Just had my CXL consultation

[fatar760]

Hi,

So today I had a consultation at a private clinic in London. I had KC in both eyes. Really advanced in the left and not so bad in the right.

The good news is that my right eye qualifies for CXL and I've been told I should get that done by the doctor. Although, I was rather concerned when I was told that the vision could sway to negative/negative which would mean having to fit a lens on that eye to correct it. I'm feeling I should get this op done as doing nothing hasn't slowed the progression yet :p

The big shock though was with my left eye. I guess I hadn't prepared to even discuss it but basically I was told that I now need a graft in that eye. I've always been told that having a graft is the last resort and so to now be contemplating it, at 31, when my hard lens is doing an 'ok' job, shocked me.

I guess I'm after a little advice and encouragement about what I should do. I think having the CXL in my right eye is a given, but the graft...?

[Lizb]

I understood that a graft was only really suggested when vision was no longer possible in contact lenses, either through fitting or comfort. Was the Doc suggesting he do the graft? Not sure what area you are in, but some NHS hospitals are running trials for CXL - have you looked into this before going private for the procedure?

Re CXL and vision correction - it is not unusual to need some form of vision correction after CXL (glasses or contact lenses) as all CXL can do is really slow/stop progression of KC. Do you currently need vision correction for the right eye? There is a period of hazing on the eye after CXL whilst it heals as at the end of the day it involves damaging the cornea to allow the riboflavin through. There is no reason why you cant return to your NHS clinic for your vision correction once CXL is done if you go privately for CXL and you find that you vision has deteriorated longterm - dont rush into getting vision correction immediately after the procedure as it normally takes about 6 months for the healing to complete, though there is vision a lot sooner that, and you dont want to be considering contact lenses in an eye that is still healing.

Is this the only consult you have had regarding CXL? have you considered going to another clinic to see what their recommendations are if you are unsure about what you have been told.

[imernater]

Hi , hope you dont mind me asking but did you have to pay for your consultation, I've just been on the phone to a highly advertised eye lazer surgery company that offer c3-r and T-CAT and they told me the free consultation was 150 due to me having KC

[fatar760]

Hiya,

Thank you for the replies.

Liz, I've always been told the same thing about the graft being the last resort which is why I do have a degree of doubt with the person I saw. it was said to me in such a 'routine' way that it's planted a doubt in my head. Is this man really interested in the health of my eyes or is he just trying to make a buck...

At the moment I don't wear anything in my right eye although, around 2 weeks ago, my optometrist at the NHS hospital prescribed me a hard lens to start wearing. I'm a little confused as to why the NHS are telling me to wear a hard lens and the private consultant I saw wants me to have the CXL and then wear a soft lens. I've always thought it HAD to a hard lens for KC suffers...this is certainly what I've had since I was 16 with regards to my left eye.

My fear is that as the CXL with damage my cornea before it heals that I'm goign to inevitably have to wear a lens in that eye where as at the moment I can just about (and i mean JUST) get by in life. But then i don't want to be in a position where I regret not getting the op done whilst the eye is still suitable.

I have emailed the clinic asking for their stats with regards to KC and CXL procedures they have performed.

Imernater, Yes I did have to pay for my consultation. It cost £100. Although I have seen on here another patient who went there got charged £80 and his CXL was cheaper than mine too.

I'm not sure on the protocol here but it would certainly be useful if we could openly discuss the places and doctors we had seen in order to inform others of our experiences. Sending each other PMs naming places is a rather secretive way of communication when I think what we really need is more information and more knowledge about our options.

[Anne Klepacz]

Hi Fatar,
Just to answer your question on protocol on this forum. Factual information about what is available at different clinics and costs of private consultations/procedures is fine. Reporting favourable experiences is also fine. What's problematic is posting negative comments about named individuals or clinics. The poster lays him/herself open to legal action for libel. Not only that, but legal action could also be taken against the KC Group charity as the host of this forum, which would mean the end of the charity and of this website! If the recent Twitter case is anything to go by, we would also be forced to disclose the identity of the poster of a post that was seen to be libellous. So moderators here edit any posts which could potentially cause you or us trouble.
I hope you'll understand the need for this.
Anne

[fatar760]

Thanks for that Anne,

Personally I think the more opinions and experiences we share on individuals who offer KC suffers expensive treatment the better.

In the last week I have spent £400 (and nearly got stung for a further £750) by two different clinics I've been to in search for CXL treatment. I feel that the more open we are the more chance we stand of seeing the right people and not incurring monies we shouldn't be spending. I really hate not knowing who to trust.

I don't see how this forum is different to any other. People post their opinions on matters and it's their opinions - not one necessarily represented or endorsed by the forums host. Even schools now have online forums for students to assess their teachers!

Having searched for many reviews on the places and Doctors I have seen I must say there is a staggering lack of information out there - which is a huge shame when you consider the amount of preventable treatment that now exists!

I do understand the concerns of protecting the group but as I say people express opinions here that are there own and I for one want to hear as many opinions and experiences as I possibly can before trusting my eye sight to a Dr or clinic - don't we all?