem to know what he's talking about (he gave us a presentation at our conference last Summer) - but he is a surgeon, and surgeons by definition tend to favour surgery.

I'd certainly agree with Jay about looking at sclerals. Your entire cornea is then in a pool of "liquid lens", and you may find them really useful. DALK is certainly worth considering, but I would only look at it if you no longer get enough vision with lenses.

As for having a graft and children, the two are not mutually exclusive If your children are very young though, I'd take the precaution of wearing the eye shield when near them. The eye is very sensitive for a couple of months, and the stitches are easily broken.

As long as you're not doing too much lifting (tell hubby it's his turn!) then you should be OK for a graft. But look at sclerals first.

Best of luck,

[Anne B]

i have had sclerals put in my eyes before and it was really painful had to have anaesthetic drops to have them removed! I did'nt see john Dart today not sure who i did see today but he seemed to know his stuff.

[Andrew MacLean]

Anne

I'm with Gareth, chapter and verse.

I have heard of superior KC but you are the first person who has told me that they have it. A celebrity that I'm sure you'd trade

All the best

Andrew

[GarethB]

Anne,

On a lighter note, if you opt for the surgery, at the last count you had two hubbys to help out

At Moorfields for lenses, I think you will be hard pushed to find anyone better than Ken Pullen.

DALK is the less risk free form of graft and apparently the resulting astignatism is far less. If during the operation damage to the deeper cornea is seen, they will do a full depth graft.

The risks are mainly rejection, but this is really a small percentage, I think the confrence said less than 5% experience rejection which is reversable if caught early. Eye infections can result, just like any infection for other types of surgery.

Breaking stitches as Sweet exoerienced vcan happen, so Johns suggestion of eye shield when near the kids is a good one.

Most levels of astigmatism can be rectified with glasses and in some cases lenses.

A clinical succes is a clear cornea with good cell rejeneration and no rejection. For most of us, success can be a long wait, but good sight with glasses is what we are after.

[Anne B]

Not sure if i saw Ken pullen (slim man big bow tie) The reason he said to have DALK was i am high risk of rejection due to my atopic condition. But
warned me that i may end up having a full graft depending on the surgeons skills.

What do you mean about the astigmatism i think i have one??

Anne

[jayuk]

Anne

I dont think you would have seen Ken from what you have said.....unless of course it was a Clinic 4 CLSL appt?

The astigmatism that Gareth refers to is basically the irregular shape of the cornea....thats how KC starts out....as mild astigmatism and in alot of the cases its also diagnosed as this...its only when the cone-like shape takes over that many confirm KC...

J