New (son has Keratoconus)

[Annie]

Hi

I wonder if anyone can help me or should I say my son. My son, who is now 31, has been diagnosed with Keratoconus for several years now. He was in denial at first about wearing contacts and struggled along. Anyway to cut a long story short, he eventually started wearing his contact lenses. He has been wearing them for a couple of years, but about a couple of months ago, one started hurting his eye and it had a chip on it. His optictian at the hospital said he couldn't wear it anyway because his eye is changing shape. Now, he keeps going back for new lenses but they don't seem to get one to fit him. They have now given him another one to try, but he says his eye hurts really bad and his eyes are watering. He now doens't know whether to try and get a second opinion from another hospital or what. He seems to be at his wits end and doesn't know what to do. I have just found this support group by browsing and I think it might do him good to know there are other people out there with the same problem. should he go back to see his consultant or should he try to go for a second opinion? He is frightened of losing his job now, he is a motor mechanic and says it is getting harder to see by the day. Does anyone have any suggestions please?

Regards

Annie

[rosemary johnson]

Hallo Annie, and welcome to the group.
Very sorry to hear about your son's problems - best wishes to him and hope he gets something sorted out soon.
YOu don't say which hospital it is he is going to ..... though maybe that's as well.
One thing he should do is to ask questions about what the problem is. It could be that, after a period of stability, his KC has started to advance rapidly, and the optician is trying to hit a moving target.
It could be that he has just advanced to a very odd shape so is one of us who is just hard to fit. or it could be he breaks all the rules - the optician thinks it fits well, but his eyes just don't like what should be fine. It might be that something that looks "wrong" by all the rule books will actually work - once they find what that is!
ANother question is: what type(s) of lenses are they trying? I'm guessing he first had hard corneal lenses - about 8mm diameter, made of a rigid gas permeabble (RGP) plastic. If so, are the ones they are trying for him now just different fitting of these corneal lenses? Or are they trying different types altogether?
There are many different sorts of lenses these days - special KC soft lenses, comination hard centre/soft skirt lenses, limbic lenses, plus the old stalwart of scleral lenses still do many of us proud. ANd then is the "piggybacking" method - wearing a soft lens under a hard lens to act as a cushion.
If his current optician is trying ots of these possibilities, it may be a question of it taking a while to hit onthe bestoption - by trial and error if you like.
On the other hand, if he is only getting slightly different shapes of RGP corneal lenses, it might well be worth asking to try other types - and if his current optician does not have the wherewithall to do this, asking to see someone who can.
As regards work: he might like to try asking if there any low vision aids that migth help - for example, magnifiers (like a large square one mounted on an anglepoise, not the Sherlock HOlmes type necessarily!) or, if he has to work under the bonnet in gloomy hangars, would a personal spotlight help? - maybe ask local branches, if there are any, of the Partially-Sighted Society, Action FOr Blind People or the RNIB. Or the Disability Employment Advisor at the JOb Centre (or whatever it's called now10 - no, you don'thave to be unemployed to ask for their help.
two other things to check are: does he get dry and dusty eyes (lubricating eye drops may help - systane, celluvisc or even a tube of saline); and might he have developed an allergy to a contact lens solution (or a preservative in a solution) - a change might help, and whatever cleaner you use, always rinse it off thoroughly.
Good luck to you both, and do let us know how you get on.
Roseamry

[GarethB]

Fitting a lens is a laboreous process and there are many types of lenses and finding the right one can take time.

I have been going through a similar process since late July and only now do we think we are getting somewhere.

First thing is KC is a recognised disability adn employers must first make reasonable adjustments before they can consider removing an emplyee. My local garage a few years back had the situation the chief technician was having trouble seeing aftre an operation for a barain tumour. They put him on the front desk booking the work in and answering custome enquieries while things got better. He's now back to his old and you'd never know there was a problem.

If he has a sympathetic employer like mine, when I had major problems 4 years ago, we agreed that I should take sick leave for as long as necessary to concentrate on getting my vision sorted. It worked well for both of us.

My hobby is cars and I do alot of work on friends cars prepearing them for competition and I have actually found I can do some things better without being able to see what I am doing. Obveously I don't have the engine running at the time I work on it.

Go to the Home page and contacts and register your details with Anne Klepaz, you and your son will then get our regular mailings and a load of information that yuo may well find useful.

Regards

Gareth

[Lynn White]

Hi Annie!

Its not that simple to get another opinion from another hospital. You don't say where you are, but generally, in most places, there are only a few hospitals that specialise in keratoconus/specialist contact lens clinics. So trying to go somewhere else may only delay things even more.

It does sound as if they are trying to fit him with Rigid Gas Permeable lenses and that his eyes have changed in sensitivity, so that they are difficult to wear. As has been pointed out, there are a lot of other types of lenses that can be tried. Not all types of lenses are available in any given hospital department and cost can be an issue.

If your son wants a second opinion, then we have a list of optometrists who are KC friendly and fit contact lenses here. If he can find some near to where he lives, he can then explore alternatives. One thing about community optometrists is that they can take time to explain things more - hospital clinics tend to be a bit frenetic!

There are lots of options out there and I encourage you to try and get your son to come here himself and interact with the members. There is a wealth of experience here second to none!

Lynn

[pepepepe]

Annie,

If your son feels that its getting harder to see by the day, has the progression of his KC been recorded ? and if its shown to be progressing have you thought about the CXL treatment ?

For your son I would get a second opinion from a private consultant (an Eye Dr)

Best of luck

Pepe

[Annie]

Thank you everyone for your advice. My son certainly has a lot to learn from this board. He hasn't been able to get on himself yet, but I will be showing him how too this week.

We live in Warrington, so I don't know if anyone else here has been there. I don't know whether you can mention doctors etc here on this board. I belong to a support group myself for a different problem, and you can't mention doctors names on that one.

MY son has only been given the rigid lens and his consultant has said he can't have the corneal graft until he is at least 40 as it is only done once and only lasts about 10-15 years. He had been offered nothing else or given any advice whatsoever. I have emailed Anne with his details.

Simon is now thinking about paying private to see someone but it is knowing who is experienced in this condition.

regards

Annie

[Anne Klepacz]

Annie
More information is on its way to your son. As we've all said, although rgps are usually the first lenses that are tried, they are by no means the only lens option and sclerals, piggy backing or specialist KC soft lenses may well prove more comfortable. Some people have also done well with Intacs (rings implanted in to the cornea to improve the shape) which are offered at St Pauls in Liverpool. Corneal transplants are viewed as the 'last resort' when all the other options have been exhausted, but there are plenty of people who have had transplants a lot earlier than 40 and also plenty of people (including me!) whose transplants are 20, 30 or even 40 years old.
Anne

[Annie]

Hi Anne

Thanks for the reply. what is a graft? I have seen several posts mentioning grafts, is this not a corneal transplant? As you can see I am new to all this and I am trying to get as much info as I can. Thank you for sending Simon some info, I haven't seen him today but he is coming round this week as we are all going away together at the weekend.

Anne

[Anne Klepacz]

Sorry! Yes, corneal transplant = corneal graft, though transplant is the correct medical term.
Anne

[rosemary johnson]

Crumbs, Annie - that doesn't sound too good!
Your son should certainly be offered more possibilities than that - or if they are not suitable, should have an explanation why.
The "general practice" seems to be that if you want to wax lyrical about a practitioner, no-one will object. However, if you have critical comments, keep them anonymous.
I think you are doing right so far......!
Certainly. once a graft (shorter to type than transplant......!) has been done, it cannot be un-done. Transplant surgery is not without its risks, and there is not an unlimited supply of donated material. thogh having said that, there are people who had grafts in their teens or early 20s and never looked back (as it were!).
Does your son have a sympathetic GP? - all referrals on NHS to hospitals have to be done through a GP, but GPs are not restrcted tot he nearest one now. A chat with his GP about other options for being referred elsewhere, where there may be more of a KC speciality.
GOod luck.
Rosemary