New (son has Keratoconus)

[GarethB]

Wait until 40 for a graft

Is this surgeon living in the dark ages? That would have meant me going 23 years before I could have a graft, 23 years being legally blind

No Had my grafts at 18 and 19 and they are 20 years old and still going strong.

Get the surgeon to look at this site and to attend some of our confrences to bring his knowledge up to date.

[cclman]

Dare I say it (see my ccl/cxl diary ) your son could have "crosslinking" that is reported to stop the decline of KC. Its worth thinking about and will not impact on him too much but may only put him off his normal routines for 3 to 6 weeks. If you can stop it- why not go for it That's of course if he accepts he has KC

[Lynn White]

Annie,

With the proviso that of course, none of us know the exact details of your son's case, I do agree with everyone here. Grafts can be done at your son's age BUT should be a last resort. I have seen people advised to have grafts because "lenses won't work" and for no other reason, only for them to go and be fitted successfully with different lens types.

If you take away for a moment the fact that he is in the UK and in the NHS system, in Europe for example, it is now commonly being accepted that the way forward with patients is cross linking (CXL) with perhaps Intacs or other forms of surgery to reduce effects of astigmatism if it is high. This regularises the cornea and also stops the KC from progressing. Generally, the eyes are easier then to fit in soft lenses or hybrids or RGPs often then fit better. In present CXL studies, no-one has gone on to need a graft over a period of 8 - 9 years. (grafting HAS happened post CXL in the general population but this was on people who were very advanced and the CXL was a last ditch affair). However, grafting is still indicated where there is dense central scarring or the cornea is very very thin. However, I don't think this sound like your sons case.

Within the UK, CXL is only slowly coming on stream in the NHS. It is available privately, as are intacs etc. As has had been said before, there are also lots of different lenses available.

Lynn

[Annie]

Thanks Rosemary for your reply. I don't know whether my son has a sympathetic GP as he has changed doctors now. We used to have a really good doctor, but when my son married he changed his GP and I don't know their practise at all. I will discuss this with him over the weekend. I went with him once to the hospital, when he went for his check up, really to get to know more about the disease. His consultant seems very knowledgable about KC, but as I know nothing he will do won't he. LOL. My son doesn't see the consultant much now but the optician (or whoever). He is the person that deals with his lenses. According to my son he says this man has a box of different lenses but none seem to fit properly. The ones he has been given now hurt his eyes and make them water all the time. This optician has said he can go back at any time, but I think my son needs to know more about his condition and then maybe ask the right questions. Also, if my son is not happy with this optician and what he is doing, how does he go about changing him?

I am going to try and find as much as I can about this problem to see if I can get him to ask the right questions. My son is really down about it all at the moment.

Regards

Annie

[cclman]

Don't wait ages on the NHS go private and get CCL as its now called but also known on here as "CXL". I'm not sure it helped me as it maybe too early to say, but it may stop his KC from getting worse. Nip it in the bud don't let it go on to get worse The whole thing only takes approx 15 mins under the laser eye gaget and then 30 mins per eye with UV light and vit B drops. what is there too lose apart from money?

P.S Did you know about CXL/CCL as a magic bullet to stop it??? you did not mention it.

[rosemary johnson]

Annie, you asked about how to change optician:
Well......
If (that's a big if) you can find a High Street optician's shop where they have staff knowledgeable about KC, one can walk in off the street and make an appointment.
Whether there is a suitable optician with KC speciality in your area, that's another matter.
There's also the matter of the cost of the lenses.
If there is either no suitabl eHigh Street practice with KC skills, or the cost is a problem, you have to go through the hospital system.
SO he'd have to change to a different hospital and a different consultant (ophthamologist - that's a doctor who specialises in eyes).
And you have to go and check in with him or her.
and then get referred to their own contact lens clinic people (optometrist - that's someone who measures eyes and fits lenses to them; generally not a doctor)
SOmetimes this is somewhere "along the corridor" in the hospital, sometimes they "contract out" the work to a local High Street optician who specialises in KC.
This system can be a pain in the butt for those of us who want/need to get to the guys who deal witht he contact lenses and have to go through the rigmarole of getting GPs to refer us to consultants and go for appointments with them to get to the person you really want to see.
But that's the NHS for you...... frustrating..... but at least, if we do have to call an ambulance, they'll ask us what the problem is and where it hurts, not whether you can afford them and where's your credit card.
Rosemary

[lars]

Lynn,
I have had my CXL combined with prk here in Greece.
It does seem to have stabilised my KC progression, though it's only 6 months since I had this operation.
So, like an expert and having seen so many KC patients, can you tell us more about the real results of this procedure?
I have read a lot of papers, they all refer that it was 100% successful but I can't really believe that.
I can say that this has been the best decision I have made in my life because I have about 75% vision with simple daily
soft lenses but I am only 24 so I am really anxious about what will happen after 5 or 10 years.
My k1 and k2 readings were about 53 and 60, so I was in an advanced level.
So, my basic question is if there is any evidence about what can happen after some years in cases like mine, or generally?

Thank you in advance

[pepepepe]

With regards to an "expiry date" for a transplant (or also known as a graft), any average quoted or even any number quoted is just that and nothing more, no one can predict how long survival will be for anyone person with any accuracy. So you will get those who do very well out of it and those who don't - its those people who do run in to trouble earlier than expected that needed to know the numbers before going in for tissue replacement in what the risks and limits (as we know it) are with this mode of treatment, so they don't ask one day needlessly "I did not know that, and if I did I would not have gone through with it"

[Annie]

Thank you for for the information that my son received yesterday. He said he was going to watch the DVD last night. I have not hear from him today yet, but he is coming round this afternoon.

We think we might have found an optictian that deals with KC. She was the very first optician that found his KC and referred him to the hospital. I rang her receptionist yesterday just to see if she would see Simon and they are ringing back today to say whether he can or not. The receptionist said they have several KC patients on their list and the optician is actually a doctor from Manchester. This gives us some kind of hope and maybe she will know more about the condition than his original consultant!

This board is great and I have learnt so much already. Although it is confusing though as to what to do next. I know my son is 31 but I don't think he understands his conditon too much. We are really hoping this doctor will be able to explain things better for him.

I know the NHS is slow and they are really busy that they don't really have much time to explain things to you.

My son has just rang me to say he has watched the video and it is great. He is bringing it round to show me now. He doesn't ming going private if he can get the proper help. He will even take out a loan if it means he can see again.

Anyway will be back again when I have watched the DVD!

Annie

[Lynn White]

lars

I'll answer you by pm as otherwise we'll be high jacking Annie's thread!

Lynn