Keratoconus

Corvo

Shane732 wrote: »

Decided I better update my status here.

Since I've posted here last I've been to the Eye & Hear for a second opinion on the left eye. Basically I'm now told that there is absolutely no hope in terms of doing any procedure on the eye other than a cornea transplant.

Thankfully, Nina from Dixon Hempenstall has managed to get a lens that's almost getting me normal vision in my left eye! The lens is comfortable and is giving me good vision.

I would urge any amount of caution to people having anything other than cross linking.

Keep us updated. Probably end up that way myself

glineli

glineli wrote: »

Cxl done today. Dr Cummings was very happy with the shape so he is very confident. A good bit of pain and discomfort but thats to be expected. Even without a lens i can see improvement. the staff are brilliant.

Eye is a little sore today. It looks a little swollen but overall not too bad. Back up wednesday so hopeful there is a good shape to allow me to wear soft contacts. Sonce thursday there has defo been an improvement.

S.M.B.

I went to that Alternative Procedures to Treat Kerataconus presentation a few weeks ago in London and it was rather insightful.

It seems like they may not be too far away from the day where you can be diagnosed with KC, be brought into a room for instant CXL and then walk out the door 30 minutes later.

Fascinating stuff and a huge difference from when I was first diagnosed nearly 15 years ago.

Shane732

glineli wrote: »

Eye is a little sore today. It looks a little swollen but overall not too bad. Back up wednesday so hopeful there is a good shape to allow me to wear soft contacts. Sonce thursday there has defo been an improvement.

What treatment did you have? Did you have crosslinking or crosslinking plus something else?

Shane732

S.M.B. wrote: »

I went to that Alternative Procedures to Treat Kerataconus presentation a few weeks ago in London and it was rather insightful.

It seems like they may not be too far away from the day where you can be diagnosed with KC, be brought into a room for instant CXL and then walk out the door 30 minutes later.

Fascinating stuff and a huge difference from when I was first diagnosed nearly 15 years ago.

What treatment have you had over the years?

The improvements appear to be immense but everything is only very new.

I've been told by the Wellington Eye clinic that all Keraflex suffers have deteriorated since they had the procedure.

tippman56

how can you comment here without unwittingly giving advice?

S.M.B.

Shane732 wrote: »

What treatment have you had over the years?

The improvements appear to be immense but everything is only very new.

I've been told by the Wellington Eye clinic that all Keraflex suffers have deteriorated since they had the procedure.

I haven't had a single thing done. Still managing to get by after going through every contact lens type known to man. Having a bespoke perspex scleral lens fitted on Thursday after I had a mould of my eye taken a few months ago. A long tedious process awaits me.

I'd still have my concerns about these new procedures but more so in that they positive effects of them are likely to wear off over the medium to long term. You never know. The data isn't there yet.

glineli

Latest update. No more pain in the eye. There is an improvement in vision for sure. Looking forward to wednesday to hopefully confirm that. Still have the temp contact in and still on antibiotics.

glineli

Was back up again today, everything went well. My vision in my left eye has shown big improvements. Next step is the 30 day visit where hopefully the shape will have stayed the same as today. Claire and Dr Cummings were delighted but cautiously optimistic.

Shane732

glineli wrote: »

Was back up again today, everything went well. My vision in my left eye has shown big improvements. Next step is the 30 day visit where hopefully the shape will have stayed the same as today. Claire and Dr Cummings were delighted but cautiously optimistic.

Did you have Keraflex?

glineli

Shane732 wrote: »

Did you have Keraflex?

I had ck on thursday and then cxl on friday.

glineli

Just an update almost 3 weeks on. Vision has stayed as good as it was after day 5. I do get some pain in the eye every now and again, maybe after watching tv but its nothing too bad. Overall i am delighted with how things are going. Back up in 2 weeks for my monthly checkup.

glineli

Back up tomorrow for monthly check up. The vision has stayed as good as it was after day 5, thankfully. No more pain in it. I only need to put the odd eye drop in it. Really happy about it. Hopefully get the right eye booked in tomorrow aswell for sometime in February. Hopefully the new shape has stayed, will know tomorrow.

glineli

glineli wrote: »

Back up tomorrow for monthly check up. The vision has stayed as good as it was after day 5, thankfully. No more pain in it. I only need to put the odd eye drop in it. Really happy about it. Hopefully get the right eye booked in tomorrow aswell for sometime in February. Hopefully the new shape has stayed, will know tomorrow.

i was back up on wednesday. Thankfully all looks great. The shape has changed a little but my sight is better. Its back up again for 3 month check up. So far the difference is brilliant and i cant speak highly enough of the staff at the Wellington, they are excellent.

tashiusclay

Just a short update on my proceedings, as I already mentioned in my right eye along with Cxl I'm also a suitable candidate for the SimLc procedure on that eye,
I've asked Dr Cummings is it possible to get the SimLc done at a later date if
I so wished, he said thats fine, once the shape is locked in with the Cxl it can be
done sometime in the future if I wanted.
So for now I'm just going with the Cxl, I'd much prefer to see how these
new procedures stand the test of time before deciding to try one of them.

I have to say I was impressed and reassured with Dr Cummings attitude,
nothing was pushed onto me, if I didn't want to go down a certain route for
whatever reason, my opinion and concerns were always the main priority.

I'm booked in for Cxl next Friday the 11th, I'll report how the lens fittings and options etc go after that.

glineli

Best of luck with the CXL. i am 7 weeks post op and things are great. The procedure isnt too bad. You will have a little discomfort after it but after 24 hours things should be a lot better. I was getting a lift back to Clare that evening and that was probably the worst of it. Once i got home and into a dark room, a good nights sleep and i was a lot better.
I am back on Feb 18th for 3 month check up and hopefully get a date for the right eye then.

tashiusclay

Cheers, Yes I'm not too worried about the Cxl, it seems a pretty straightforward procedure at this stage. The journey back to Mayo afterwards might be the harder part much like yours back to Clare lol. I have to rely on my bad left eye until the
following Wednesday when the bandage comes off the good Cxl'd eye, and the sight is close to useless in that left eye, so I've a quiet weekend ahead of me moping around the house! Did you have any haziness or fogging etc in your eye after the Cxl?

glineli

I only had the temporary eye patch on for a day and took it off on Saturday. The only things i had was dryness which the drops solved. The other thing was for 2 or 3 days i just found i couldnt keep the eye open, the eye lid just became very heavy. Otherwise it was grand. No real issues.

The staff there are brilliant. They are talking to you all the way through the procedure and you get to recover in a nice private room with 2couches. I went for a bit of a sleep while i was waiting!!!

Best of luck tomorrow and keep us updated!!

bootybouncer

bumping this lad..........my right eye is fecked with KC so Im going to bite the bullet and finally see to it, could not get used to the rgp lense and am getting no where with constantly updating my glasses..............might go with the free consultation with optilase ????

tashiusclay

I had forgotten to reply again on here post Cxl until the thread was bumped.
No issues with my Cxl, all went as I expected, I was out of action as regards driving, computer work etc for a couple of weeks after as I had to rely on my bad left eye until reasonably clear sight returned in my better right eye.
One bit of advice though, when you leave the clinic after the Cxl you're given a bag full of various drops and painkillers, make sure you keep the anesthetic eye drops to hand for the journey home, don't be like me waking up in the back seat of the car from a painkiller and Valium induced coma with intense eye pain, and then having to spend 5 minutes blindly fumbling around the back of the car looking for the aforementioned drops!

Back up on the 13th March to get measured for 14mm rgp's, I'm both looking forward and anxious to trying these for the first time, as I'm hoping I'll tolerate them ok, getting desperate to get back to work at this stage and I dread the thought of more delays while trying to get used to these rgp's. Anyone on here with KC using these bigger rgp's?

tashiusclay

bootybouncer wrote: »

bumping this lad..........my right eye is fecked with KC so Im going to bite the bullet and finally see to it, could not get used to the rgp lense and am getting no where with constantly updating my glasses..............might go with the free consultation with optilase ????

I don't think optilase is what you want, standard laser isn't suitable for KC?
How far progressed is your KC? What size rgp are you wearing?

bootybouncer

Im not wearing any rgp...........................i cannot get used to them..........................and thoughts of getting cross linking and then to have to wear rgps is terrible.............................what about those intacs or I hear of some great things coming from the states about inserting lenses into the eyes or something..............................eitherways ive seriously neglected my eyes and I am suffering now .................optilase do the cross linking

tashiusclay

bootybouncer wrote: »

optilase do the cross linking

Ah ok. Apparently comfort and tolerance of rgp's rests a lot on the skill of the
optometrist in designing a lens to perfectly fit your eye. If they fit well, they're supposed to be reasonably comfortable.
Also, what size was the rgp you gave up wearing, 9mm? They're supposed to be notoriously difficult for some people to get used to.
I'm awating getting measured for a bigger 14mm rgp, which is supposed to be
more comfortable than the smaller ones.

bootybouncer

tashiusclay wrote: »

Ah ok. Apparently comfort and tolerance of rgp's rests a lot on the skill of the
optometrist in designing a lens to perfectly fit your eye. If they fit well, they're supposed to be reasonably comfortable.
Also, what size was the rgp you gave up wearing, 9mm? They're supposed to be notoriously difficult for some people to get used to.
I'm awating getting measured for a bigger 14mm rgp, which is supposed to be
more comfortable than the smaller ones.

who do attend champ if you dont mind me asking, have you had the cross linking done already? ............................ my right eye is horrendous

tashiusclay

The wellington clinic http://www.wellingtoneyeclinic.com/

I got cross linking done on my right eye a month ago. The sight in my right
eye is pretty poor, but luckily it was still thick enough(450 microns) for cross linking. The left eye way too far gone for cross linking, I'm hoping that it stabilizes enough that I can keep an rgp on it and avoid a corneal transplant, time will tell though.

Hows your left eye?

bootybouncer

left eye is ok aided by glasses......................not great though, my right aided with glasses is bad, and thats with a new prescription, ive been referred to the eye and ear, but not going to wait, with help from the folks Im gonna hit the wellington soon ....................................... oh I hope they find a cure for it soon....................im 36 now, id be tempted to hold out for a cple more years to see if the science advances a bit..........its the night driving that really gets me

tashiusclay

I think things will get better for Kc in a few years, things are already much better than they have been say 10 years ago. I've been reading a little bit about treatment of Kc with stem cells, sounds very promising.

In the meantime defo get the damage minimized with Cross linking, and then see what the future holds. You don't sound too badly hit by it, vision-wise, believe it or not. Do you get dry eyes from it?

Yes the night driving is a bitch, I can't really drive at night at this stage, especially on a longer journey, the halo's are too much.

bootybouncer

No dry eyes at all, Ive been told that its very bad in the right, Im kinda glad i stuck to my guns and didnt wear the rgp lens, I actually dont think all the fiddling at the eyes with them is good in the long term ............................ Its scary to think that even with cross linking u still find night driving terrible ??????? thats crazy, even with glasses ????..............in fairness I only drive routes at night that I know

tashiusclay

Cross linking doesn't improve your vision in most cases, it just stops further damage from the Kc. And glasses don't do an awful lot for Kc either, they work best when its still in its early stages, in later stages their help in getting clear
vision is so-so. When did you first get diagnosed with Kc?

glineli

tashiusclay wrote: »

Back up on the 13th March to get measured for 14mm rgp's, I'm both looking forward and anxious to trying these for the first time, as I'm hoping I'll tolerate them ok, getting desperate to get back to work at this stage and I dread the thought of more delays while trying to get used to these rgp's. Anyone on here with KC using these bigger rgp's?

Is Claire doing the fitting? She showed me the larger ones but so far i havent had to wear them.

I am hoping to get CK and CXL done on the right eye late March early April time. I had the 3 month check up on Monday and they are very happy with the left one so far