The next step?

[liam82]

Hi, I post on here quite abit, usually moaning

But Im looking for some advice. About a year ago I had crosslinking done on my left eye, and I've been unable to get a good lens sorted. I currently have a kerasoft lens, but the vision is mediocre through it, and my optician thinks its the best we'll get so has left it at that.
It actually impairs my vision to some degree as it makes it more blurry as my brain cant get both eyes to work together. So I dont wear it very much.

My right eye has always been okay though, with the eye consultant convinced it wouldnt get any worse. But it has been slowly, and Ive noticed this week- everything feels more blurry and my right everything just looks wrong. This week has been a real struggle as a result.

So my question is- where do I go next? My optician has been great, but has kind of left it with this one contact lens.

Are there opticians who specialise in KC anywhere in the country? What can I do?

Im worried, particuarly as Im going to florida at the end of the year and dont want KC to ruin what is the holiday of a lifetime for me and my girlfriend.

Im just becoming more and more depressed, as there doesnt seem to be anything else to do. Im rarely going out anymore, am withdrawing from seeing my friends, and I pretty much just come in from work after getting through the day and go to bed.
I cant go to the cinema or watch tv, or play on my xbox anymore as its so uncomfortable for my eyes.

Its ruining my life now.

[longhoc]

Hi Liam

Sorry that things seem stacked against you right now. I won't patronise with the usual "cheer up, it's not so bad" kind of response because I know that with Keratoconus, you get your share of bad days, bad weeks or even bad months. If it's more than the "months" bit, let us know, there's a time to just try and work things out yourself and there's a time when you need more than that. For me, it is usually only the odd bad hour or so and I can become a little more objective about things, but on occasions when I'm tired or things aren't going my way, that down feeling at the end of the day can be hard to shake off. Try not to beat yourself up though, I think that now and then you have to stop, take a step back and hold still. My hunch is that those times are prompted by our inner self forcing us to stop attempting all the coping mechanisms we practice and really explore our thoughts away from all the usual distractions (TV, computer, people or whatever). So those incidences where none of the standard day-to-day activates "works" for us any more might be a blessing in disguise. If it is indeed a blessing, it is though a very good disguise.

That all said, it is probably an excellent idea to do what you're doing -- see what other treatment options might be available. I'll send you a PM with some thoughts.

Cheers

Chris

[liam82]

Hi longhoc, thanks for your response and your pm - really appreciate that

Its just been a bad week. My reliance on my good right eye is coming crashing down, as the lens on my left eye doesnt work very well and now my right eye is struggling the impact of KC is much much more noticeable.

Normally, it only has a very minimal effect as its only really the ghosting thats noticeable on certain things. But now, everything suddenly seems wrong.

Thanks for your post, its definitely made me think and cheered me up

[Jezzafletcher]

Hi Liam - Chris speaks many a wise word in response to your post. It is a battle when you have KC & that's the top and bottom of it. I suspect (& now I am feeling really old!!!) that I am approaching being 20 years older than you. Whilst everyone is different my KC is pretty severe. I have done various treatments like lenses, I have had a graft, Keratotomy (or something like that) & now awaiting cataract surgery. I have a family, work full time in a responsible job, have a house blah blah. The only outward noticeable difference to being a stereotype family is we only have 1 car as I had to stop driving 7+ years ago! I think I wrote on another post a few weeks ago that I am sure Ronan Keeting wrote "Life is a Rollercoaster" for people with KC, because it is just that. I often look on this site & see how some days emotionally we seem fine and others we don't. I don't think that is unique to KC - I am sure it happens to most people who have a diagnosed condition which affects them to some degree. I know the day to day variability of KC is very demanding & requires much fortitude and resilience. It just absolutely floors me when like last night I was cooking and had to ask for help reading a packet of rice - earlier in the day when I had been shopping and bought it I had had no trouble reading it!!!
Most of the time I find humour is the best way - it's either that or humiliation... When I laugh with people about the scrapes I get into it is so much easier for all of us. It isn't always easy when you get into the wrong waiting car in the dark at work, or ignoring people you know or worse still approaching those you don't know whilst being convinced that you do
know them!!!!

The way I look at it is I am fiercely proud of what I have achieved and even though my vision is really quite poor now I could still see the sunshine last week (which I loved) even though it did result in me walking like Basil Faulty - convinced that every shadow was a kerbstone or step!
Stick with it Liam - Florida sounds fab. Don't take it out on your G/F - always happy to get a private message if you want to rant, moan or ask user ions.
Jez

[Jezzafletcher]

Ooooops -- I have no idea whet "user ions" came from... Should be "questions" lol

[liam82]

Thanks for that jezza:)

Theres some wonderful advice in there. My gf's been great, though most of the time i dont talk about KC with her or anyone at all. I just bottle it up.

I guess alot of us do, and come here instead.


I think im going to end in accuvision soon, and enquire about tcat.

My right eye is pretty much my vision, and the KC is having a serious impact on it now.

Ive given up on getting a lens for the left eye, its been 8 months and its not worked.

So if the tcay could fix my right eye, or at least make it easy to get a contact lens then great. The big worry is cost, with my holiday coming up:(

[EVELYNR28]

I had both of my eyes cross linked at Acuvision in Leeds last year and I they fitted me with Kerasoft lenses post treatment - I go every six months for scans and check-ups. I get my kerasoft lenses through the NHS. I have found Acuvision to be excellent

[epik]

Hi Liam,

I wonder if you have examined with your surgeon the idea of treating the cross-linked eye through the t-PRK laser method, in order to reshape the cornea...

In the very near future, almost all vision KC problems will be resolved by the use of specific Implantable Contact Lenses. It is a matter of time....

epik

[liam82]

Hi Liam,

I wonder if you have examined with your surgeon the idea of treating the cross-linked eye through the t-PRK laser method, in order to reshape the cornea...

In the very near future, almost all vision KC problems will be resolved by the use of specific Implantable Contact Lenses. It is a matter of time....

epik

Sadly, my left eye is too shallow (or something like that) to have an implantable contact lens. It has to -7 something or other, and it was (last time I had it checked) - 5 so it was ruled out.

I am starting to look into t-prk as I cannot get good vision with contacts in my left eye.

[epik]

Liam, are you sure that the new technologies of the surgically implanted lenses (artisan lenses, STAAR ICLs, etc) cannot work for you?

epik