With hindsight, what questions would you have asked?

[JuliaF]

Hi All,
Hope you are all doing ok with this neverending winter-time

My son has KC and has an appointment in March (his first one) to see a consultant at Queens Medical Centre Nottingham about it.
He has asked me to go with him as he feels fazed in medical scenarios and I'm not afraid to ask questions . Obviously I want him to get the very most out of this appointment so aim to be well prepared with queries written down.

I've read lots on here and other places about KC and there certainly is a lot I could ask. To help me filter down to the key important things for a first appointment, I wonder if you are able to inform my thinking on this please?

With the benefit of hindsight, what in your opinion are the most useful/helpful key questions I should be asking at this first appointment? For instance, should we be enquiring what thickness his corneas are?

I'd be really interested to know what your views are if you have a minute to share.....Thankyou. Julia

[space_cadet]

yes to asking thickness of cornea's then you can compare them per time he is seen at hospitalto monitor chnges yourself as often doctors talk in far too much jargon
x

[Andrew MacLean]

1 How severe is my son's keratoconus?
2 (As Lea says) What is his current corneal thickness?
3 Are there any non-graft surgical options available that would either mitigate his condition or slow its progression?
4 What is the prognosis for my son's sight for the next five years a) if he has a surgical intervention and b) if he does not?
5 What is the prospect of my son enjoying good sight with or without lenses and without any surgical intervention?
6 What are the clinical indicators for a cornea graft?
7 What would happen if my son did not have a graft at this stage?

All of these (except 2) are questions that I did ask at different stages, and I got very full and helpful answers. When we were discussing a graft my surgeon let me go back to the waiting room with my notepad to think of other issues I wanted to explore. This happened three times before I agreed to let him go ahead. That was the same day that I agreed to let him register me as a blind person.

Andrew

[Lizb]

I would also find some of your own information regarding crosslinking (CXL) and intacs prior to the appointment and ask whether either of these would be available through your NHS hospital, and if your son is a suitable candidate for the procedures. CXL is still in trial stages, so dont be surprised if that isnt available, however Intacs are available on the NHS if you are a suitable candidate. Both procedures require a cornea to be a certain thickness (if below this then the cornea is too thin for the procedures).
Information sheets are available on here (somewhere) about both procedures.

[JuliaF]

Thanks all of you especially Andrew for the helpful list of questions.
Are you able to see now Andrew? The bit about being registered blind hit very hard - I'm so scared this will happen to my son

Re 'how serious is the KC' question. Please can anyone tell me how this is 'scored'? Is there some kind of scale or similar? Otherwise how can the severity or indeed mildness of it be quantified? Thanks.

The other thing is I've read about having the eyes 'mapped'. Is this something I ought to ask about?

Anyone got a magic wand? Sure feel I could use one right now.

[Andrew MacLean]

Yes, I now have very good vision. In Scotland people who are registered blind get a free travel pass; covers everything, bus, train, ferry, underground ...

When I beat the threshold for registration I took ENORMOUS pleasure in sending my pass back. My driving license has been restored and we bought a little hard top convertible as a wee celebration.

Being registered blind does bring all sorts of benefits, and if your son ever makes the indicators he should not hesitate. It is not an acknowledgement of a permanent condition. That said, I deliberately waited until I was legally blind before agreeing to surgery.

Andrew

[Anne Klepacz]

Hi Julia
As I've just said on another thread, it's important to remember that only around 1 in 10 of people with KC will ever get to the stage of needing a corneal transplant. And a lot of those will still have a 'better' eye which gives them enough vision to lead a relatively normal life. So only a few of our members have ever got to the stage of being registered partially sighted or blind while they were waiting for a graft. Although I did have transplants on both eyes over 20 years ago now, I was able to carry on working full time all the way through, with just time off for work for post graft recovery. And most people with KC manage pretty well with contact lenses, even if they are a pain at times! It's great that you're supporting your son - one of the hardest things with KC can be how difficult it is to explain to other people what our vision is like with and without lenses. All the best for the appointment.
Anne