New to this forum. Son has KC.

[Lynn White]

Hi Jst

If a cornea is thin, then it can it can be artificially swollen for cross linking using distilled water. If it is scarred, then there is hope via a new procedure called femto pocket CXL, though this is very much early days. Either way, it is worth trying before transplant and definitely worth exploring with other opinions before giving up on it.

Lynn

[Rose]

Thank you Andrew. It certainly is good to know that there is a supportive community out there. Thanks. Rose

[GrandPaClanger]

Hi John

I had a similar experience with contact lens intolerance in my right eye after 30 years of lens wear. Mainly with Gas Permeable lenses but also Piggy backing as well (a hard lens on top of a soft one). None of this worked as my KC was so advanced (actually they classed it as Kerataglobus where the whole cornea is affected).

I had a graft in May this year. For me the decision was based on my quality of life ( or lack of). I was going to work, coming home and going to bed as i was in so much pain. Only for the same cycle to occur day after day. Whilst I found the NHS great I knew I was not getting to see the top man and the people I was seeing didn't seem to or could not make a decision. I made a private appointment with the consultant. Whilst it was money I could do without paying (and some will argue I shouldn't have to) it was well worth it to get some quality time with him. I almost went in with the attitude of I am going to ask all the questions under the sun here to get my monies worth. It was also worth it as it was in the evening so my wife could attend knowing that we were seeing someone at the top if his game . He actually told me I needed a graft in both eyes so the decision was made to do the intolerant one first.

I had reached I point in my own mind where I knew it was the right thing to do. When your son gets to that point he to will know. All you can really do is be there to support him.

The graft for me was not the end by a long way but the beginning of a new "adventure". There are still frequent hospital appointments ( I have a great employer) Daily drops to remember to take (and make sure you have ordered in). I would not say I live in fear of rejection/ infection but I am always on the look out for it (been to eye casualty a couple of times as i was not sure about something ) I have marginally better vision uncorrected but it's early days and tests prove it should be possible to get a reasonable level with glasses. I gave been back in to theatre to have the sutures adjusted. Most of all I am free from pain (it's sore at times but not painful) BUT I have a life back in the evenings.

I am not pro graft or pro private appointments but for ME it worked. As I said earlier you know yourself when it's the right thing to do.

I read countless medical articles to understand my condition ( I work in IT) so when the doctors started talking a had a good idea what they were saying. But it empowered me to ask questions and get a focused reply. From what I have read KC patients can be concidered "difficult" not in a bad way but because they are so knowledgable on their condition.

All the best to you both
Ian

[jst_at_home]

Hi everyone

I thought it worthwhile, after such a cracking response from people, that I added the next chapters.

A couple of months ago we picked up on work done by a Mr Imran Rahman who has been working on a procedure called keraflex. I contacted him. I'll leave it for people who aren't sure what keraflex is to look it up but actually I'm assuming that anyone who's reading this probably knows.

Anyway, we got our GP to refer Andrew to Mr Rahman at the Spire Fylde Coast Hospital. Aside from anything else, let me say what a genuinely nice chap we found Imran Rahman to be. That's not to knock any of the other specialists we've seen either locally or in Sheffield because they've all been really great caring people.

Andrew has an intac inserted into his right eye which is doing a fantastic job and Andrew gets to the second from bottom row of the sight chart without any correction at all. His left eye is at the other extreme.

Andrew was struggling with his left contact lens to the extent that it was on the verge of casuing damage. Mr Rahman has suggested persevering but has recommended an optometrist on the Fylde Coast who at this stage is confident he can get a good fit with a mini-scleral contact lens. He gets the first version of his lens on Friday. Mr Rahman's view is that if Andrew can both tolerate the lens and rebuild his confidence, he is prepared to do the colleagen cross-linking and he feels that this may well put off the corneal transplant, which is still the backstop. Keraflex is still a possibility but we'll leave that to one side for the moment.

One thing I hadn't understood until we met Mr. Rahman that the NHS will only do cross-linking if the corneal tissue is above a certain thickness. At 360 microns, the cornal tissue in Andrew's left eye is below the NHS limit, hence, if the contact lens is not appropriate or not working, the only treatment left is the transplant. This is how I understand it.

To some extent, I'm posting this because it explains some of what we've picked up and adds to the general knowledge base and I hope that it will be of use to other people with KC and their families.

However, I wonder if readers, especially any professionals or practitioners can give a view on the following?

I do have company medical insurance and while they have met part of the cost of Andrew's consultation with Mr Rahman, they have answered me this afternoon by saying that they would not be able to cover keraflex or corneal colleagen cross-linking as "we do not pay for treatment which is not proven to be effective or which is experimental".

I can go with the keraflex being experimental and we knew that at the beginning but is cross-linking felt to be either ineffective or experimental?

Best wishes

John

[longhoc]

Hi John

Just to answer your question about whether, given the response from the Private Medical Insurance (PMI) company whether Crosslinking is "experiemental", while I can't comment on the medical aspects and whether it would indeed be suitable for Andrew, it's worth keeping in mind that the PMIs will use every possible angle to avoid having to pay a claim. They are absolutely not a good arbiter for what is a good clinical judgement.

I've been able to assist a couple of our memebers with, ah-hem, getting their PMI to have a change of mind on paying out a benefit to cover this procedure. I've also got a couple more where the PMI concerned is playing hardball, but these are with the Financial Ombudsman Service for a ruling on whether the PMIs are treating customers fairly in how they are handling these claims.

So do let me know if you need any more advice on this one.

As for whether or not corsslinking is the right thing to do, others are more qualified than I on that one (or have stronger opinions !) so I'm sure someone else will be along shortly on that score.

Best wishes, hang on in there (and Andrew too),

Chris

[jst_at_home]

many thanks Chris, that's sound advice and a very kind offer which I may yet take you up on. I'll say the name, AXA PPP.

John

[harker]

Hi John,

A lot of practicioners - not just the NHS - don't like to perform CXL if the cornea is beyond 400 microns thick. Mostly this is because there's a risk of exposing the back of the eye to too much UV light. There's also some evidence to suggest the procedure might not work as well on thinner eyes (the small chance of losing acuity seems to increase as the cornea gets thinner). However, as Lynn explained, there are now ways of thickening the cornea for the procedure. This should solve the UV light issue, though I don't know if there's been any studies into its efficacy when compared to treating equally thin eyes the usual way.

Something else you should be bearing in mind is that your son's intac wont stop progression. I couldnt tell from your posts if you're considering cxl on both eyes, but it might be worth considering if you want to preserve the good vision.

[jst_at_home]

Thanks, this is helpful and I didn't know the reasoning for cxl not being performed on NHS where the cornea has become thin (I presume you meant under 400 microns thick?). In Andrew's case it's 360.

Our latest consultation suggests that Andrew should have another try with a contact lens to stabilise his cornea and prevent further progression. If this is successful then the consultant will perform "cross linking with accelerated form".

The intac has been in place now for 18 months and the medical opinion seems to be that Andrew's cornea has remained stable. Certainly his vision compared to where he was pre-intac and certainly compared to his left eye is nothing short of remarkable.


As an aside, the bus garage where Andrew works as an apprentice electrical engineer is called "Intack"!

John

[harker]

Hi John - glad to hear his other eye seems stable. But without wanting to be overly alarmist, stable now doesn't mean stable forever. That's not to suggest you should go into panic mode and divert all your attention from the other eye, you should just keep in mind that an intac isn't a cure for the underlying condition, even if it has improved the vision.

[jst_at_home]

That's ok, we appreciate that this is constantly changing. John