UK Keratoconus Self-Help and Support Association

Hello all


I had my 1st Visit to Hospital in 6 years yesterday

Had both eyes tested with the little picture of a ballon lifting off

They were unable to get a reading from my left eye

The consultant told me my KC had gotten worse and there appeared to be damage and scarring to the left eye . I had a detached retina about 15yrs ago

He talked about a graft or maybe laser treatment but told me a graft would mean I probably be lucky to see the 1st or 2nd line on the chart and that would be blurred . This obviously make me wonder what options I have ??

Iam due back in August to have laser/photography sessions on my left eye . They hope to confirm what if anything can be done then

Any comments or help welcome

Hi

How have you managed for the past 6 years? Have you previously had some sort of treatment that worked ok for you?

From personal experience my partner once diagnosed had some time in glasses, with regular hospital monitoring appointments. This eventually lead to RGP's which sadly did not work for them so scleral lenses were tried and apart from some rough patches (which personally I would say are only to be expected when everyday to see you have to poke bits of plasitc into your eyes) it's now been scleral lenses for about 3 or 4 years.

Grafts have also been discussed as very rocky periods were experienced work wise and it came to a point where my partner felt pushed to take what ever route would mean work would not suffer. A graft was agreed and it was hoped to be a DALK with possible PK if during surgery that was found necessary. There were no guarantees made re how things would turn out however we were advised that success wise things looked good and if nothing else a new cornea should mean a new more regular surface to fit a contact lens to and thus get better vision (some we were advised would be ok in glasses and others need no correction at all).

The consultant made it clear that a graft was the most extreme form of treatment and once done was done and in his opinion all other avenues should be exhausted first as there was no going back.

We though for some time and my partner made the decision to to wait which the consultant supported fully. Now nearly 2 years on the eye that would have been grafted is the better one of the two, as for some odd reason it suddenly started to get better vision (change in shape I expect) driving has been given up as some days visual acuity was ok and other not however, for us we manage and will consider graft later when vision is no longer acceptable,

Stress we found to have a great impact and the sheer frustration of not being able to do things that had previously not even been thought about.

What else would you like to know?

regards

scooby

Hello

Thanks for reply

"How have you managed for the past 6 years? Have you previously had some sort of treatment that worked ok for you?"

I ve just managed ... Lenses were a no go my eyes constantly streamed after countless tries myself and the optician gave up (he was very understanding)

Wearing of glasses wasnt much better no matter what was tried the vision form the left eye was always distorted ...with hindsight (ouch) the detached retina and scarring may have been the problem too.



My only concern is the statement that a graft would give little improvement as Iam unable to wear contact lens .

What options are left ??

p.s The consultant was very vague on my continued driving ?

would you be able to wear a lens after the op?

Hi

Suggest re the driving you visit the DVLA web site DVLA Web Site
and see what is detailed Medical Rules for driving

suggest you take a look at the download on
DVLA Medical at a glance

For me personally I gave us as my vision was too up and down. And I too found at the hospital they did not advise one way or the other as some times I was ok and some times not, which in itself was really inconvenient especially as it swapped and changed about so much. In this respect I filled the forms in sent them off and surrendered my licence (not hreat and took a bit of getting used to but better than a fine or a serious accident, which may or may not have been my fault however, I knew I would take the blame for if I did not meet the legal standard when tested).

As for your other comments about treatments and expected recoveries well maybe if after your next appointment you are still concerned you need to seek a second opinion. Personally it would seem to silly to go through a graft and what is infact quite major transplant surgery if things were not to get much better for you afterwards.

What I have always found about appointments is that I used to tend to come out afterwards kicking myself as I had forgotten to ask something or had been told something, didn't understand and had not asked for clarification. Maybe your consultant did not make himself clear.
As you are due to go back in a few weeks I would start to make a list of questions and if possible arrange to take someone with you who can think straight and not be totally consumed by whatever news you are given. I for one tended to stop listening when things got really bad, not intentionally it just happened!

Have the hospital tried contact lenses? Does the hospital you visit have a specialist contact lens fitting clinic which you have visited or are you already aware that you cannot tolerate any sort of lenses - maybe in 6 years things will have moved on with refards to lenses and things maybe better for you.

Hope all goes well at your next appointment.

Hello

Thanks for replies

Re- donna , ... doubtful on lens after op

I suffer from dust,pollen allergies tried many things but I just cant tolerate anything in contact with my eyes

Re- Susan Mason

I was put with hospital's Optometrist for glasses and lens who tried his best

Thank you for the links for dvla I ve made a new apointment with the a Optician as I know he will give me a straight answer on driving . If its a no Iam pretty much up a creek without a paddle as Iam self employed and need to drive to clients


Many Thanks

Ok, the up the creek without the paddle bit - just take a deep breath here and explore all options.

You mention you are self employed and I have no experience of that (I work for a rather large blue chip company however, that sometimes isn't all that good). I have support via 'Access to Work' in the form of assistance with taxi costs to get me to and from work. You have to apply for this and obviously it depends upon your vision and how much assistance you need however, I am not aware of any reasons why a self employed person would not be covered for assistance along similar lines.
Best bet here is to speak to Action for Blind People or Jobcentre Plus asking to speak to the employment retention officier or the disability employment officer.

Action for Blind People

Employment Support

They can also help with PC equipment, software, magnifiers (CCTV) and the like.

I don't know how poor your vision is, what you do for a job or how much you are currently struggling however, there is help out there if you know where to go for it.


Apologies if you already know all this - I can shut up if you like

Sadly I was not aware and really struggled for quite some time.

best wishes

Susan

PS if you have specific questions PM me if you like

Some people intolerant of RGP lenses can tolerate them if the piggy back.

That is wear a soft lens with and RGP on top. Others manage with Scleral lenses because they do not touch the cornea.

Regarding the graft, in my opinion no one can say for definite how well you will be able to see. This is because the idea of any surgical intervention is to improve the cornea shape so correction is easier post op. Since being part of the support group I know just as many people wearing contact lenses post graft as wear glasses and have excellent vision.

Depending on the level of KC, intacs might be an option. The doctors assess several criterea to decide if they are a viable option.