Keratoconus

Shane732

Dero wrote: »

Possibly. I don't go to Dr. Cummings so I have never met him, but my own surgeon did mention that they occasionally use the laser post-graft, but he's primarily focused on getting a lens on there. I'm fairly lucky though in that I've never had any issue with RGPs (and I've had them quite a while...)

I'm due to see him again in August so maybe I'll broach it and see what he thinks.

I assume the hope is that you'll get into soft lens post graft at some point?

I wouldn't be overly keen to go and get laser done on a eye after a transplant.

Dero

Shane732 wrote: »

I assume the hope is that you'll get into soft lens post graft at some point?

I wouldn't be overly keen to go and get laser done on a eye after a transplant.

I think if I can get good vision from an RGP then I'd be happy to stay with that. I'm one of the lucky ones that has good tolerance for rigid lenses and while I dream of a silver bullet that would give me 20/20 without correction, I know full well that with Keratoconus, laser surgery is not it. :-/

super106

HI

miracle lenses for us all have arrived, Kerasoft IC, going for a fitting soon, check out there videos on youtube ,


great to see all the stories from other alike sufferers, ive have x linking and wear rgb day and soft at night no real probs.

glineli

super106 wrote: »

HI

miracle lenses for us all have arrived, Kerasoft IC, going for a fitting soon, check out there videos on youtube ,


great to see all the stories from other alike sufferers, ive have x linking and wear rgb day and soft at night no real probs.

Hi

When you going for the fitting? i have serious trouble with the rgps so would these be easier to wear?

super106

yes they are soft lenses

glineli

super106 wrote: »

yes they are soft lenses

Thanks i just got approved for CXL with aviva so hopefully between that and these new soft contacts life will be a lot easier

Shane732

super106 wrote: »

HI

miracle lenses for us all have arrived, Kerasoft IC, going for a fitting soon, check out there videos on youtube ,


great to see all the stories from other alike sufferers, ive have x linking and wear rgb day and soft at night no real probs.

I'd imagine you're not a serve case if you are wearing soft lens at night.

MarcusFenix

Hey guys, after my cxl in the ear and eye back in jan I decided to go see dr corkin in the Wellington. I must say for 200 euro I would have liked to have got more FaceTime instead of 5 min chat ending with "go see Clare ....for lens fitting"!

Anyway...I'd like to see who is the BEST person for lenses in Dublin area, I've seen a guy in waterford mentioned here before but I want someone close.

I'm hoping to move away from glasses completely as my job makes wearing them a hassle so I want the very best treatment I can get. After all how much is sight worth?

Thanks in advance for the recommendations!

M

super106

Shane732 wrote: »

I'd imagine you're not a serve case if you are wearing soft lens at night.

dunno but they work about 50% of the vision from rgp's

also just got Kerasoft 3 lenses which are same vision as rgp's and are soft !

super106

MarcusFenix wrote: »

Hey guys, after my cxl in the ear and eye back in jan I decided to go see dr corkin in the Wellington. I must say for 200 euro I would have liked to have got more FaceTime instead of 5 min chat ending with "go see Clare ....for lens fitting"!

Anyway...I'd like to see who is the BEST person for lenses in Dublin area, I've seen a guy in waterford mentioned here before but I want someone close.

I'm hoping to move away from glasses completely as my job makes wearing them a hassle so I want the very best treatment I can get. After all how much is sight worth?

Thanks in advance for the recommendations!

M

Donal omalley - dixon hempenstall suffolk st dublin only man for keratoconos, hes away until nov 12th though....

shelleymc

hi, I was wondering if anyone knows of a good opthamologist in the midlands? I was with Donal OMalley for years and found him excellent but I have now moved to Mullingar and need to find someone close by. any recommendations please?

Corvo

I'm booked in to the Wellington Eye Clinic for the 9th of October for corneal cross linking. My keratoconus has progressed quite far and it is no guarantee that it will actually strengthen my eye, which is quite worrying due to the fact I don't have €1,500 sitting around all the time.

€280 then for a contact lens fitting after this procedure.

Fingers crossed because I just can't take my eyesight being this bad. I can't even get a lens onto my eye at this moment in time.

S.M.B.

If your KC is that advanced I would have thought CXL is no longer an option. I've gone beyond the stage where CXL is a possibility but have been happily wearing a (scleral) lens for the past 5 years.

Just reminded me that I am waiting for an appointment for a fitting of a new bespoke scleral lens for my right eye. I may follow that up.

This will definitely be the last lens for me.

Corvo

S.M.B. wrote: »

If your KC is that advanced I would have thought CXL is no longer an option. I've gone beyond the stage where CXL is a possibility but have been happily wearing a (scleral) lens for the past 5 years.

Just reminded me that I am waiting for an appointment for a fitting of a new bespoke scleral lens for my right eye. I may follow that up.

This will definitely be the last lens for me.

What are they like?

glineli

Griffin1988 wrote: »

I'm booked in to the Wellington Eye Clinic for the 9th of October for corneal cross linking. My keratoconus has progressed quite far and it is no guarantee that it will actually strengthen my eye, which is quite worrying due to the fact I don't have €1,500 sitting around all the time.

€280 then for a contact lens fitting after this procedure.

Fingers crossed because I just can't take my eyesight being this bad. I can't even get a lens onto my eye at this moment in time.

Hope the op went well. I might be getting this done next month as Dr Cummings has recommended it and well thankfully Aviva cover it.

When you are up and about let us know how it went

Corvo

glineli wrote: »

Griffin1988 wrote: »

I'm booked in to the Wellington Eye Clinic for the 9th of October for corneal cross linking. My keratoconus has progressed quite far and it is no guarantee that it will actually strengthen my eye, which is quite worrying due to the fact I don't have €1,500 sitting around all the time.

€280 then for a contact lens fitting after this procedure.

Fingers crossed because I just can't take my eyesight being this bad. I can't even get a lens onto my eye at this moment in time.

Hope the op went well. I might be getting this done next month as Dr Cummings has recommended it and well thankfully Aviva cover it.

When you are up and about let us know how it went

Hi. Just woke up now.

So where do I begin. First I was talked through the medication I would have to take afterwards (anti biotics, drops, painkillers, sleeping pills, a pirate like eye patch and I would also be given a small amount of the anaesthetic to bring home) They described how the eye would react that night also.

I was also offered Valium which I declined (regretfully!)

I was then brought in and made lie down. Anaesthetic was applied and a instrument was used to hold my eyeball in place. It was like a cooking thongs. (ie couldn't blink) While I couldn't exactly tell, the girlfriend was present and she told me it looked was slightly removed! Eeek!

Now, the weird part. He then uses something like a scraping device or scalpel and takes away a layer from the front of your eye. You can see your eyeball being scraped and the layer being removed! All very weird at this stage I must say. After this they keep applying a Riboflavin liquid to the eyeball for up to 25mins.

The cornea is then measured and viewed again.

You are then put back on the bed and the laser treatment begins (staring at a range of LED's).This lasts for about 10mins. He also places a contact lens in at time which I will have removed on Monday.

And that's it. You get 20mins to recover and off you go.

Funniest thing is, none of the above hurt or caused discomfort except for later on in the LED treatment and this was very slight. The whole staff were excellent and will chat to you throughout the procedure and even blare music in the room! I also received a text later on to check up on me and wish me luck.

He did advise that there would be pain that evening and truth be told it was extremely sore both and the way home and that night. Just bring an ice pack (which will stop your tear ducts streaming) and apply the anaesthetic and take both the painkillers and sleeping pills. Get a good nights rest and stay in a dark room.

Now this morning the pain has most definitely dropped by 80% and I just have a gritty feeling but I will continue to use drops to lubricate it. I'm hoping by tomorrow to operate somewhere close to normal.


Will keep ye updated on how it goes. Many thanks for your questions. I was very nervous (take the bloody Valium) but they made it a very easy procedure. I just hope that it will work for me as the odds of success have dropped due to the far along stage I am at.

glineli

Thanks for the update, its great to hear how someone else got on and also what to expect.

Corvo

glineli wrote: »

Thanks for the update, its great to hear how someone else got on and also what to expect.

No problem. I know it sounds a bit sick at times but the whole thing is really easy.

Plus, the nurses are gorgeous!

S.M.B.

Griffin1988 wrote: »

What are they like?

Big!

They do take quite a bit of getting used to and they may not be able to reproduce the same level of vision that you'd get from RGPs as there is no direct contact between the lens and the cornea.

The plus sides:

They've kept me away from the operating table for the past 6/7 years.
I could wear the lens for a full 24 hours and have no adverse reaction unlike previous lens I've had.
There is zero chance of the lens flying out of my eye/slipping around my eye/getting stuff caught underneath it.

I'd find it really hard to go back to corneal lens ever again.

Good to hear that the Op went well. I hope it has the desired positive effect.

I don't fully understand CXL. I'm going to a presentation about Advanced Surgical Procedures for handling KC in London on Saturday so I hope to be a lot more informed then.

I still think that I'm beyond the point where any of these procedures are viable options though.

S.M.B.

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

Scleral lenses benefit patients with corneal irregularities

Corvo

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.

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

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

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

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

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

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

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

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

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.