Keratoconus

Corvo · 10-10-2012 2:43pm

S.M.B. wrote: »

Coincidently, this article was published in the Eye & Contact Lens journal today.

Scleral lenses benefit patients with corneal irregularities

Thanks for that. Interestingly, it mentions corneal scars which I do have, just below the pupil. Doctor Cummings did mention using these corneal rings, which once inserted into the eye, will expand and flatten the curve, in turn improving the vision and strengthening the surface.

Either option sounds good but your lens do sound line a dream solution. Are they ever uncomfortable?

S.M.B. · 10-10-2012 11:36pm

Griffin1988 wrote: »

Thanks for that. Interestingly, it mentions corneal scars which I do have, just below the pupil. Doctor Cummings did mention using these corneal rings, which once inserted into the eye, will expand and flatten the curve, in turn improving the vision and strengthening the surface.

Either option sounds good but your lens do sound line a dream solution. Are they ever uncomfortable?

INTACS? That procedure should be covered in the presentation at the weekend too. Again, I don't know a whole lot about it yet.

After the initial phase of getting used to the size of the lens (which I would have had with corneal lens too) there's little discomfort imo. Unless your KC advances to a stage where it starts to make contact with the lens. Then it's a matter of trying a steeper curved lens that further clears the cornea.

I thought I read that using sclerals to treat KC had become more acceptable in Ireland but I can't remember where. It's frowned upon at times because you're using an old out dated form of contact lens to treat a modern problem. I am getting a perspex one made up soon enough as opposed to being gas permeable which is the equivalent of a contact lens from the early 1900's.

Anything to keep me away from a graft is worth a try in my book.

zyanya · 11-10-2012 10:40pm

Cannot believe I'd find so many people with the same problem as I have, in an unrelated forum! Here where I live, this is a rare condition. I have only met three other people with keratoconus in my life, one is related to me, and the other two are foreigner. I'll read a bit on this thread to catch up. I have been diagnosed for over ten years, wear RGP contacts, or sometimes, bi-concave glasses (super thick and heavy), and underwent cross-linking surgery a couple years ago. My experience was pretty much as described above, although recovery was worse because my problem is qute advanced.

It's been great to find this thread!

glineli · 24-10-2012 12:49pm

Griffin1988 wrote: »

Thanks for that. Interestingly, it mentions corneal scars which I do have, just below the pupil. Doctor Cummings did mention using these corneal rings, which once inserted into the eye, will expand and flatten the curve, in turn improving the vision and strengthening the surface.

Either option sounds good but your lens do sound line a dream solution. Are they ever uncomfortable?

Hows the eyes now?

I am booked into the wellington nov 15th for CK and the 16th for CXL. This is a trial where they do both in 24hours. I am just arguing over the price for a trial at the moment, but looking forward to getting it done

Corvo · 24-10-2012 12:55pm

glineli wrote: »

Hows the eyes now?

I am booked into the wellington nov 15th for CK and the 16th for CXL. This is a trial where they do both in 24hours. I am just arguing over the price for a trial at the moment, but looking forward to getting it done

They are good now, but saying that I'm not wearing a lens in that eye.

There was guy up there getting both the CK and CXL and I think he found it as a lot less painfull than I did as they then didn't have to remove layers from the eye.

I think if you are ok for CK the op should go even smoother for you

Best of luck

tashiusclay · 28-10-2012 3:20pm

Hi folks, I recently suspected I had Kc, following a visit to Specsavers for my first pair of glasses back in early August, which I had been meaning to go in for a long time, they said I had a severe astigmatism in my left eye, and my right eye was better but not by a whole lot, they gave me a letter to give to my gp, who referred me to the Eye and Ear hospital.

Bits of research on the net about my own symptoms led me to provisionally confirm that I had Kc. Almost two months passed since my gp visit and still no word from the Eye and Eye, I can't afford to risk my remaining eyesight any longer, so I've decided to go private via the Wellington clinic, my initial aim is to save whats left of my good eye with crosslinking, and work onwards from there to try and improve the sight in both eyes with rgp's or whatever is the most suitable lens available to me.

I was up yesterday for a consultation, my left eye is a stage 4, which is what I expected, my right eye is late stage 3, which is worse than what I expected, but the actual health and thickness of that eye is still quite good surprisingly, thickness is 470 microns, and it still corrects a reasonable amount with just glasses. I think the reason for this health and thickness level is maybe because I never seemed to get dry eyes, and I suspect the reason for this is because I always used to drink a lot of fluids day to day and this was probably hydrating my eyes a certain amount.
Dr. Cummings said due to the the thickness of my good eye that along with the Cxl, its also suitable for the SimLC procedure, he said this would produce a better overall shape of the eye which would hopefully subsequently allow a soft lens to be used on the eye, instead of an rgp.

From what I've read about the SimLC procedure, the results seem to be good so far, but unfortunately, I've read very little about it so far as its quite a new procedure. Ideally I'd like if it was possible to save the remaining strength of the eye using Cxl, and then at a later date decide on the SimLc, after first seeing can I manage reasonably ok with rgp's, and also letting some more time pass
to see has the SimLC stood the test of time, unlike for example what I've been reading here with Shane732's experience with Keraflex.

Claire the optometrist managed to get good quality of vision out of my bad left eye using the electronic machine thingy, which was a nice surprise, I thought that I was long redundant as regards recovering any standard of sight from it using corrective procedures, she said that she has access to a newer type of soft rgp which are more comfortable, along with ringing Dr. Cummings back on Tues to enquire if the SimLC can be done at a later date following the Cxl, I also want to ask Claire what is the name of these soft rgp's she mentioned, so I can do my own bit of research on them to see if they might be a viable alternative to any laser work for now.

From what I've read about the Cxl it seems to be worth doing, but I just don't want to go diving headfirst into any surgery that might prove unnecessary at this point in time for me.
I'll keep my contact with Wellington and any updates etc up here on this thread for reference for others, and if anyone apart from eddiem74 had the SimLC done I'd love to hear how it went.

Shane

glineli · 12-11-2012 11:50am

Going for CK on thursday and CXL on Friday. Looking forward to getting it done actually and hopefully it means i can get a soft rgp at the end of this process.

glineli · 16-11-2012 2:13pm

glineli wrote: »

Going for CK on thursday and CXL on Friday. Looking forward to getting it done actually and hopefully it means i can get a soft rgp at the end of this process.

i had ck yesterday. Relatively painless. Now queuing for cxl. Ck went well and they were very happy with the new shape. Hopefully cxl will lock that down now

glineli · 16-11-2012 11:14pm

glineli wrote: »

i had ck yesterday. Relatively painless. Now queuing for cxl. Ck went well and they were very happy with the new shape. Hopefully cxl will lock that down now

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.

Shane732 · 17-11-2012 12:06am

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.

Corvo · 17-11-2012 12:22pm

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 · 17-11-2012 7:01pm

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. · 18-11-2012 10:53am

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 · 18-11-2012 8:30pm

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 · 18-11-2012 8:36pm

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 · 18-11-2012 10:01pm

how can you comment here without unwittingly giving advice?

S.M.B. · 19-11-2012 7:25pm

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 · 19-11-2012 11:06pm

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 · 21-11-2012 8:01pm

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 · 21-11-2012 11:11pm

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 · 22-11-2012 10:20am

Shane732 wrote: »

Did you have Keraflex?

I had ck on thursday and then cxl on friday.

glineli · 05-12-2012 2:25pm

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 · 18-12-2012 4:22pm

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 · 21-12-2012 5:02pm

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 · 04-01-2013 7:00pm

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 · 07-01-2013 11:14am

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 · 09-01-2013 11:51pm

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 · 10-01-2013 11:56am

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 · 19-02-2013 9:17pm

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 · 19-02-2013 10:44pm

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 · 19-02-2013 10:45pm

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 · 19-02-2013 11:28pm

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 · 19-02-2013 11:35pm

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 · 19-02-2013 11:41pm

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 · 19-02-2013 11:51pm

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 · 19-02-2013 11:56pm

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 · 20-02-2013 12:06am

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 · 20-02-2013 12:12am

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 · 20-02-2013 12:23am

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 · 21-02-2013 5:24pm

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

bootybouncer · 22-02-2013 7:37pm

tashiusclay wrote: »

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?

Diagnosed about 8 years ago champ....................I know I know Ive really neglected me oul eyes

bootybouncer · 28-02-2013 8:09pm

Anyone get the intacs procedure done ?????

tashiusclay · 05-03-2013 9:37am

glineli wrote: »

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

Yes its Claire thats fitting, up on 13th March to get measured up. Very anxious to see how I can adapt to these lenses, but I'm sure I'll manage to tolerate them.

Nice news on the left eye, glad the treatments are going well for you. Keep us informed throughout.

bootybouncer · 10-03-2013 10:00pm

Bump........Anyone get intacs done???

okoboyle · 11-03-2013 6:15pm

not sure if people on here know of a closed private chat group on fb called keratoconus ireland support, for all irish kc patients

glineli · 12-03-2013 10:04am

Going to get right eye treatment in April. CK on the 15th and CXL on the 16th. Looking forward to it.

bootybouncer · 14-03-2013 11:37am

Sim lc on the right eye in april ......................contact lenses fitting in the left eye in the meantime................................ at last Im doing something about it

tashiusclay · 15-03-2013 1:51pm

Well folks, I was up in the Wellington on Wednesday for fitment of the 14mm rgp's, the type being used for me are SoClear.
Not much to report this time, just fitting up and testing and ordering the lenses. Having the lenses in felt strange, as to be expected, but they were not as uncomfortable as I expected. Claire got 20/20 in my bad left eye with them, in which, uncorrected, or even very slightly corrected with glasses, I cannot even see any of the chart-the eye is usually pretty much useless as is, so that was quite nice.
The colours and line definitions were amazing, everything looked so vivid when I first put the lenses in!

Back up again on the 10th April when the lenses will be ready for me. I'll report more after that.

tashiusclay · 15-03-2013 1:52pm

bootybouncer wrote: »

Sim lc on the right eye in april ......................contact lenses fitting in the left eye in the meantime................................ at last Im doing something about it

Good luck with it, looking forward to seeing how the SimLc goes for you. Any idea what type lenses you will be offered?

MarcusFenix · 15-03-2013 2:31pm

tashiusclay wrote: »

Well folks, I was up in the Wellington on Wednesday for fitment of the 14mm rgp's, the type being used for me are SoClear.
Not much to report this time, just fitting up and testing and ordering the lenses. Having the lenses in felt strange, as to be expected, but they were not as uncomfortable as I expected. Clare got 20/20 in my bad left eye with them, in which, uncorrected, or even very slightly corrected with glasses, I cannot even see any of the chart-the is usually pretty much useless, so that was quite nice.
The colours and line definitions were amazing, everything looked to vivid when I first put the lenses in!

Back up again on the 10th April when the lenses will be ready for me. I'll report more after that.

Hi Lads,

Just add my bit to this as I've had some work done since my CXL in the royal Vic around this time last year.

I've been in to see Clare and I'm on my 2nd set of lenses, the first ones I had were too tight, and even though I found them comfortable initially they did start to get very uncomfortable by the time my new larger ones arrived.

Same story as tashiusclay regarding the vision. 20/20 in an eye that I wouldn't have read a word with in 4-5 years in!!!:eek:

So even though the new lenses are a tad more irritating with the added movement the increase in vision quality more than makes up for it!

Was in with Clare yesterday to see how the new lenses fit and she was over the moon at the fitment, so now my next visit will be the 6 month check up jobbie.

Overall I found the whole experience to be excellent (not plugging, just was very disillusioned with a few years of Specsavers & HSE treatment before this) and am getting used to no glasses anymore. Cannot recommend Clare highly enough in terms of treating the patient as no.1 and getting a result I couldn't have hoped for!

Regarding the lenses themselves....couldn't tell ya what they are other than largish gas permeable jobbies.

Thumbs up from me

Keratoconus

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