Scleral

You may not have heard of Scleral lenses, but in fact they were the first ever lens invented, back in 1888. They were also the only lens available up until the 1950s. They were fitted to cover the entire eye and rest upon the sclera, creating a dome over the eye and the corne that is filled with saline solution.

In the old days, they used to take an impression of the eye in order to fit the lens. Nowadays, thankfully, this is not the case. They are very big, scarily big some may say, reaching a diameter of 25mm in some cases. But this initial impression should be overcome as they are an extremely effective and useful lens for Keratoconus sufferers. They do not fall out, you cannot get bits of grit or dirt behind them, and they are surprisingly comfortable. Also, the problems with oxygen reaching the cornea have been overcome with the use of gas permeable materials.

The capacity to correct vision is also high and they can be worn for all stages of Keratoconus, from slight cases to the very advanced. They are also useful for Hydrops patients, as the cornea remains untouched while the lens is in. On the downside, learning to put them in is extremely difficult (but possible) and you do spend a large amount of money on saline solution!

The trouble is keeping the saline in the lens as you insert the lens in the eye. Failure to do so means bubbles of air get in and these float in front of your vision. The lens itself is also expensive to fit and make, meaning some practitioners are put off offering the service. However, its benefits mean that you should push for this type of lens as it really is an ideal option for Keratoconus.

MY VIEW

Scleral lenses have transformed my life. They are comfortable, I get great vision from them and they are so much easier to wear and control than other lenses. They do look intimidating and the size can be troublesome for some, but you really should persevere. It took me around 2 months to get used to putting them in without getting bubbles in the saline solution – so that gives you some diea of the commitment you need. The pay off is great vision and great comfort.

The saline lens kit, for me, looks like this:

Cleaner, storage box and saline solution

You store the lenses dry. So each morning, you take them out of the container, clean them with the peroxide cleaner between your fingers, rinse with the saline solution, then comes the tricky bit. You hold the lens between your thumb and first two fingers, fill the lens with saline solution, bow your head down to the lens, and insert into the eye. To get the lens out, you flip it using the top lid. It takes a lot of getting used to. Below are a couple of videos to help you get a better idea of getting the lens in and out.


The storage box has to be cleaned every two weeks using the cleaner and saline then wiped dry with tissue. Two weeks is a minimum. The lenses also have to be cleaned using a protein remover tablet every couple of weeks. My choice of protein remover is Amiclair. You stick the lens and a tablet in saline in a container over night and then clean as usual in the morning. This prevents the build up of gunk that can cloud vision when it floats around in the saline, and cause conjunctivitis. I also changed bedding and towels every 7 days for the same reason.

When the lens is in the eye it looks like this from the side:

Left Eye With Scleral Lens In

Left Eye With Scleral Lens In

Right Eye With Scleral Lens In

Right Eye With Scleral Lens In

209 thoughts on “Scleral

  1. kimberly says:

    Just yesterday the specialist did a fitting for the screral lens. I have no insurance and the product and fittings are expensive. My collective family will attempt to cover the cost if I chose to do so. I suffer from keratoconus. I have been a trooper for 28 years. NOW these lenses intimidate me due to size. Also I did not see myself in them. Do they have the special effects look when used under normal circumstances? Will I now have to overcome that social circumstance? I look forward to reading about your experienced and reflect on how they mirror mine. Thank you so much for being here. I appreciate your humor and you have extended a hand to a fallen comrade. smile Your making an impact in the world! Thank you so very much for being here.

  2. keratoconusinfo says:

    Hi Kimberly, the size freaked me out a bit too, but you get used to them after a while, and you shouldn’t worry about people noticing, all the comments i get are positive in the sense they wonder how my eyes look so big! I tend to not tell them I am helped out by the lenses :) They don’t have the special effects look, and they are really comfortable to wear. The docs say you should only have them in for 8 hours but i regularly do 16-hour days without any trouble. It’s such a shame that the US health system does not cover you for the lenses as they really make a massive difference. The NHS isn’t perfect, but when I hear from the US i realise how lucky I am to have my lenses for free. I hope the expense isn’t too bad, perhaps contact a forces charity or an eye charity? They might be able to help!

    I wish you all the luck!

  3. karen says:

    Hi thank you for the information.
    Do these lenses help with the glare and halos that are associated w/ KC.
    I have been using synergy lenses for 2 yrs. They do help to some degree, but nothing has helped w/ the horrible shadowing, halo and glare – day and night.
    Maybe these scleral lenses do?? Hope so.
    How would I find a specialist in fitting these type of lenses?
    THANK YOU

  4. keratoconusinfo says:

    Hi Karen,

    As I’m not a doctor I don;t know all the ins and outs of the reasons for glare and shadowing, what I can say is that for me Sclerals have indeed solved these proiblems. The trouble with Scleral lenses is that little is known about them for KC purposes, even amongst doctors. So you have to find someone with some experience. It would be worth getting your optician to look into it for you, where are you based?

  5. Bec says:

    Hi Karen, I have just found this great site and read your posts. I have had K since I was 20 and only 6 months ago was fitted with a schleral lens in my left eye. I am doing my best to persevere with it because it IS difficult to put in but I am finding with practise it is becoming easier! I also noticed your question about glare..I have had awful “Light and Glare” issues with my eyes. I basically live in my big sunglasses – even when I wake up in the morning! I find that the schleral lens still lets a small amount of glare in BUT not as bad as my rigid lens I previously had. I am still in the “fitting process” though at the moment so still testing a few. Where abouts are you situated because I can recommend a great lens fitter in Australia! Good Luck!

  6. keratoconusinfo says:

    I live in my sunglasses too. Got scleral in my left eye but right eye has a hydrops so nothing in there at the mo! Worse still, it is hayfever season which is pretty much hell on earth! Glad you like the site!

  7. Silviu says:

    Hi there…
    Can u tell me around how much a sclerall lens cost? With fitting and everythig? in Uk i mean…

  8. Vision 4 All says:

    Just wanted to add that higher order aberrations are the cause of glare and haloes. In the early stages of keratoconus,
    Intacs can be very helpful.
    http://www.keratoconushelp.com/inta_how.htm
    Patients appreciate the crisper vision.

  9. Bruce says:

    I have had keratoconus for about 14 years now. I have been lucky in that it has been pretty stable over the period and only in one eye (although I don’t have any central vision in the other eye).

    My biggest problem is the sensitivity of my eye – I spend far too much time with eye streaming tears when foreign bodies get under my gas permeable lenses.

    I was first introduced to scleral lenses last year and they have been a revelation. I only wear them occasionally and I am not sure that the prescription is right yet. However, they enable me to do things (like work in dirty conditions e.g gardening; cycle etc) much more comfortably than I would otherwise be able to do. They also enable me to rest my cornea (I have been wearing contact lenses for 29 years now).

    I am off to Moorfields again tomorrow morning to have my eyes (and the sclerals) checked – but I am really glad to have them as an option and once you have ceased to be intimidated by their size, putting them in and taking them out is quite manageable.

  10. Barrott says:

    Hey Guys.

    I’m 22 y/o post music grad and known i’ve had keratoconus for bout 5 years, and only today decided to read up about it.
    Reading these posts i’m surprised the scleral lens aren’t used in most cases.
    Believe me i remember seeing the sky dish size contact lens for the first time and looking at my parents in fear (when i could make out where they were sitting) ha.
    Despite this i didn’t have a choice. It was either sclerel lens’ or the cornea transplant.
    I wear these lens’ in both eyes and it really does make a huge difference. Yeah it takes a while to master the art of getting no air bubbles but it really is worth it and comfortable.
    Only downside i’ve found is that they have caused conjunctivitus everytime i’ve fallen asleep with them in but thats my fault.

    Hope it’s of any help

  11. keratoconusinfo says:

    Haha I haven’t fallen asleep in them yet, but echo everything else you’re saying. It was sclerals or transplant for me too and I can’t speak highly enough of them. It’s kind of good freaking people out with the size of them as well :)

  12. barrott says:

    especially if you saty at someones house and use the plunger to get them out. ha. Good party trick

  13. carlos says:

    I live in the Caribbean. Can someone tell me where I can get a good clinic for these lenses (scleral) (Florida Atlanta) Thanks in advance

  14. Matt says:

    I am sitting here wearing my new scleral lens (day 2). I am so far, so impressed with the experience that I decided to spend a few minutes doing some reading about them.

    I have been suffering from KC for 25+ years and have done it all. GP lenses for many years, Cornea Transplant in one eye, piggy backs, synergeyes, and now Sclerals (in non transplant eye).

    For the past 6 months I have been trying to address lens intolerance in my remaining kc eye. Piggy backs had been working for a while, but that was no longer the case. We tried synergeyes with no luck, and yesterday I got my scleral. I was more than skeptical, I really thought I would never be able to wear them comfortably (if a small gp lens hurts like hell, how can a big one possibly be comfortable) Granted i am only about 10 hours wear time in so far, I’m amazed at how comfortable they are. For the first time, in a long time, I feel like I may have a lens I can wear.

    It hasn’t come cheap, with all the various fittings etc… my out of pocket is going to come to over 500, insurance will pick up the remainder (I think).

    Now I just hope this will last a while, I am trying to postpone surgery in this eye as long as possible.

  15. abhi says:

    hi…i had been diagnosed with kc 2 yrs back…goy collagen cross linking done in both eyes…stabilized my condition..but was not happy with rgps..wearing rose k since 1 yr…but haloing present at night..tried piggybacking..but not useful…tried scleral lenses last week..have ordered them..early to say but i think many of my problems seem to have been solved…these lenses need to be given a try..fingers crossed!!

  16. arsh says:

    Hi All!

    I’ve keratoconus in my right eye. I was diagnosed in January, 2010. I see 10-12 images of a single point of light :(. I tried RGPs for 2-3 months but they didn’t work. I went for C3R about 2 weeks ago.
    My question is, after how much time from getting C3R done , will my vision come to earlier levels? I feel my vision has deteriorated after C3R, and I’m not talking about the usual haze that we encounter after a procedure, its the umber of images that has increased.
    Also, can anyone tell what is the cost of Scleral Lenses and what is their operating cost (saline solution, new pair etc)?

    It would be of great help!!

    Thanxs

  17. Jon Severs says:

    In the UK, on the NHS, my Sclerals were around 265 pounds for a spare pair… they cost, in my experience, about a bottle of saline a week (Ł2.95) and a bottle of cleaner every two-three months (Ł3.95)…

    Not sure on the C3R I am afraid but hope someone else can help with that

  18. thomas etchels says:

    hi everyone….. Im from scotland/dundee was wondering bout the scleral lense.does any body know if you get them on the nhs up in scotland?

  19. Jon Severs says:

    Hello Thomas,

    You should be able to yeah, but the trouble is, a lot of doctors don’t see the benefit of them, mainly caus they don’t ever ask you how you feel and don;t realise the difference they make to your life.

    Ken Pullum, the guy at Moorfields who is leading Scleral Lens stuff in the UK really, says persuading practitioners of the benefits is one of his hardest jobs. If your guys up their don’t do it it is worth contacting Ken to see if he knows anyone up in Scotland, or depending on how desperate you are, you could try and get a Moorfields transfer to see him, I think NHS contributes to travel….

    Have you got Keratoconus?

  20. thomas etchels says:

    hi jon….. Yes i have had keratoconus for about 4 years i’m 26 years old,there is a practitioner near me,im going to see him in two weeks time about them but don’t know how much they cost ,it would be great if my doctor at ninewells hospital can give me them.
    The keratoconus is quite bad in my right eye and gradually getting worse in left.iv’e ever only heard of the piggyback lense. Thanks

  21. Jon Severs says:

    Ah there’s a fair few alternatives. I had piggybacks, then i had small corneal lenses, then now got the sclerals. Best of luck, try and get him to let you test a few options to work out what gives you best vision

  22. Pedro Rosario says:

    Hi everybody.. I have keratocunus just in my left eye. In this moment I’m trying the kerasoft 3 and until I’m very impressed. This lens is very comfortable and can used for many hours. http://www.ultravision.co.uk

  23. Mellie says:

    I am a long time sufferer of Keraconus in both eyes, I was diagnosed at around 18 and now 11 years later I am almost a year out from my third (Yes third) corneal graft (Penetrating keratoplasty). The level of astigmatism is still off the charts in my left eye (this is the eye which has had 2 grafts) and a small cone has returned in my right eye (I had the PK done in 2001 on that eye).

    I have tried every trick, tool, lens and potion known to man. I have had lasik over the graft on my right eye, and the vision was great for around a year until the cone returned!

    so here I am back at square one, still unable to pass the eye test for a drivers license, and so now they are trying me on sceleral lenses. The lens for my left eye is GIGANTIC as it has to vault over the recent cornea graft. Putting them in is somewhat of an ordeal and if I wear them for any extended period of time getting them out is not much better. I use my fingers to put them in and my handy dandy plunger to get them out!

    The vision I achieve with these lenses is nothing short of phenomenal, especially considering that I have been looking at the world like I had vaseline smeared on my eyeballs for the last 10 years. BUT I just cannot get the comfort right, they iritate, I constantly get bubbles trying to put them in, if I wear them one day my eyes are too irritated to put them in the next day.

    Does anyone have any advice on how to make these lenses more comfortable/wearable?

    Thank you
    Mellie

  24. Jon Severs says:

    Hi Mellie

    Wow you have been through the mill! Three grafts is a lot to go through, have they told you why the other two failed?

    As for the Scleral lenses, the only advice I can give is patience and perseverence. They do iritate and they are daunting but my own experience is that, eventually, you can get them confortable. I upped my use of them by an hour each day over a long period of time and this seemed to work. If problems persist there may be something wrong in the fitting of them I guess? What really helped in putting them in was having someone film me put them in and i suddenly saw where i was going wrong!

  25. Richard V says:

    Hi dear friends,
    I live in Holland so sorry for my imperfect English writing.

    When I read the foregoing I am impressed about the perseverance of everyone, we must always be positive but realize that sometimes we are tired of our KC.
    I am 47, KC at both corneas, always corrected with lenses all types, normal and piggy back system (double lenses) in 1991 and 1994 the corneas are transplanted. from the transplantation till now I’ve used glasses, but lately my right eye cornea is not very stable, and very soon I will have sclera lenses in both eyes.
    I am so glad that these lenses have such extremely good results with vision and are also comfortable in the eyes but this is what I have heard and soon will experience by myself.
    Till last year I had a vision of 1.0 and today it is approximately .7 total at the best days, but there is variation every day, therefor I have 3 glasses to try in the morning and I take the best for that moment. (the 3 glasses all have the same correction but are mounted in different degrees in the frame, 3,5 and 9 degrees) This is because of the instability of the cornea.

    I am lucky that the sclera lenses (cost about 1200 euro each in Holland) are mostly covered by standard insurance. I will inform later about my experiences, can someone with experience tell me if these lenses can sit a whole day without refreshing the “inside fluid” in between.
    Thanx for replying,
    Richard

  26. Jon Severs says:

    Hi Richard

    I wear my scleral lenses for around 15 hours a day without changing the fluid, and have no problems! When I get back from holiday I will be putting some more guidance up about sclera’s so stay tuned….

  27. Matt says:

    Figured I would put out an update:

    Since my post back in July I have gone through numerous scleral lenses. My vision has been excellent with all of them, but the fit had to keep being ‘tweaked’.

    At this time, I have a lens that I am able to consistently wear 8 or more hours with excellent comfort.

    With earlier lenses comfort was ok, but trust me, when you find one that is right you will notice the difference. The change between my current lens, and the most recent lens prior was minuscule. An adjustment was made ( i can’t remember which) to one of the curves in the smallest way and it has made all the difference.

    With my previous lens, I had very good vision and was able to wear the lens for 8 hours, but it ‘pinched’ sometimes and left my eye feeling very raw some days. I also had to remove clean and replace saline sometimes mid-day.

    I have not had that issue with the most recent lens.

    The challenge with slcerals I think is:
    a) finding someone who knows how to fit them
    b) finding someone that is patient enough to work with you.

    My guy in upstate NY has been fantastic, but he has probably lost money in the process. I have spent about 500$ but have tried at least 9 lenses.

    Good luck to all those trying them, and if it doesn’t feel right keep trying. I was starting to become discouraged but stuck with it and am glad I did. I am now considering trying scleral lenses on my post transplant eye.

  28. Mellie says:

    Matt, Both of my eyes are post transplant (Having had 2 in teh left ey dude to complications) and the vision my Doctor is acheiving is phenomenal.

    I am glad you gave advice about persevering with the fit as we are having some problems getting it right and I know my doctor has just ordered my 5th set, hopefully these ones will work better although she told me her previous patient took 12 sets but is now deleriously happy with the fit that he has. It is hard trying to get that right fit and I am hopeful there is a light at the end of the tunnel.

    My Doctor decided to specialise in these lenses when she couldn’t find anyone in our area willing to do the fits, so I completely agree these lenses are all about patience and a good physician

  29. Matt says:

    Definitely keep working at it. Funny thing is with my last fit….

    I prefer my current lens – it is far more comfortable than the one prior.

    My doctor preferred the lens prior, he said that showed a better flouroscene (sp) pattern.

    He thinks my current fit looks a touch ‘tight’, but the difference to me in comfort is night and day.

    A couple other tips I can pass along:
    Don’t rely on the no rub cleaning solutions, in my experience they do not work well for rigid lenses of any type. Currently I am using Optimum ESC for my scleral and find it to be very effective.

    Also – oddly enough – drops cloud the lens up for me. I use no drops. Sometimes I will try a little fresh saline if I need it, but usually if I reach that point I just pop my lenses out, wash, fresh saline and reinsert.

    Use a preservative free Saline, I was instructed to use Unisol 4 and won’t use anything else.

    Lastly I have issues with ‘crud’ on my eyelids, don’t know if its allergies , genetic or what…. But I wash my eyes each time I shower with some J&J baby soap. I find this to help as well.

    I suspect there is a lot of trial and error here to find what works for you and it does require some diligence. Hopefully in the end you achieve quality, comfortable vision though…

    What sort of issues are you having with your lenses? Can’t get the fit quite right? What is the quality of vision without correction on your eyes, has KC returned at all post op?

    I was very lucky with my transplant, about 6 years now and no issues. I can actually see 20-30 with soft toric lenses, or glasses.

  30. Richard V says:

    Thank you Jon, will wait for that info, in the mean time have a good holiday!
    Richard

  31. Mellie says:

    I am having a lot of difficulty with the fit mainly, a small cone returned around 2 years post op to my right eye, it is small and low, and came back following lasik to correct some of the astigmatism in the eye. I can still get around 20-40 in my right eye with glasses, but with the scleral lenses its better than 20-20 if we could only get the fit right! we need it to vault the cone and allow fluid exchange, but not be soo big that is like a flying saucer and spinning around in my eye.

    The left eye is a whole different kettle of fish, I had the transplant done in england in 2007, and I knew something wasn’t right from day one, my physican (The same one who did my far more successful right eye) said it may have been bad donor tissue as he could not fathom why the vision was not any better after the transplant, I could not even see the top letter on the eye chart with glasses over 1 year post op! I was offered an intra ocular lens but that in itself while imporving my vision has a whole slew of problems and drawbacks so I decided against it!

    I then moved to the USA with my husband, I got a new eye doctor and in the USA the intra ocular lens was not an option as the ones to correct the level of astigmatism I have are not approved for use here.

    He felt my best option was to have the transplant re done and go from there. I had it done April 2010 as an outpatient procedure with concious sedation and I have to say the recovery while still unpleasant with the goo and the cleaning and the constant urge to itch your eyes was a MILLION times easier. Not having to stay in hospital and deal with the effects of genral anesthesia made it much more manageable!

    The lens in my left eye is BIG, really big, it has to vault over my remaining stiches as well as the now giant corneal graft (he had to go bigger than the original graft) my physician says it is snugger than he would like, but I feel its pretty comfy, I was advised to use induvidually capped preservative free drops to fill my lenses but it is expensive and frustrating when I drop them off my finger (this happens a lot becuase the lenses are steep!) I am definitely going to look into this unisol 4 as a bottle of saline would be much easier to use!

    My 5th set are currently being manufactured and hopefully will be a better fit!

    I will keep you updated

    Thanks
    Mellie

  32. Jon Severs says:

    Hi Melli, sounds like you’re on a road to good a fit at last! I have been through so many scleral lenses, think I am due a new one in a few months too! Will be writing more about this in the next few weeks

  33. Jeff says:

    Wow, I’m glad I found this site. I’m going to try my first scleral lens tomorrow and can’t wait. I was diagnosed with KC about 8 years ago and have done relatively well with an RGP lens in my right eye; however, the RGP-corrected vision in my left eye is not good enough for me to bother with wearing the lens.

    I’ve recently started piggy-backing an RGP with a daily disposable in my right eye and it is very comfortable with good vision. Dry eyes makes the piggy-backing somewhat uncomfortable by the end of the work-day, though, so it’s not ideal.

    My doc finally suggested that we try a scleral lenses and after reading all of the positive experiences on the internet I’m afraid I’m getting my hopes too high! I just saw a photo of a standard RGP next to a scleral and my jaw dropped. I did not realize how massive these things were…

    Thanks to everyone for sharing your experiences. It really helps to relate with others who are living with KC. Good luck to all of you in your quests for better vision!

    I’ll be sure to post an update after I’ve had some time with the scleral lenses.

  34. Jon Severs says:

    Glad you find the site useful, main thing to remember with scleral lenses is patience, it takes a long time to get a good fit and a long time to get used to them, but the hassle is well worth it! Will post up some more stuff on slceral lenses next week, including a video of putting them in and taking them out as it took me ages to get it right without getting bubbles beneath the lens!

    Look forward to hearing how you go, good luck!

  35. Matt says:

    Jeff,

    Whereabouts on the planet are you?

    Good luck with your appointment, be advised, you may need multiple tries to get it right. I too experienced ‘jaw drop’ at the first suggestion that I try the sclerals. My logic was that if my tiny lens is so painful, how could something that large possibly be better. I was completely wrong in my assumption! There is a learning curve for insertion/removal but once you get the hang of it (assuming you achieve a good fit) you will be surprised how comfortable they can be. I honestly don’t know they are there most of the time.

    I have found very few online resources for scleral lens wearers, so please report back so we can compare notes and offer tips.

    Again… Best of luck!

  36. Jeff says:

    Well, I ended up trying on several different lenses in each eye and as far as first impressions go I was pretty happy. The first lens that we tried in my left eye provided better vision than I have had in that eye for years! Alas, the lens wasn’t a good fit, so we moved on to another one which didn’t provide nearly as good of vision (but the fit was better). For my right eye we went through the same two lenses and the latter was also a good fit for my right eye. Vision wasn’t as sharp through the scleral as my old rgp, but it was definitely more comfortable. We did the whole eye-chart thing with each eye and we got my right-eye to 20/20 (though it didn’t seem as sharp to me as with the rgp) and my left eye to 20/30. The doc put in an order for my first set of scleral lenses which I’m sure will have to be tweaked some more for another set (ad nauseam). I’m hopeful that we can get my right eye to as good of vision as it has with the rgp and that my left eye can tolerate the scleral for all day wear.

    I didn’t have too much trouble inserting the lenses, though it was a bit awkward to have to tip my head and down and bring the lens up. Definitely a two-handed job. I’ll post an update after I’ve gone through a couple sets of lenses to let everyone know how it goes. I’m eager to try them out in the real world!

    Matt, I live in Utah, USA.

    -Jeff

  37. Matt says:

    I am guessing he had you putting in trials, don’t worry too much about your vision quality with those as he can adjust your power to fine tune that once he gets the fit right.

    I have found the vision with my scleral to be as good as I ever had with RGP, and the comfort is 10x better.

    Good Luck with next round!

    PS – Reason I asked is I had a friend named Jeff that was diagnosed around same time you mentioned. He is in the Northeast though….

  38. Jeff says:

    Well, I got my first set of scleral lenses yesterday. The vision is fantastic and they are very comfortable. When I first went outside with the lenses I was amazed at how sharp the world was (it’s weird how you forget these things!) I’ve never had good luck with my left eye in RGPs, so I never wore a lens in that eye. Even with a scleral lens my left eye is not as sharp as my right, but it’s a huge improvement over no correction and the lens was instantly comfortable.

    I was able to wear the lenses for 6 hours yesterday and have had them in for only a couple of hours this morning. My biggest concern right now is that my eyes get very tired (though there is no pain, just tiredness). I’m hoping this is just something that my eyes will adjust to over the coming days/weeks. I was able to get my right lens out fairly easily by lifting it up from the bottom edge with my finger. The left lens, however, was not nearly as easy to get out. It was actually quite painful when I tried to lift the bottom edge with my finger so I resorted to the plunger. Though I sucked on to the lens on the very bottom edge, it did not want to break it’s seal on my eye! When I finally did get it to pop off it really pulled on my eye. I’m assuming this is a problem with the fit which can be resolved with a tweak to the lens. I have my next appointment in a few days to evaluate the fit/vision.

    In everyone else’s experience did it take awhile to adjust to these lenses? It’s not quite like getting used to RGP (which for me involved getting used to a foreign body sensation), this feels more like my eyes have been berated by wind for several hours (does that make sense?). My eyes weren’t very bloodshot last night when I took them out, but they were happy to be free of the lenses.

    So far my initial impressions are extremely positive. Assuming my eyes adjust to the tired feeling, I think I’m going to love these things!

  39. Richard V says:

    Hi,
    Last Tuesday I’ve got my sclerals for both eyes. What a vision, incredible. With glasses my vision was measured as .6 and with the scerals 1.5! super vision! I feel like a tourist in my area and house with this vision! Today I wear them 11 hours. every day + 2 hours. Every day my eyes feels better,. Today with 11 hours it feels very comfortable, and even without taking them out in between and without refilling the lenses. I have rather small eyes so to open the eye big enough for placing this lense ones is almost impossible for me. For me the easiest way is to start placing the lense in the upper part of the eye and secondly I draw a little on the downpart of the skin under my eye and the lense is placed. When doing this horizontally there are no bubbles. I use a mirror with enlarged view, so the eye looks much bigger which makes it a lot easier. Before I used many types lenses including piggy backs but nothing can be compared with these sclerals, not the vision and not the comfort. Also Jeff, I wish you the best with your sclerals I hope for you it works out same as for me till now. Thanks for everyones experience at this side, it feels I am not alone!

  40. Jon Severs says:

    Hi Jeff

    Yep, I got the beratd wind feeling and still do if I leave them in too long! You’ll also ntoice if you do leave them in for an extra long time your vision won’t be as good the next morning. When I say a long time, though, I comfortably where my lenses for 15 hours a day! If they do get soar, I just stick a couple of drops of saline in and that tends to sort it.

    One thing you might notice is gunk forming in the saline and clouding vision. When you replace the saline, all is fine till it gunks up again. This is where the protein builds up. You can stop this by putting the lenses in a saline bath with a protein remover tablet in it. The problem disappears :)

    As for getting them out, I lift my top eye lid, in the corner by my nose, push up til my finger rests on top of the lens itself, press gently and move my finger across the top of the eye, so dragging the eye lid with it. This pops the lens out easily every time. Will try and put a video up of this.

    Best of luck

    Jon

  41. Jon Severs says:

    Hi Richard, I also put the lens in how you do! It gets to become second nature :)

  42. Karri says:

    I followed your blog for the last couple months. Long story short: I tried the msd (scleral) lenses. They dragged my lower lid down. Not only did my eyes look freakish, I felt like they dried out right away. They were uncomfortable for me. Did I not give them enough time? Did any of you find the lid pulling in your experience? I have good vision with glasses, so I am not too concerned, but would like to have options.

  43. Matt says:

    What led you to try Scleral lenses? It would seem that if you able to achieve good vision with glasses that soft contacts might also be an option for you (layman’s perspective).

  44. Deb says:

    Hi everyone
    I am 34 and was diagnosed 12 years ago. I am getting my new scleral lenses tomorrow. They hav been fit previously by a specialist here in Brisbane – QLD – Australia. Problem is that they are very expensive ($1500) and not covered by insurance AND I had to sign a disclaimer to say that I would still pay even if I wasn’t able to tolerate the lenses or if they didn’t fit correctly. Still – it’s cheaper than a transplant and I will be evaluated by cross linking if I can tolerate the lenses (apparently I’m not really viable but the doctor is positive he can try it). Hopefully all will be well! I’m really looking forward to wearing a pair of sunglasses and being able to see my 1 year old daughter properly! I will keep you posted on my success. I had no luck with the RGP – my eyes are just too sensitive and they kept falling out of my left eye – a very expensive and frustrating exercise! At least the sclerals are hard to lose!

  45. Richard V says:

    Hi Deb,
    I am sorry for you that these sclerals are not covered by your insurance, we have more luck with insurance in Holland, nevertheless when you will have the same experience than me it will be the same than with buying a Rolls Royce automobile. You forget the price and enjoy the comfort and quality. I wear these sclerals since 19 April last and my eyes tolerate them well, also the vision is very good, much better than with many different type of lenses tried before, so I am very satisfied till now. The first days where difficult to insert them without bubbles in the eye but experience will solve this surely, secondly my eyes feel more tired after a day wearing but I think that this will improve in the near future. Wish you lots of Success! and indeed, I bought myself also a good pair of sun glasses which I had missed a long time :)

  46. Jon Severs says:

    Hi Richard/deb

    Thanks for posting your experiences on the site! Richard, great news that they are working out for you, deb I wish you the best of luck! Please do let us know how you go and any probs etc I’m sure one of us will have experienced the same thing!

    Sent from my iPhone

  47. Karri says:

    Sorry for my absence. Soft lenses are not a good option for me. I can wear glasses – not the best vision, but workable. But the soft lenses (any type) spin like crazy, so I have blurry/clear/blurry/clear vision. I find myself repositioning them all the time. They also tend to be a little uncomfortable at times. Not sure why.

  48. Pete says:

    I am 34 and was diagnosed with Kerataconus a little over a year ago. (I had 20/20 until age 27 or 28, so I guess I’m lucky to be a late onset patient). My left eye is much worse than my right (I can read with my right eye without correction.. although I have to squint).

    I started with Synergeyes for the first year. I wore an A lens in my right eye and a KC lens in my left…These were quite comfortable once I got used to them..although I had to have them refitted a couple of times. My optometrist switched me over to Duette Synergeyes lenses a few months ago which were even more comfortable. A few weeks ago at my regular check in she examined my eyes and said that they were getting too dry with with the synergeyes lenses and said we were going to try scleral lenses. I’ve been wearing them for about a week now and I find them to provide even better vision then the synergeyes lenses and they really aren’t any less comfortable. They are a bit harder to put in.. but I picked it up after a day or two.

    One thing that might help others, my lenses each have a small hole for fluid flow to keep my eyes wet.

    My optometrist has me using only artificial tears (blink or systane)…. which is actually the expensive part of wearing the lenses (the lenses themselves are only a few hundred dollars and she charges a hundred or two once a year for fitting)… My wife actually got our insurance to pay for the lenses once we provided an opthamologists note that they were medically necessary (other people in the USA might want to look into this.. my wife had to bug the insurance company for a few months.. but they did pay!). Note that my lenses may be less expensive as my kerataconus is not that severe (I’ve been told I’ll never need a transplant and will just be able to wear contacts the rest of my life). My opthamologist did say that if he ever sees a big change he might have me undergo corneal crosslinking, but that I don’t really need it yet (and supposedly KC stops progressing once you get near age 40)

    My advice is find an excellent optometrist who specializes in contact fittings for corneal conditions like KC… I live near Chicago and the woman I see is absolutely fantastic….. it makes a HUGE difference to see an expert… to give you an idea it took her about 5 minutes to look at my eyes and come up with perfect measurements when I put the scleral trial lenses in

  49. Pete says:

    I am 34 and was diagnosed with Kerataconus a little over a year ago. (I had 20/20 until age 27 or 28, so I guess I’m lucky to be a late onset patient). My left eye is much worse than my right (I can read with my right eye without correction.. although I have to squint).

    I started with Synergeyes for the first year. I wore an A lens in my right eye and a KC lens in my left…These were quite comfortable once I got used to them..although I had to have them refitted a couple of times. My optometrist switched me over to Duette Synergeyes lenses a few months ago which were even more comfortable. A few weeks ago at my regular check in she examined my eyes and said that they were getting too dry with with the synergeyes lenses and said we were going to try scleral lenses. I’ve been wearing them for about a week now and I find them to provide even better vision then the synergeyes lenses and they really aren’t any less comfortable. They are a bit harder to put in.. but I picked it up after a day or two.

    One thing that might help others, my lenses each have a small hole for fluid flow to keep my eyes wet.

    My optometrist has me using only artificial tears (blink or systane)…. which is actually the expensive part of wearing the lenses (the lenses themselves are only a few hundred dollars and she charges a hundred or two once a year for fitting)… My wife actually got our insurance to pay for the lenses once we provided an opthamologists note that they were medically necessary (other people in the USA might want to look into this.. my wife had to bug the insurance company for a few months.. but they did pay!). Note that my lenses may be less expensive as my kerataconus is not that severe (I’ve been told I’ll never need a transplant and will just be able to wear contacts the rest of my life). My opthamologist did say that if he ever sees a big change he might have me undergo corneal crosslinking, but that I don’t really need it yet (and supposedly KC stops progressing once you get near age 40)

    My advice is find an excellent optometrist who specializes in contact fittings for corneal conditions like KC… I live near Chicago and the woman I see is absolutely fantastic….. it makes a HUGE difference to see an expert… to give you an idea it took her about 5 minutes to look at my eyes and come up with perfect measurements when I put the scleral trial lenses in

  50. Hi everyone! I quickly went through some of your comments on Scleral Lenses and know you probably have a lot of questions about them. I have been fitting them for the past 5 years and have found them to be so much more beneficial for the patient in terms of visual clarity and comfort versus the standard corneal rgp or products such as Synergeyes. There are many applications that the lenses can be fit on, but Keratoconus is probably the most common due to its prevalence in the general population. However, Post-Lasik thinning and ectasia is quickly becoming an issue as well.

    I am writing this so that if you have any questions that you need answered, I would love to help!

    Dr. Mike
    Charleston, South Carolina

  51. Ruben says:

    Pete thank you for your comment and i will bug the everliving crap out of the insurance company now you have stated that they will pay for it. I am 33 yrs old and have had Keratoconus for 14 years now. Ive been wearing the RGP lenses and quite frankly am sick of wearing them. I hate having this eye disease but realize people have far worse life long illness then me so i keep my thoughts to myself. Went to several different doctors and some talked about the Scleral lenses so i am going to give it a try. I read nothing but positive comments about them. I Live in North Carolina and go to UNC chapel hill for my eyes. I was wondering if the Scleral lenses improved night vision as far as halo affects and double lines caused by lights? they are going to cost me 500 bucks and 300 for a fitting fee. My insurance is not going to cover them but the eye doc is suppose to send a request for predetermination to see if it can be covered does anybody know of any vision insurance companies that will pay for them around my area??

  52. Matt says:

    Definitely push your insurance company. Contacts for kc are medically necessary and they should cover much if not all of the cost. Regarding night vision…. I can’t say enough good things about how sclerals helped me, including halls. Night and low light vision was previously a major challenge, driving at night in the rain was borderline suicidal. With my scleral lens howeverthis no longer a concern. I have very little to no halo affect now. Good luck to you…

  53. Ruben says:

    thanks alot Matt and good luck to you..

  54. Mohamed says:

    Greeting from Singapore, this site is great!! I was diagnosed with KC when I was 19. I have been wearing Rose-K lenses until now.

    Now at 26, I am going for partial thickness corneal transplant (left eye) due to the high risk of Hydrops developing. I can’t believe you actually sat out Hydrops and never went for surgery!! That sounds downright scary to me.

    If I do need lenses to correct my vision after the transplant, I will be sure to ask my doctor about scleral lenses.

  55. Richard V says:

    Dear All,
    I have a problem wearing sclerals and want to post this hoping on any comment which may be helpfull solving the problem. I wear scleral lenses since half April. First month was great, vision extremely good and comfort OK too. Approx. 2 weeks ago the comfort went down. My left eyelid swoll a little which results in some force at the lense. Also the eyelid hanged a little bit halfway the eye. Also the lenses sometimes in both eyes felt sticking at the eyes which makes it very uncomfortable, and sometimes there formed a blurry cloud between the lense and the eye. I went back to the specialist and was told allergy outside was the reason and got medicine against allergy. It didn’t help, it makes the eye dryer and was not able to wear the lense. I could only wear the lenses some hours, and in the first month even 15 hours a day was no problem at all. So, I thought to give the eyes one week rest without lenses and than start again. Yesterday I started again putting the lenses in and after one hour it felt in both eyes uncomfortable and the eyelid left already was swollen again and I decided to put them out. But than I experienced a huge pain, red eyes, swollen eyelids so went direct to the hospital. Left cornea (corneas are transplanted in 1991 and 1993) was swollen also and had rejection signals. Medicine worked out and now the eye is OK again luckely. Personal I think I developed a allergic against the Ote Saline, the fluid between the lense and eye. (Is there an alternative fluid?) Sounds the story maybe familiar to someone. I am 47, and for the transplantation I wore small normall lenses without allergic problems so I assume there is no allergic for the lensematerial itself. I would highly appreciate if someone who could say anything about this subject will respond. My view was extremely good with sclerals so…..
    Thanks & Regards,
    Richard

  56. Christine says:

    Very, very glad for the comments and expeiences about the scleral lenses. I just started wearing them a few days ago and after removing them I’ve been in a blurry haze. My eyes cannot seem to lose the blur once the lenses are removed. Does anyone know why this may be occuring?

  57. Jill says:

    I have only had my scleral lenses for a few days. One of them seems to “leak” saline before I can put it in my eye way faster than the other. Is this normal or do you ruining might be a defect. I though it was odd since my other lens does not do this.

  58. Jon Severs says:

    Sounds like it doesn’t fit, it can take a few goes to get the best fit. A tell tale sign is bubbles in the vision that develop during wear

    Sent from my iPhone

  59. Diesel says:

    I am wearing sceral lenses mainly in my right eye were the Keratoconus lies, but as well in my left eye cause i hate RGP’s. I love the fit and the vision, but i despise putting them on, I take on average about two and a half hours trying to get them in. any tips on making it easier?

  60. Jon Severs says:

    It took me a few months to perfect it, if it doesn’t happen after ten mins leave it for a while as any longer your eye will be swelled up and the fit will get more difficult

    Sent from my iPhone

  61. Maria Antao says:

    My name is Maria and i have been living with KC for 23 years. I had my 1st transplant at 14 on my right eye and the left eye done when i was 18. Since then I have tried glasses, lenses, lasik, and other procedures. My left eye is stable but my right eye is always getting worse to the point where i can’t see out of it. I was just told about sclerial contact lenses and am willing to give them a try but worried about the results. It seems that alot of fittings are needed and how long do they last are scripts required for the vision? I need feedback so that I may make a good decision.

  62. bob archer says:

    Hi all. Glad to find this site-have things changed and improved.

    I’ve had kc for 50 years starting at age 17; had had several ineffective eyeglass scripts but the kc went undiagnosed until age 24 (pp oculists), while training in dental school. Got adequate vision with rigid contacts. Within ten years eyesight became so bad, I couldn’t practice. Twenty-seven years ago, a corneal transplant was conducted (its still good) on left eye due to apical scarring. Sight has been corrected with gp to 20-40 variable to 20-50 left and 20-30 to 20-40 right. Visual acuity varies hourly and daily, but the steepness of the cones seem static.

    Last spring had to deal with cataract in right eye-that improved acuity to almost 20/20, but the lens hurts more, but not quite enough to seek immediate relief.

    Knew there were scleral lenses but piggybacks and other treatments are new to me. I would love to be 20/20 or better. Have you any points to make for scleral, piggies or leave it alone as good enough?

  63. jesse says:

    i have KC and no insurance, my life has been pain, i have an old set of rgp lenses, and i cant tell you how uncomfortable they are. what do i do? is there any other insurance i could buy, i was laid off my job in march havent had any luck with anything yet, someone please help

  64. bhargai says:

    what solutions best suite with scleral lens for cleaning and storing.

  65. Jon Severs says:

    I use Eyeye cleaner and lens plus saline solution. Then every couple of weeks I bath them in saline with an amiclear Protein remover tablet

    Sent from my iPhone

  66. Richard V says:

    Hi all, I tried full sclerals this year with 24mm diam. and although the vision was really really perfect my eyes unfortunately didn’t accept them after approx. 2 months anymore and had to stop wearing them.

    But, after the dark there is always sun:) my specialist thinks after investigation to solve the problem mainly with mini-sclerals. left eye lens 17mm, and right eye lens 14mm. I have tried test mini-sclerals 4 hours in the hospital and no bad reaction came up so soon my vision will improve again with serious steps. I will let you all know my experiences, in the mean time if anyone has any advice for me related to the mini sclerals please inform.

    Can I expect same vision with mini sclerals compared with the full sclerals? the test lenses didn’t had the good correction and this specialist which is another as with the full sclerals had a different method so till I receive the mini sclerals I am not totally sure. Thanks for this site !

  67. DPeraza says:

    Hi all: Found this site while researching scleral lenses. I was diagnosed with KC +/- 15 years ago. I’ve tried RGP (hard) lenses Synergeyes hybrid lenses and even regular soft lenses but for some reason my eyes become irritated after a few months of use (perhaps dry-eye-syndrome). I am trying Scleral lenses after many years of not wearing any contact lenses. Test-fitting was done on Nov. 12, 2011 and it went well. I can honestly say the lenses are extremely comfortable. For people looking for a specialist in South Florida I can recommend Dr. Andrea Janoff in Nova Southeastern University. She specializes in contact lens fitting. Another alternative is Bascon-Palmer eye institute in Univ. of Miami but I do not have visited that institution. My lenses cost $700 and the comprehensive test and lens fitting session (lasted 4 hours) was $230.

  68. malcolm cohen says:

    i have just started wearing a miniscleral in my right eye ,over a graft,.for the last 4 years i have been piggybacking but recently it started to cause too much staining on the cornea,.the scleral i suppose is ok, some days i do not feel it at all and others days there is minor discomfort.but it does cause the side of my eye (by my nose)to become very red(if i did not know it was due to the lens i would run to the hospital thinking i had a rejection)the redness fades generally by the next morning.
    does anyone know where i can purchase a basket for cleaning with aosept(hydrogen peroxide)the basket it comes with is too small
    Malcolm (Israel)

  69. Jon Severs says:

    Hi Malcolm

    The easiest way to clean sclerals that I have found is using EYEYE http://www.postoptics.co.uk/solutions-eye-care/cleaners-salines/crystal-cleaner.htmlwhich you massage into the lens with your finger tip and then you clean off with Lens Plus http://www.postoptics.co.uk/solutions-eye-care/cleaners-salines/lens-plus-ocupure-large.html

    For storage, you store them dry, so just in any small box that is cushioned so the lens does not scratch. I have a small box the lenses came with and they just sit in there happilly overnight and I clean in the morning.

  70. David Mazo says:

    Hi, i have been using scleral lenses for several years now. They are great, i can actually see 20/20 and super clear. the only problem i have with them is the ulcer it has made in one my eyes, due to the daily use and the scraping it makes when putting putting them on.

  71. Ronnie says:

    I had a terrible time inserting my lenses until I came up with a solution some of you may want to try. Use a small o-ring from a faucet repair kit. Find one small enough to lay flat on your index finger tip. Place the lens in the o-ring and fill with your choice of solution. The o-ring will help hold the lens on your finger tip. Now just lean your head over a mirror laying flat on the counter top and use the remaining fingers on the hand with the o-ring to pull down the lower lid and the other hand to pull up the upper lid and insert the lens. You will be surprised at how much better you can see what you are doing. The o-ring may stick to the lens but you can remove it by blinking or you can just pull it off. This did wonders for my mornings by being able to insert my lenses without a great deal of time and trouble.

  72. Jon Severs says:

    What a brilliant idea!

    Sent from my iPhone

  73. Kylie says:

    Hello all,

    I am also a long term kc sufferer. Mostly in my left eye and developing in my right. I had corneal cross linking done last May, which was an experience!! However I shouldn’t complain as my sister has had a corneal graft in both eyes and it seems to be a much harder process.

    I was fitted with mini scleral leneses yesterday. Don’t know how I feel about them as yet. I find that my vision is still very blurry and I am even squinting to write this. I was hoping to have great vision straight away with these ones. They are pretty comfortable but I am wanting to put my glasses back on because I would see much better with them.

    Did anyone else experience this problem? I am trying to deal with it and just stick it out.

    Kylie

  74. Jon Severs says:

    Hi Kylie

    In my experience, if the lens fits and the power on the lens is correct, if you’re putting it in correctly you should be able to see. Hence, if it’s blurry and you have no bubbles behind the lens when it is in the eye I would go back to your optician to check the fit and the power on the lens – it too me about three fittings to get one that was right!!

  75. Kyle says:

    I work in the US for an optomitrist who fits scleral lenses on our KC patients. What a rewarding job to help people to see! I love your sight and all the positive comments. Our insertion and removal techniques are different, (we use a”plunger” to insert and remove) and our care regimen is different also. Sclerals are an amazing thing!
    Thanks for sharing!! Kyle, Longmont Colorado USA

  76. Jon Severs says:

    Nice to hear Kyle! I know a lot of US people who have read the website don’t know about Sclerals… Good to hear you are helping people with them

  77. Thank you very much for the information and sharing your life with us. I know little about what my husband suffers through and I think your blog will help me understand and be more compassionate to his situation.

  78. Vision 4 All says:

    I have been moved by all the comments on this blog. I am starting a discussion forum http://newintacs.com/keratoconusdiscussionforum/ to help the patients in United states.All suggestions are welcome.Feel free to ask any questions, post your experience.
    p.s
    I was surprised to know my patient her in los angeles was paying $3500 for Scleral Contact lenses

  79. Mark says:

    I LOVE the vision I get from this lens (only wear one), but I can’t keep the lens from clouding up after about 45 minutes of wear time. So frustrating. I have tried different cleaning products and everything. The lens fits great, but the darn thing clouds up so fast. :0(

  80. Jon Severs says:

    I had that problem and a preservative remover solved the issue for me. I buy Amiclair http://www.postoptics.co.uk/solutions-eye-care/cleaners-salines/amiclair.htmland use it once a week and it seems to solve the problem. If it persists still it may be you are touching your eyes too much, the lens is not fitting correctly, your cleaner is not good enough (i use EyeEye cleaner)… loads of things!

    I change my bedding once a week, change towels once a week and alwyas make sure I have clean hands before they go anywhere near my face! Overwear doesn’t help either…

    Hope you get it sorted!

  81. Matt d says:

    Mark, I also had that problem and as I recall it ended up being a fit issue. The lens felt fine and vision was good but there was no room for fluid movement so the lens clouded up. My current lens I wear all day with no issue.

    Another thing I learned which was counter intuitive – I do not use rewetting drops. They always cause my scleral lens to cloud up. If my eyes get really dry , which is not thst common, I pop the lense out and clean it then put itback in with fresh saline.

    Last tip – use preservative free saline. I use unisol 4

  82. Jon Severs says:

    Ah yes the rewetting drops is a great shout – I also avoid them for the same reasons!

  83. Mark says:

    Thank your guys for the response! My doc fitted me four different times. He says the fitting looks good. So, I don’t know what else I can do with that? I have tried Lobo, that Boston stuff, Clear Care and even Opti-Free. I also use Unisol 4. Heck, I even tried using Refresh Plus in the bowl. I haven’t tried that protien remover tablets yet.

    Also, when you were having the same issue, did you notice a rainbow around lights at night? All I have to do is remove the lens and add fresh fluid to fix the issue, but this isn’t very realistic every hour! :0)
    Thank you guys and gals!

  84. Jon Severs says:

    Ha yes I remember changing every hour – those tablets really did fix it for me. Didn’t get any rainbow affect though, just halo.

  85. Matt d says:

    Yeah I think I was fitted with at least 6 lenses and even the one I have now my Dr wants to tweak a little. For me even very minor adjustments in fit have made significant differences in comfort and vision.
    Has your Dr fitted many patients? Experience
    seems to be quite limited from whati have seen….

    Is your lens fenestrated? (small hole in lens)

    My first few were and then the manufacturer decided to getrid of fenestrations alltogether. I don’t know how much this might play in to the hazing…

    Other thoughts, do have seasonal allergies?Spring is always a tricky time for me and my contacts. Proper meds including eyedrops definitley help.

    If it helps at all this is the routine that works for me:I soak my lenses overnight in optifree repleneish (not express,that stuff is no good)
    In the morning I puta drop of optimum rewetting solution in my eye (or allergy drop during allergy season) then I was the lens with optimum esc, fill with unisol,inser….

    Figuring out what worked for me took a lotof trial and error, I think different people need different solutions, but the one thing that helps for me the most is cleaning in the morning just before putting in my eye. I think the soaking solution was contributing to hazing.

    I think one of the challenges with sclerals in particular is commitment it requires from the practitioner and the patient. My Dr has been fantastic and replaced many lenses for me and listened to me throughout the process. I was getting fustrated in early phases of the process because it was starting to feel reminiscent of past failures, (rgp lenses, piggy back, synergyes) but he helped me along and I have been over a year with this lens an the best vision I have had in 20+ years.

    Good luck, my apologies for sny typos, doing this on my tablet and it is fighting me every step of the way :-)

  86. Larry Louisy says:

    I’m 44 and have had KC for over 10 years. I’ve used the piggy back method for most of that time and am not just trying the Sclerals. I’ve oly been trying the for the past 4 weeks but have had issues with sensitivity to light and increasing soreness throughout the day. Different fittings have lessened the effects but they persist. I’m starting to get discouraged but this website has been incouraging.

  87. Jon Severs says:

    It took me around three months to be entirely comfortable, building up the wear time each week. I wish you the best of luck, keep trying as it does reward you in the end.

  88. unpsoken says:

    Hi!!

    I have keratoconus too!! But mine is really advanced I wear the same lenses and just wanted to say if anyone is having difficulties inserting their lenses, an awesome idea would be to get a little plunger (available from most opticians) I use one its so much easier and eliminates the possibility of getting bacteria onto the lens.. :) :)

  89. emilyessely says:

    I was diagnosed with keratoconus around the end of high school/beginning of college, had soft lenses for awhile and then moved to RGPs by the age of about 23ish, I think? I never liked the RGPs; they always caused some pain by the way they sat on the corneas, etc., although more recently a new doctor “fluted” the sharp edges out a bit and the pain was less. Still – I had constant issues with dry eyes (stashes of eyedrops ALL OVER THE HOUSE and office and in my purse) and getting grit in my eyes, and having stabbing pains at random times, or terrible discomfort if I hadn’t gotten enough sleep one night or whatever. Or my eyes randomly tearing up from them, which is not cool when you’re like, trying to talk to your supervisor at work or going to an interview or something. And when tired or if it was windy or for various other reasons I’d have major issues with starring and clarity of vision as well.

    I then had corneal collagen crosslinking in 2010 and 2011 (both eyes), which has halted the degenration thus far (hooray!) and did improve my vision in my worse eye, although it’s still atrocious. I got fitted for RGPs again after (twice or so already), but recently with my eyes still changing from the surgery, I needed another new fitting and the (other) doc suggested sclerals (I have 4 eye doctors).

    Just got my first set yesterday, and although he wants to adjust the prescription more after looking at how these fit, and it’s only Day 2 with this temporary pair, so far the difference is phenomenal. I wish I’d gotten these YEARS ago. I am still using eyedrops a few times a day, but the doc thought I probably would feel the need for that and then eventually get used to not needing them much or at all. Overall, the improvement from how dry my eyes used to get is very good, and the comfort is AMAZING. I can’t even tell they’re there, basically. Also the vision in the eye that is almost the right prescription is much sharper than anything I’ve had lately, and I expect that the right will be the same once I get the next (hopefully final for now) pair in a few days. I am currently very very happy; sort of ecstatic, really. :D

    Also, re: putting them in, what helped me a TON is using a suction-cup plunger to put them in. I was having NO luck using my fingers, but with the plunger it’s been fairly easy (after the first 4-5 practice rounds) to get them in after 1-3 tries to ensure no air bubbles. The way that plunger works is it has a hole in the middle, and you squeeze just a little before putting the contact on the plunger, to get it to stick to it; then, (with your head down, of course, to keep any saline from spilling out of the lens) when you feel you’ve got the contact on your eye, you squeeze the plunger all the way to unstick it from the contact, and the contact stays on your eye.

    I use a regular plunger to remove them, and it is fifty thousand times easier and less painful for me now than it was with the RGPs, which could sometimes take me about 20 minutes of agony to get out. The trick with this is to put the plunger near the outside edge of the contact, not the center, when you’re removing them.

    I live in hope that when I get the next pair this week, they will be perfect, and I will have better comfort AND vision than I have in years.

  90. Emily says:

    Aaaand I didn’t mean to post my name as “emilyessely,” hah. Oh well.

  91. Jon Severs says:

    Thanks Emily – great to hear your story! Glad you have had a breakthrough with the sclerals :)

  92. Cindy Wex says:

    Ive used scleral lenses for nearly a year after receiving two cornea transplants. My doctor was at the point where he was going to sign me up (or “out” as I saw it) for disability and I would have to stop teaching- no way. My last hope was using scleral lenses. Changed my life. It did take a bit of time getting used to them and I lost one down the drain within the first 3 hours of owning them ($500 down the drain)- however, I couldn’t live without them at this point! I use a little “blue plunger” to insert and a little “orange plunger” to remove them- I saw that you do this using your fingers and that seems like a PAIN!! Hopefully, you can find a plunger to make your life easier. To anyone in a similar situation, GO FOR IT! They are worth the money and the time it takes getting used to them! I love mine!

  93. Dave says:

    Hi,

    I also have been having some issues with lens clouding. Only get about an hour of wear time before I am seeing the fog! The lens is a smaller scleral. Say maybe a mid size. Doc decided to try a full size scleral with fenstration. The other one didn’t have them and I filled it with saline. When he fitted me for the new full size scleral, he didn’t put any saline solution in the bowl. He said the type of lens he was fitting me for didn’t require it. Told me that my natural tears should work or something like that. Has anyone ever heard of this type of scleral before??

  94. Jon Severs says:

    Never heard of that! But clouding was common for me if 1: the lens was I’ll fitting and 2: if I didn’t use the protein removers on the lenses weekly.

  95. Dave says:

    Hmm, ok. I actually found an article online about this type of lens today. Been searching! Haha. No saline required because of the holes and it’s not sealed like a non fenstrated scleral. Still wonder how it works though? The trial lens felt ok, but my first lens was very uncomfortable and the vision was terrible. Bubbles right dead in the center that wouldn’t budge. Sent it back for some tweaking.

    I am also post surgical, so I read that sometimes contributes to the clouding. Not sure why? Just my bad luck I suppose? :)

  96. Jon Severs says:

    Ah keep me posted on that lens type – never heard of it but sounds interesting! Hope they get one that works for you.

    As for post-surgery – I’m not sure how that affects but someone on here might!

  97. Dave says:

    Will do! Thanks

  98. malcolm cohen says:

    hi
    a couple of years ago i tried a fenestrated scleral that did not need saline it was invented by Donald Ezekiel and manufactered by a company called gelflex in Australia it is supposed to be the Rolls Royce of all scleral lenses.I did not have much success with it and my surgeon actually forbade me to continue with them as he said it was rubbing on my graft.i now wear minisclerals with much success although at the beginning i had issues with red eyes and also fogging.i experimented with diffferent brands of saline and some apparently seem to cause less fogging.I am able to wear them for over 12 hours a day and i do try to change the saline once a day
    Malcolm (Israel)
    good luck

  99. Dave says:

    Malcolm,

    Yes sir, that sounds like the one. I really hope this one works, because I have had a lot of issues with mini sclerals. Everything from fogging to distortion. I really don’t know which other solution to use help battle the cloudiness? I have read clear care would help, but it didn’t. I understand it can be a fit issue, but I have had multiple fittings from different docs. What other type of issues were you having with the non saline scleral? Was it still clouding up on you?

    Thank you very much for your time!

  100. Prue says:

    I had grafts 17 and 16 years ago, but the vision has been on a downward slide for the last 3 years. I went to the optometrist and he says glasses are done for need to look at contacts and he is thinking sclerals. He wants me to see my opthalmologist to check my grafts are secure as he has some concern about them dislodging my grafts. I have 3 school age kids and a husband who is away a lot, no public transport either. driving is a necessity for me, so I am off to see my dr to check then either lenses or new grafts.
    Gotta love KC. I laugh a lot about it, the alternative is tears.

  101. UA says:

    I have been fitted with sclerals a little over a month ago. I am using the plunger to insert / remove the lens. The first day, I was able to wear the lens on my own at the clinic without any problem. however, from about a week later, it has been taking me so many trials for me to put them on without any bubbles. The comfort and vision are lot better and i am liking these lenses. But the only think is the daily hassle of putting them on. I dont understand where i am going wrong while inserting them. I look sown straight into a mirror while putting them on but it is only after some n number of trials that they go in without a bubble. Any suggestions on how to wear them with the plunger method and not getting a bubble would be sooo appreciated.

  102. Merfat says:

    Hello all, i have also experienced some difficulties with the lenses. I’ve got them through a doctor in Malaysia, i went to do the fitting there, at first they were not as comfortable but my Dr. said that i will get used to them. it’s been 2 months now or over and now i can’t even put them on for longer than an hour! not so sure is it the solution im using to clean them or something else!
    when i asked my Dr. she said this shouldn’t happen.. but it’s happening not to mention my eyes go so red around the lenses! and my eyes start to feel like burning !
    surely the haze still there since day one!..
    my biggest problem is i don’t have a specialist in my country to consult .. that was the reason i flew to malaysia from Saudi to get the lenses!!
    note that I’ve been suffering from this and wearing soft, hard and now these lenses for over 10 years!
    any suggestion please ?
    im 34 years old female.
    Thank you all

  103. Merfat says:

    hi, no body :(

  104. Jon Severs says:

    Hi Merfat

    I had something like what you have had for two reason: 1. The lens was not fitting properly (the red eyes and stinging sounds like they are too tight?) 2. Build up of preservatives. I use a protein remover every week, called Amiclair, that strips the lenses of the build up and they are much better as a result!

  105. Merfat says:

    Hi Jon
    thank you very much for your reply .. so you suggest we try new preservatives or get teh protein remover.. and by preservatives you mean the lenses container ?

    thank you

  106. Jon Severs says:

    Hey, I meant protein sorry not preservative! But yep, I would try and get hold of protein remover tablets, you dissolve them in saline and soak your lenses overnight – clean well next day

  107. Shontiel R. says:

    What is the differance between the hybrid lens and the scleral lens? They look the same to be because you insert them the same way. I’ve been wearing the hybrid synergize lens for 2 years now and they still irritate pretty bad. There is nothing more that the doctor can do to them because we have tried every fit. Will the scleral be any better?

  108. Alan Rogers says:

    Hi,

    I am 62 and have had KC for 50 years! I have tried all sorts of lens, with the exception of the scleral type. Now that I know, I’ll ask my eye Doc.about them tomorrow. I like all the stories I’ve read here. I once had to put special drops in my eyes and lay in a quiet room on my back for a half hour while they worked their magic. When the Doc. came back, he had me sit in front of a large scanner which took special pictures of my corneas. The right one,(my affected eye), looked like an aerial view of Mt. St. Helens after it blew up in 1980. I had a copy and was able to compare, it really did look that way. I last tried a new, to me, technique of a mini-perforated black backed lens that allows gas through, but only allows light in through these teeny-tiny ‘holes’ in the lens.(The ‘holes’ are actually only in the black coating to allow light through but not foreign matter.) I could actually ‘see’ much better than before, but nowhere near the quality of what I see in my left eye. They were also expensive, but, as I told my wife, “What is the price of vision?” “How do you place a cost on ‘some’sight over NO sight?

    Anyway, I’ll talk to Dr. Philips tomorrow and listen to his suggestions.

    Thanks very much for the site, Alan Rogers Portland, Oregon United States.

  109. Jon Severs says:

    Hi Alan

    Great to hear from you. Hopefully your doc will see if Sclerals can help you out!

  110. MJ says:

    Hello all,

    I am 25 and I was diagnosed with KC about 8 years ago. My KC is quite severely advanced in my left eye and moderately advanced in my right. About 18 months ago I got a corneal ulcer in my right eye from my RGPs which wasn’t much fun. I then got cross linking done in the same eye and had to wait ages for my eye to settle down before I could put RGPs back in and return to work. I should add that like many of you my RGPs were horridly uncomfortable…grit in the eye, dry eye, the works. Not to mention the hundreds of pounds wasted whenever one would pop out or fall down a sink or memorably, fall into a dinner plate a formal banquet! The whole process of ulcer to cross linking to trying to get a good fit post cross linking was an enormous pain as I was a pupil barrister at the time trying my best to get taken on ( I.e. I was essentially an apprentice trying to get a permanent place in Chambers ) and I was constantly having eye issues which in turn affected my work. I was receiving my eye care primarily via two private practitioners and neither of them said a word to me about Sclerals, save to warn me off them. I accepted their view and continued to suffer, physically and financially, with RGPs. After getting a bit fed up with the hassle as I was convinced there had to be a better way. I got on to the NHS on the advice of a friend and today spent the day at Moorfields being fitted for Sclerals. I must admit to being a bit daunted by the size and the process of getting them in and out but, with them in, I get 20/20 vision! I will finally be able to drive which is beyond great.

    I’m conscious I may need a few more fittings to get them perfectly comfortable but I am very much looking forward to having them in for hours at a time like some of you.

    Just wanted to say thank you all so much for sharing your tips, tricks and stories of success with Sclerals…KC can be such a pain and as most people haven’t a clue what it’s like, it’s incredibly nice to hear from other people in the same situation.

    Finally if anyone reading this remains unsure, ask your eye doctor about Sclerals and ( if in the UK) use the NHS! When I think about how much time, stress and money I could have saved….

  111. Lucia says:

    Hi have you heard about the scleral lenses inserter which makes it easier to deal with it? I would like to buy it in the US because here in Rio we cannot find it ….if anyone can give me the address of where to buy in Chicago I would really appreciate! Thanks, Lucia (rio de janeiro)

  112. Pete says:

    Lucia: Try the Dry Eye Shop – http://www.dryeyeshop.com/

    I just got my frirst sclerals and proceeded to lose the insertion plunger by the second day (of course). So, I ordered a supply of both plungers (large scleral cup for insertion and small for removal) from there. Once they arrive, I’ll have them at home, work, etc..

    For a more high-tech soution, there’s the Daisyey Adaptives Light Stand. I haven’t used it, but I’ve heard folks talk highly of it. http://dalseyadaptives.com/products-page

  113. Denise says:

    40 years with keratoconus. Had corneal graft and years with hard lenses but now have Sjogrens, which causes dryness of the eye. Going to get fitted for sclerals on Monday. Apparently, you can put your moisturising eye drops in instead of saline. I get those on prescription and I have a prescription prepayment certificate so the cost won’t be as bad. Thanks for the advice.

  114. Stan Ingham (Ophthalmic Tech & Lic'd Contact Lens tech) says:

    I fit the scleral lenses here in the Vancouver, B.C. area of Canada. The scleral lenses are working very well for my patients with Keratoconus or post corneal transplant. Also using for Sjogrens, dry eye, Stevens-Johnson syndrome, post refractive surgery, trauma and so much more. The sclerals do come in smaller sizes too from about 13.0 mm to 24.0mm, it is imperative they are custom fit to your eye size , eyelids, eye shape and and at a power to optimize your success. FYI for some patients soft keratoconus lenses may also work on some patients.
    Got a question please feel free to ask me at stan.ingham@gmail.com I will give you a reply , or get you one.

  115. Denise says:

    Have had a fitting at Moorfields Eye Hospital today. They recommended the smaller sized lenses but the effect was so comfortable for me that I nearly cried ( tough one that ;-) ) . I’ve been advised against soft lenses.

  116. Jon Severs says:

    Good to hear it was a successful fitting!

  117. Naz says:

    Hi im 23 n from the uk … Iv been suffering from KC 2 weeks after passing my driving test so was banned n that was back 2006.

    Iv never been able to read the driving distance requirement since 2006 n my sight has gradually got worse

    A month ago i suffered acute corneal hydrops n went to see an opthomologist n he sed i need a corneal graft in both eyes. I want to avoid this as much as possible but being an accountant i need my vision too

    Reading all your comments makes me stop and consider these lenses however theres not much mention how bad your eyes are before the lenses.

    I cant read a computer screen with my glasses on unless i look closely or squint

    Your responses will b appreciated many many thanks in advance to all the KC family

    Naz!!

  118. Jon Severs says:

    Hey Naz

    Before my hydrops I was about fourth line down on the chart so not great… Much better after but I am lucky. My doctors have always said to leave it at least six months before surgery after a hydrops so make sure you get a few opinions. I noticed improvement in those six months and this continued and still continues now bt I know others did not get any improvement. It’s a waiting game. I can recommend dark sunglasses as they seemed to improve my vision when i had hydrops. Definitely try and seek out scleral options after it settles down.

    Best of luck

  119. Clay in Canada says:

    I am going to my eye doctor tomorrow to get fitted with scleral lenses. I have had KC for over 10 years I guess and it is getting worse in my right eye. I hate the ghosting and weird vision. I feel sick from it and hope the scleral lenses will be good with me..hehehe.

    Nice to find this site and info!

  120. Jon Severs says:

    Best of luck Clay – takes a while to get used to them but I found that if you’re patient (and it took me months to get them perfect) they reward you for the long term

  121. Leah says:

    I’ve had KC for 48 years. I just turned 60. I was in hard lenses, and then RGPs. I’ve still been doing okay with the RGPs, but had cross linking about 6 mos ago, and the doc advised me to have my contact scripts rechecked. She suggested sclerals. I was skeptical, and so far (since I’m hard to fit), we’ve only gotten a good fit and prescription on the left one, but I absolutely LOVE it. No more dust in my eyes, and my vision is great. Fingers crossed on the right lens, which we tackle next week!

  122. fiffy says:

    gawd, this has been eye opening for me. my doctor diagnosed me with KC in both eyes when i was just about 8 years old and was fitted with glasses but my vision was constantly deteriorating. then wen i was around 14 i found myself wearing rigid lenses that were highly irritating, painful and kept popping out that i went back to glasses though they barely made my vision any better. and then when i was 15 yrs i had a transplant in my left eye and had to regularly take medications for four yrs after that with a monthly doctors consultation and all. thank god the transplant was not rejected or anything.the vision was very good initially and then again started decreasing and i was asked to wear glasses. after all the pain and money i spent, it was sickening. and now im 19, almst 20, i had another transplant in my right eye just weeks ago and the vision is better but not perfect though im worrying that it might fall again. even with glasses i cant see much, all that halo is most annoying. i wanna know if sclerals wud help me……. can i wear them after a corneal graft w/o them affecting my graft, if so, how long after the surgery can i start wearing them. im from sri lanka, do u think i cud find sclerals here, and how much would they cost?

  123. keratoconusinfo says:

    Hi there – it would be worth trying to contact the leading eye hospital in Sri Lanka and asking them about Sclerals and if they are not sure about them or do not know them getting them to contact Moorfields in the UK. As for cost, we have the benefit of the NHS over here but hopefully someone can give you a better idea from outside the UK

  124. Juan says:

    Merfat: redness around the lens of the edge and decreased wear time typically indicates a tight fitting lens or a lens that is landing at the limbus (the area where the cornea and sclera meet).
    Shontiel: Although the insertion techniques are similar between the hybrid and scleral lenses the hybrids may not work for more extreme corneal shapes whereas larger scleral lenses can be made to vault extremely steep corneas. Both are very good, but sometimes the hybrid lens is just not an option.
    Dave: Fogging can occur for several reasons: waste build up behind the lens, too much space between the posterior lens surface and the cornea, deposits to name a few. Some patients will experience fogging despite an excellent fit lens. By fenestrating the lens you create a hole where tears more easily exchange underneath the lens. This can help wash debris under the lens out. The drawback is that fenestrated lenses are not as predictable as solid lenses. Air can also be pumped into the fenestration when you blink, this can interfere with vision, comfort, and even the overall fit. Depending on your situation a fully soft lens may be an option. There are several new soft lens designs that are meant to fit irregular corneas. I’m most familiar with the Kerasoft IC, but there are others available.

  125. Patrick says:

    I have advanced keratoconus and almost lost vision in my left eye, this all happened in my early 20′s and it screwed up my life because I was training to be a rescue swimmer at the time, this disease comes out of nowhere and it hits you fast. Luckily I was able to get financial aid and join a study group where they performed cross linking and intact surgery. While I still have some issues with my left eye, it stopped the progression of the disease and it even regressed in my right eye allowing me to where just a simple soft lense for stigmatism. However, I still couldn’t find a lense for my left eye for over a year after my surgery. I was almost ready to throw in the towl and prepare myself for a corneal transplant when the doctor finally sugested the scleral lense. Thank god because this lense was a life saver. Before this lense I couldn’t see at night and being a bartender that was a problem and actually ended up lossing my friday and sat night shifts becuase I couldn’t do my job anymore; hard to have a conversation and poor drinks when you can’t see what bottle your holding or the customers face! As soon as i put this lense in I went from projection screen tv to an hd tv vision. I could see at night, I could drive, I could work again; the lense is huge but very comfortable! Another reason I love this lense is it fits my active life style. I’m an avid surfer who had a couple of very close calls surfing blind in double overhead new england winter conditions. Although it made me a better surfer it wasn’t worth the beatings i took. Now I can wear this lense and it will never come out in the water! Although it takes me longer to get ready in the morning I can live a normal life again!

    I also wanted to point out some differences I do for lense care. I use clearcare solution to clean my lense. Its a peroxide solution that becomes safe to insert your eye after six hours in this special case. However make sure you wait about six hours before you re insert your lense because this solution will burn your eye. The case has a carbon ring that stabalises the solution after 6 hours. I also insert and remove them with a plunger you can get from any eye doctor that fits you with this lense; makes it so easy to use this lense. Lastly I don’t use normal solution to insert them i use hard contact solution. Its thicker so it stays in the lense without spilling and it also makes the lense even more comfortable and less likely for air bubbles. Its more costly than regular solution 10 bucks for a smaller bottle but the bottle last more than twice as long because you used so much less.

  126. Jon Severs says:

    Great to hear your experience – I’ll have to give the thicker hard lens solution a try! It was the fact I could be so more active that really sold the scleral for me too – really changes my life and that’s not an overstatement!

  127. alohaoba says:

    KC for over 25 yrs. I tried everything from glasses +/- RGB’s, piggybacks and eventually needed transplants in both eyes. I also participated in the 10 year CLEK study so had the progression of KC monitored yearly over that period (at four different research institutions). MSD lenses over the transplants have been the best of anything–less glaring, better night vision, comfort, etc. Starting to decrease my wearing time not because of discomfort but increasing astigmatism leading to bad tension around eyes.
    You can buy plungers on eBay (new). I keep plungers (with a case + vial of preservative-free saline) everywhere in case I need to pop a lens out and put it back in or just keep it out until I get home.

  128. Gail says:

    for all you people out there having trouble putting in your lenses you have get the plunger stand i am a new lens wearer and i got the stand to hold the plunger and i am blown away how quick i insert the lense and how little solution i waste. I found his stand on line for 10 dollars and i am telling you it is the best 10 lollars i have ever spend.

  129. Corey L. Mims says:

    Thank you so much for this website. I was diagnosed with advanced keratoconus about ten years ago. No doctor has ever given me this much information. Thanks alot.

  130. Hey! I realize this is somewhat off-topic however I had to ask.
    Does running a well-established website like yours take a massive amount work?
    I am brand new to running a blog however I do write in my
    journal every day. I’d like to start a blog so I will be able to share my experience and feelings online. Please let me know if you have any recommendations or tips for brand new aspiring bloggers. Thankyou!

  131. Andy B says:

    I have advanced keratoconus (9years), and have had a corneal transplant in my right. Post surgery I was fitted with a scleral lense (just for my right eye) and have been wearing it on and off for 2years. The hardest thing for me was mastering the no air bubbles – it took me a good couple months to actually master putting the lens in and being air bubble free. I still on occasion get the odd air bubble which is frustrating but that’s life and the way I see it is I’ve gone through two operations what’s an air bubble compared to increased vision.

    Just stick with it and no doubt it does change your life. Before the lense I was unable to drive at night due to the glare and ‘hola affect’ of street lights and oncoming head lights. Wearing the lense let’s me drive at night knowing that I am confident to be on the roads.

  132. Justyn male says:

    Hi there I have had kerataconus for 6 years now, had a corneal graft In my right eye, since having this I have had many of infections etc had to have my retnia operated on but nothing as worked so my eye surgeon is talking about removing my eye cos I have no vision. I also have the kerataconus in my left eye. I wear glasses but it does not help at all. I have tried soft lenses before but that didn’t help. Just wandered if u could help me

  133. Charles Hagen says:

    My wife has had her Scleral lenses for a little over a month now. KC both eyes the lenses have definitely helped. We do seem to be having trouble only with right eye at night when she goes to remove the lens it sticks most often and is hard to remove. The result is her eye is very red in certain areas. We are on our second fitting should we be concerned. Her doctor does not seem to be we just keep trying lenses. We are concerned that this redness due to the process is hard on her eyes.

  134. Jon Severs says:

    They can be tough to get out and cause a bit of redness – as long is it is only then and not all day it should be ok. You could try squirting a bit of saline in the eye before taking it out to ensure the eye is not to dry.

  135. S.M.Ingham (Stan) Lic'd Contact Lens Fitter & Refracting Optician says:

    Charles Hagen, in all likelihood your wife will need either the lens modified or a lens that is slightly looser, larger or smaller. Her contact lens fitter will be able to assess the appropriate measure to take. These lenses do work very well. I also fit the Soft KeraSoftIC lenses, and the Soflex soft lens for keratoconus and irregular corneas, these do work very well. The trick as a fitter is to find the lens design, size and material that is best for each patient. Even the eyes are fit individually….. With that said she should be fine.

  136. malcolm says:

    i have transp;ants in both eyes piggybacked in each.last year changed to a miniscleral my right piggback lens and it was tremendous much better comfort and excellent vision.I was so impressed that i changed my left too.Initialy the vision and comfort are great but after a couple of hours the lens fogs up really badly and it becomes a little uncomfortable.I have noticed that when i go from outdoors(where it feels good) to indoors the fog starts to develop, does anyone have any ideas what is causes this. days that i need 2 good eyes for example driving i resort to piggybacking the left which actually gives good vision but a lot less comfort.any help from the experts will be much appreciated
    thank you
    Malcolm

  137. Jon Severs says:

    I used to get fogging because the lens did not fit. Also, using a preservative remover worked for when the lens felt grubby and was not foggy but had a lot of haze on the lens.

  138. Kevin Sullivan says:

    No comments on the above, But, I just got a scleral lens for my right eye after having KC 43 years. The right eye had a transplant about 20+ yrs ago and managed well with RGP lenses until recently. The larger scleral lens has been a real positive surprise in terms of comfort and reduced glare when driving at night. So far not too much of an adjustment from the RGP insertion for the other eye.

  139. Stan Ingham says:

    As a very experienced contact lens fitter, (over 30 years ) scleral lenses are my first choice for keratonconus and other therapeutic cases

  140. Vaughan says:

    I’ve just completed the first week with my 2nd set of sclerals (first set were a bad fit but I used them for two weeks).
    Not having used contacts before I’m finding them very irritating but it is getting easier – up to 8 hours today.
    A few questions:
    - Does the cool windblown feeling continue or will that pass?
    - both lenses separate from the eye when I look to the right or left and the lens doesn’t slide under the inner part of the eye – is that typical or a bad fit?
    - when I remove the lenses and put my glasses back on my vision is not as good with the glasses as it usually is with my glasses. In fact, once the lenses have been in for some time, if I take them out my vision is better without the glasses for 3 to 4 hours at which point I need the glasses again. Is that normal or the symtom of a bad fit?

  141. Jeff says:

    Hello,

    I have had scleral lenses for 2 years and I gaurantee you have a bad fit. I had the sam problems with my first 4 or 5 fits. When the fit was finally correct, it was a life changer for me. I never have the windblown feeling and the lens should never “separate” from the eye. I now wear them 14-16 hour days and can wear them more if I want. I hardly notice when they are in. Don’t give up, but you need a doctor who won’t give up either. It is well worth the wait, but I would say you definitely have a bad fit.

  142. Stan says:

    The lenses are not the proper fit. Get back to your contact lens fitter asap. May take very little to correct the problems.
    Stan
    Ophthalmic Tech/Lic’d Contact Lens fitter

  143. Vaughan says:

    Thanks for your advice guys. Difficult to know at first what’s expected and what’s not right. Back to the doc then…
    Thanks again for your advice

  144. Kevin Sullivan says:

    I’ve been wearing contacts for 44 years and just got my first scleral lens. I was lucky
    first lens fits fantastic. I can wear for extend hours 14 or 15 typical. Only drawback
    was relearning how to insert and remove the lens. It’s very different from the typical gas permeable lens. Hang in there it’s worth the effort.

  145. Juan says:

    Vaughan: from what you’ve described it sounds like the lens may be touching the cornea. Over time this can lead to serious problems. You definitely need to have it looked so that the doctor can make sure that you won’t experience any long term problems from the lens, and to improve the fit if possible.

    Good luck with your lens, they are great once the fit is good.

    Juan M, O.D.

  146. Beth Wade says:

    I have severe dry eye and just got to take home my first pair last weekend. It took 4-5 fittings but I’m not sure if they are 100% correct yet or not…do you have any sign of indention around your eye when you remove them? I thought that maybe I was pushing them in too far. But then it seemed to be worse when I took them out and re-inserted. :-/ My dr is off today but I’m going to try and get another evaluation tomorrow. Luckily he has been very patient! Thank you for the removal video – I had been trying to use my lower eyelid but I think it will be much easier to use the top lid, going to try it today :)

  147. Jon Severs says:

    I get indentations sometimes – depends how dry my eyes are and how long i have been wearing. the real sign of not fitting is bubbles/pain/gunge in the eye, but always worth getting a doctor to check!

    And removal/putting in are so difficult, took em ages to perfect, but now it is second nature!

  148. bethwade says:

    I’ve done pretty well today, had them in from 8am-3pm but have been using my saline solution and then preservative free drops, but they are still starting to feel a little sticky now :-/ you said you avoid using drops because they start to feel gunky when you do? I read this on another site: ”
    Reservoir Debris A well-fit scleral lens that is semi-sealed to the eye will slowly pump in tears to replace its liquid reservoir. Unfortunately, tear debris will also enter the lens chamber, which in some patients is subjectively noticeable and can disrupt their quality of vision. The risk for this complication increases with increasing lens diameter because of increased reservoir capacity and slower tear exchange.

    There is significant variation in the amount of debris that builds up underneath the lens among patients depending on lid and tear film differences. Also, some patients are more visually sensitive to the buildup of debris than others are. For symptomatic patients, the only fix is for them to remove their lens so they can rinse and refill it with fresh saline. In a 2007 study, Visser et al found that overall, 48.7 percent of patients wearing scleral lenses (18mm to 25mm) needed one or more of these breaks, and the percentage increased significantly to 66.7 percent for patients who had keratitis sicca. There does not appear to be any fitting change with the lens that can prevent this from occurring. However, having patients fill their lens with a high-viscosity, non-preserved artificial tear rather than with saline may significantly slow down this process. Refitting such patients into a smaller-diameter lens that holds less liquid reservoir and has quicker tear exchange may also be a solution.” http://www.clspectrum.com/articleviewer.aspx?articleid=104342
    Problem is…I have no tears!! and smaller lenses did not work for me bc of the way my eyes are shaped. I’m wondering if I try my preservative drops instead of the saline if it would make a difference…ugh. So much to learn. Thankfully I do have some patience ;)

  149. Kameel says:

    It’s nice to find such a personal site on Kerataconus! Scleral lenses really have changed my life as a Kerataconus sufferer too. I’ve setup a scleral lens FAQ site (http://scleralcontactlenses.info/) where I’m trying to collect as much helpful & practical informaiton on scleral lenses as possible. Would appreciate your inputs (and if possible a link!)

  150. Cesar says:

    Hello, I am from Venezuela and I am 54 years old. I had my cornea transplant when I was 24 and I also have keratoconus in my left eye since the same date. At the end of March I was on vacation in Orlando, Florida when suddenly I developed a hydrops. I went to two doctors at the United States, each one had very different opinions. They were both cornea specialists. The second doctor from Bascom Palmer Eye Institute, told me to use steroids four times a day and Timolol 0.5% two times a day. The last one decreases the amount of water that is inside the cornea controlling the eye pressure. He suggested patience because my improvement will be seen in the next 3 or 6 months. By this time he will define the actual situation of my cornea. A week later when I came back to Venezuela, I visited two other cornea specialists. Both told me that my case was a cornea transplant (second transplant in this eye), none of them told me to wait. I will be back to the United States in the following weeks to see again my doctor at Bascom Palmer because I have come to realize that his opinion was based on exams of all kinds and he seems to have a lot of experience. Also from what I have read in this page I have come to understand this pathology. Lastly I am really thankful for this blog and the amazing information it has provided. I will make sure to keep you updated when I come back from my appointment in the US.

    Thanks,
    Cesar.
    PD: From all my different doctors’ appointments through the years a cornea transplant is set to last for about 30 years.

  151. Kevin Sullivan says:

    Dear Cesar,
    I’m 61 with KC & had a transplant 25 yrs ago… I cannot speak to the specifics of your condition as I am not an MD. However, from having KC, I have learned that everything takes time. If you have not learned patience KC will teach you to have some. I know Bascom Palmer by reputation and they know what they are doing.

    I would monitor closely your condition and put off another transplant till you have no other options. I have never heard a time frame for how long a transplant should last before… I went to a presentation about KC here in New Jersey last year and one of the speakers was talking about some transplants that had lasted over 50 years. So, I think that it all depends upon the circumstances.

    I hate to ask but is the decision to have a second transplant perhaps influenced by the fee? I have been trying to do business in Venezuela with a distributor for the past 20 years and times are tough. I don’t know how that might influence the decision making process of more surgery or not. I know that there are many very talented and qualified ophthalmologists in Latin America.

    Good luck,
    Kevin

  152. Cesar says:

    Dear Kevin,
    Thank you for your words, I will be seeing my doctor at Bascom Palmer next month. I will forward you his recommendations and comments.

    My best regards,
    Cesar.

  153. Cassandra says:

    Hi, I have been a keratoconus sufferer for approx 14 years, I wore glasses for the first few years and then was fitted with the tiny rgp lenses. I loved the new vision but hated the feeling of them, so much so I was unable to wear one in my right eye for four years. During the time of my tiny rgp lense wear I was constantly getting dust in my eye and having to leave work early due to the irritation. luckily for me I went to a keratoconus specialist and was fitted with 16mm scleral lenses about a month ago, I’ve been able to wear them BOTH for two weeks now and are defiantly seeing the world a whole new way! These lenses literally changed my life I am more confident and enjoy playing “can you read that” with my hubby and my children. I am so thankful for these lenses and are ever so greatful for my specialist!!!

  154. Adnan Zafar says:

    Hi.
    Hopes u all are doing great.
    I am Adnan from.Pakistan. i have KC since 2005.
    At first i used tiny regular rgp lenses for almost 5 years.
    Then they just got uncomfortable then my practitioner gave the the litle bulging ” Rose k” lenses .
    Last year there is a developmnt of additional tip in my left cornea and that lense became uncmfrtable thn i used “piggy packing” for a month but did’t worked for me.
    Where as the right eye i am using Rose k type lense but that’s also not a best fit . I have even lost one lense due to fitting issue it fell itself and
    Just vanished.
    Now my practitioner asked me for the Scleral lenses… but unfortunatly he does not practise them…
    Please any one guide me where could i easly get them with the best practitioners.
    And what its cost.
    I have an info about K N PULLUM in London how is realy expert for these lenses.
    Any idea please help me.

  155. Denise Danks says:

    I get mine from Moorfields Eye Hospital in Lomdon. It’s an NHS hospital which does do private work. http://www.moorfields-private.co.uk/about. It also has a hospital in Dubai, which might be more convenient for you. http://www.moorfields.nhs.uk/Aboutus/MoorfieldsDubai

  156. Adnan Zafar says:

    Thanks Denise Danks,

    but could u please inform me that their branch in dubai are also providing the Sclarel lenses expertise as in London ?

  157. Have you tried the smaller sclarel lenses? If so, is that why you went to larger ones, were they better?
    Im currently wearing the jupiter mini sclarel lenses and they are great. Ive been in theses lenses now for about a month. Ive been wearing contacts for years, so im use to having my fingers in and out of my eyes. The transition into these lenses have been fairly seemless.
    Their is still blur getting through the lenses.
    So im wondering if the vision would be clearer if i had larger sclarels.
    The dr that fit my lenses was fairly new with dealing with special fitted lenses. It took 16 visits total to get me where im currently at.
    Through all the visits we tried kera soft leses, wave lenses, synergise and then the sclarel, which were superior over all.
    My dr’s fees were extremely reasonable considering how many visits i had with him. It was only $1000 for the fittings and $500 for the mini sclarels. We must went through 12-14 pairs of contacts. And he told me he wasnt getting fully reimbursed for all of them.
    My vision is currently 20/20 according to the eye chart. But I dont know if I’m just being picky,”(because i dont know anyone with keractaconus personally)”. The vision is still pretty blurry, like a blurry 20/20, its frustrating to be so close.
    So bottom line I’m just curious to know if you had a similar experience and got better or more crisp vision with the larger ones.
    Im pretty happy with the vision i have just felt like the dr was at the end of his rope with me and frankly i was tired of all the 300 mile round trips.

  158. gauri gupta says:

    Why are my eyes turning red AFTER I take out my scleral lenses. Eyes are fine when I have them on. Its only after wearing them for a couple of hours, 6-7 hours, they turn very red.

  159. Jon Severs says:

    They might be too tight… But you will get a little redness after even with a good fit

  160. Jon Severs says:

    I tried a smaller scleral for a short period but it did not really work for me – apparently my corneas were to steep! I get the best result with these bigger ones but I think it depends on each individual case… Would be worth trying the big ones though to see I think…

  161. Rats says:

    Hi everyone, I am from India and got to know about my condition (suffering from KC) about 2 yrs ago. In Aug’12 I had my C3R done in my both eyes, though my left eye was the severe one and right eye with mild KC. Post C3R my KC in both the eyes is stable but I am observing some deterioration in my right eye vision, checked with my doc and she told that my topography shows that my KC is stable, but I am very concerned with the increased halos in my better eye (i.e right eye).

    Currently I wear rgp in my left eye which are very irritating and most of the time leave me exasperated. Also tried Kerasoft lens but the lens were not of much help. Will try for scleral in some time.

    Halos have created my life in to a real challenge. But I hope to see clear 1 day.

  162. hi i just came across this post i just got fitted with scleral lenses and there are great still adjusting fit with doc due to redness and irritation its been two weeks and all of a sudden they started fogging up the last couple of days i take them out and rinse and replace and im fine for about a half an hour to an hour then they fog up again i hope some one can give me a tip or some advice to fix this i really like the contacts. please help…….

  163. Jon Severs says:

    Get a preservative remover – they are tablets that dissolve in saline in which you stick the lenses. If that fails it’s probably the fit. I use Amiclair

  164. Juan says:

    Before you use a cleaner on the lenses call your doctor and ask what they recommend you use first. Different materials and coatings can be damaged by some cleaners. Just because it works with one lens doesn’t mean it won’t cause problems with another.

  165. malcolm says:

    i am after transplants in both eyes and wore piggy backs in my eyes. last year my right eye was showing staining on the cornea so my eye doctor got me into a miniscleral which does cause a red eye but is very comfortable and i can wear it for about 12 hours a day.i was so happy with it i asked to be fitted as well in the left.after a bit of tweeking the lens and several changes mainly due to misting the lens was good.Suddenly it too after a couple of hours fogged up.. the doctor is not sure why and i have tried all the different solutions and the protein tablets but to no avail.
    Now the right has started to fog up and wearing both sclerals in each eye is dangerous especially whilst driving.
    I now wear my old piggy back system in the left and the miniscleral in the right and when it fogs up it is less of a problem.
    Malcolm.

  166. Juan says:

    Malcolm,
    The fogging can be caused by several things. The minisckeral would not be my choice for most post-transplant patients as usually a larger lens is needed to get a proper fit. If you and your doctor feel that the scleral is no longer a good idea you can always consider a hybrid lens like the Ultra Health (from Synergeyes) or a soft lens for irregular corneas like the Kerasoft IC. The soft lens does not usually have as good of vision as a hard lens, but I’ve had some success with them for former piggyback lens wearers.

  167. thank you for all for your advice. this is a great site it helps to know im not the only on with this problem. thanks

  168. Damo says:

    Hi I am 16 years old and have had keratoconus since I was 11 and have had deteriorating vision since.I have tried all sorts of lenses and have had sclerals for 2 years. I have been greatly helped by Ken Pullum at Moorfields.My problem is that I am trying to do an IT course and am struggling with the heat/air conditioning and yesterday when I went to try another college to see if the environment was better I had to leave early since both eyes were sore but the Left was teary and since then my eye has been pink. I have only just started the course and am considering leaving since I cannot cope with the pain and discomfort whilst trying to concentrate and then finding I cannot socialise later because I can barely keep my eyes open. Any help greatly apppreciated

  169. Jon Severs says:

    Have you tried wetting the eyes with saline every so often? Or one of the ‘fresh eyes’ drops you can get?

  170. Denise says:

    Don’t leave the course. Go to a&E at Moorfields straight away or any hospital with an eye dept.

  171. Damo says:

    Thanks for that will go to chemist today to get saline drops to see if that helps

  172. Adnan Zafar says:

    I m 26 nd have keratoconus since 2004.
    Tried almost all kinds of lenses.
    Now i m finally going for seclarlz soon.

    Any thing i want to knw that could help me in supporting the doctor for best fitting?

  173. Robert says:

    I have had KC for the past few years. I was prescribed GP lenses, but they irritated my eyes too much so I went back to soft lenses. Just recently I went to a specialist and tried the “piggy back” method but found that the results gave me double vision. I was able to see better on the eye charts, but I still had the problem of double vision. And when I say I could “see better” I was taking the doctor’s word for it because I didn’t realize a noticeable difference when I had the piggy back lenses on. The lens fitter tried to correct for the double vision, but to no avail. Has anyone here had problems similar to mine who has found success with scleral lenses? I was thinking of asking a doctor about the INTACS procedure, but I’d first like to exhaust all of the non-surgical options before proceeding with the surgical options (e.g. INTACS, corneal transplant, etc). I am a tax accountant so my vision is especially important for my job. I realize that I may not be in the most suitable profession given my eye condition, but then again what jobs that can support a family don’t require good eyesight? Any thoughts or success stories are much appreciated. I just want to find a solution that works for me.

  174. Juan says:

    I’ve refit many piggyback lens patients into scleral or hybrid lenses (such as Ultra Health) and all of them strongly preferred the scleral lenses. I would strongly recommend you try scleral or hybrid lenses.

  175. I’ve been using scleral lense for four years, but in my right eye only. In my left eye, it’s just RGP lense. Though I don’t need it in my left eye, I’ve wanted to get it because they don’t fall out, and dust doesn’t get behind the lense. However, they’ve just so expensive that I’ve held off over the years.

    One thing I’m curious about. I developed hydrops, and haven’t been wearing my lense because it doesn’t have much effect on my vision right now. Has anyone heard, though, that it’s okay to wear the lense with hydrops?

  176. Jon Severs says:

    I left my lens out for around 6-10 months after the hydrops. That said – in the first few days they have me a large scleral to wear to protect the cornea as my eye lids were irritating where it had split

  177. tasdj@hotmail.com says:

    I got My Mini-Scleral lenses just over a year ago, and I cant’t recomend them enough. I am not saying they are perfect, but they are so much better than anything else I tried. I spent months trying to get normal RGP lenses that fit properly then messing around with the persciptions. Lost at least one, broke another one. I got better vision than with my glasses but it was still pretty poor.

    I asked my optometrist about some other KC lenses I read about on the internet, she suggested sclerals instead. I went in to see the optometrist at the practise who had experience with the Mini-scleral lenses, had a topography done, went back to trial the fitting lens almost 20/20 with no perscription.

    I think the value is not that bad either; yes they are expensive but:
    they don’t fall out
    They give better vision
    They don’t move around on the cornia like smaller RGP can
    small changes in the shape of the cornea don’t mean you have to get a ney fit/prescription
    I have had mine for over a year and assuming I don’t lose or break one will get two years out of one set.

    I reccomend anyone with KC to ask about them if you are not happy with the current treatment, and it’s worth finding an optometrist who has experience with them,

    also, I have little suction things to put them in and take them out.. Get those much easier than trying to use your fingers!!

  178. Suzie says:

    Just got my first sclera lens for my KC today, when I took it out I can see a ring on the white out my eye where the outer edge had been and my eye is sore, is this normal? Did I wear it too long or did it dry out? Any feedback would be welcome!!

  179. Suzie says:

    The white of my eye, sorry for the typo!

  180. bethwade says:

    Suzie, check with your dr but mine said a mild compression ring is normal. It took my eyes a while to get used to the lenses (I wore soft contacts for years before my eyes got dry). Also it may help if you change the fluid midday. I put mine in about 8am, remove/put new fluid in 12-1pm, then remove about 6pm. HTH!

  181. Suzie says:

    Thanks!

  182. tanya maile says:

    Thank you so much for posting this. I was referred to get these last week and its my last step before a cornea transplant.

  183. sentinel says:

    Hello…you are just awesome. you made me to know about my disease. .I do suffer from keratoconus..and undergone for c3r….but now am in dilema to opt the lenses…rgp or scleared lenses??

  184. Marisa says:

    Hi. It’s so encouraging to read your prospective experiences. I am now 27 and a keratoconus patient for the past 10 years. I have had two corneal transplants and was wearing glasses until I became legally blind. My doctor here in DC recommended scleral lenses. It is the besttt thing that ever happened to me. The process is long and you have to be veryyy patient but it will be worth it in the end. It took one month to get the right eye done and three months to get my left done because the Keratoconus is more progressive in that eye. My doctor was very patient and even though it was long, stressed out and expensiveee procedure, I couldn’t be more excited and blessed.

  185. Sajad says:

    Hi,
    I am so glad to find this really useful page ad read KC patients comments. I suffer from KC in my left eye. I had a Cross linking operation on my both eyes about one month ago. My right eye is rather ok but my doctor said the operation would prevent the right eye to become like the left eye.
    I am considering using scleral lenses thanks to your positive comments.
    Sorry for the poor English.

  186. Maurice says:

    I see that the Scleral lens can be used with patients with hydrops. My question is has anyone with hydrops used this? How well was it useing the lens?

  187. Hello Maurice,

    I’m not sure how well useful scleral lens will be with hydrops. I’m on my third month with hydrops, and my scleral lens doesn’t allow me to see the way it’s supposed to. My vision in my right eye is only slightly better with it in then with it out.

    My doctor advised me not to wear it, but every so often I’ll try it on to see if there’s been any improvement. There hasn’t been.

    I hate to say I’ve gotten used to seeing mostly out of one eye, but I suppose I have. I still find this whole process frustrating, and I can’t go back to my life as normal. But I don’t notice my limited vision as much anymore, and if this is cleared up in the next six months, I’d be happy.

    As long as hydrops isn’t some recurring affliction, and every other year I’m not partially blind, then I’ll just chalk this up to a living experience once it’s healed.

  188. Kevia says:

    I do not have KC but I wear scleral lenses. I have congenital nystagmus, photophobia, and severe astigmatism. This is a result of being born with albinism(albino). I was told all my life I would never be able to drive or wear contacts. I found a doctor in Atlanta Georgia who said that they might be able to get my vision high enough to get a license by using contact lenses.

    It took me a year to get used to the process and now I can put them in and out in under a couple minutes. I love how much better my vision got than glasses ever did. But with no melanin to filter the light that comes in i stay in sunglasses.

    Because I’ve gotten so good at them I’m wearing them everyday now instead of only sometimes and recently I’ve started to get mucus on both my eyes in the morning. And pain in the corner near the crease of my right eye and a red ring around the Iris of my right eye. Don’t know what’s going on.

    I use unisol 4 as a saline, Boston fit everyday cleaning, and clear care for the protein cleaning.

  189. K. says:

    Just wanted to say that for those that have tried scleral lenses without success, there is a a new treatment known as PROSE that might be helpful.

    See: http://bostonsight.org/PROSE-treatment/About-PROSE

  190. Adnan Zafar says:

    Hi All.
    May u all having a great life with ur lenses
    I am 26. Having kc for 9 years.
    Recently 3 months back.i moved to the seclaral lenses.
    .
    Thanks all for your coments and experience u shared.
    I am having a problem with my sclaral lens. It seems like i am addicted to it .
    Bcz my cornea irritates me when i remove the lens. A continuous pain remains in my eye .. but when i have my lens on it just vanished like no.pain..

    Could any one plz help me out.

  191. Stan Ingham says:

    As a scleral fitter (contact lens specialist), you need to see your contact lens fitter to determine if it is the lens fit and/or your technique in removing the lens. Are you using Unisol to apply the lens, your saline may be wrong for you.

  192. Stan Ingham says:

    Prose lenses are the same Gas Permeable scleral lenses, they are made from Bausch & Lomb Boston gas permeable lens materials hence the name Boston Prose

  193. Stan Ingham says:

    Kevin your contacts may need professional cleaning, when your comfort level diminishes please do not hesitate to see your contact lens fitter immediately.
    A change in vision, or comfort while wearing or after removing, get it checked out.

  194. Stan Ingham says:

    For the record there is a number of soft contacts made specifically for keratoconus sufferers who can not tolerate standard size gas permeable lenses, or scleral gas permeables. I have successfully fitted a number of individuals with the soft keratoconus lenses who have achieved 20/20 (6/6) vision and good comfort. I fit the KeraSoft IC, Soflex SoftK, and others with good results. I fit whatever will give the patient the results they need, want and deserve.
    Talk to your fitter.

  195. ADNAN says:

    Thanks Stan Ingham for your kind response sir.
    i am not using unisol. i will search if they are available in Pakistan.
    but if saline is not ok for my eyes than it must disturb me while it is on.

    The removing technique might gave some issues i will b care full with that next time.

  196. Robin Caverhill says:

    I was diagnosed with keratoconus about twenty years ago. I wore soft contacts for a few years more after the diagnosis, then changed to RPGs. As everyone says, RPGs were good vision correctors but a total pain to wear – literally. The lenses themselves hurt my eyes, they shifted around a lot and fell out frequently, and if you’ve worn the things you know what it’s like when you get grit underneath one, it’s excruciating. Finally this year I told my optometrist to find me another (non-surgical) answer, and after some research he decided on scleral lenses.
    Because I’ve worn RPGs for so long, my prescription actually changed a fair amount during the fitting process; the corneas rebound after years of compression by RPGs, like the earth rebounds after glaciers recede. This meant that first my doctor got the correct fit, and then the correct prescription, after the corneas had stabilized. He had to tweak the scrip a few times because the eyes continued to change – one actually improved slightly. I will get my very first correct lenses today, after two months of fittings and trials – very excited! The vision correction is very good and the comfort is fantastic – my eyes feel better with the scleral lenses in, then they do with the lenses out.
    A couple of things I’ve noticed that might help others:
    Compression rings are normal. Mine last over an hour after I remove my lenses, but are gone by morning.
    I know a lot of people swear by inserting and removing sclerals using a plunger, but personally I prefer the three-finger/tripod method – I find it provides more control. If the curve of your lens is very steep, using your fingers might actually be easier.
    I tried using the ClearCare method to ‘make’ my own solution to fill the lens vault (barrel case with catalyst in it, turns H2O2 into sterile water after 6 hours) but the tiny residual amount of hydrogen peroxide in the vault still irritated my eyes. Unisol 4 is not readily available in Canada; I would have to order it through my optometrist and he says the price is prohibitive. I can order it on Amazon but they charge a fortune to ship to Canada. Finally I coerced a friend into buying it for me when he went to the States. I strongly recommend this product – no stinging, it’s not slippery like artificial tears, and it provides very clear vision. I use Boston solution for storage and Unisol 4 to fill the reservoir.
    My lenses have no fenestrations, and if I wear them more than 8 hours, I’m finding they cloud up; once I change the fluid in the reservoir, they clear right up.
    I absolutely love scleral lenses and can tell they’re going to change my life – I can bike again, work outside when it’s windy, use my peripheral vision, and see better than I have in years.

  197. Robin Caverhill says:

    If it’s okay, I’d like to add my optometrist’s name – I know how hard it is to find a doctor who can properly deal with keratoconus. I go to Dr. Viktor Kuraitis, OD, in St. Catharines Ontario.

  198. Scaler so lenses have also changed my life, but insurance won’t cover them. At $750 a lense, it is now prohibitive. Any suggestions? I live near Boston and go to the Boston Foyndation for Sight. Thanks.

  199. Juan says:

    Dr. Lynette Johns is excellent (http://www.newenglandeye.org/), and you could also try New England College of Optometry (neco.edu).

    Sincerely,
    Juan Menjivar, OD

  200. Philip Chmalts says:

    So I just got a scleral lens on Saturday and I cannot believe the vision it gives me. I have severe KC in my right eye and got cross-linking in Montreal last june to see if I could stop the progression and help the vision. I am still trying to get used to putting them in but I honestly found my old Synergize lens to be harder to put in and much more irritable. I just want my brain to get used to seeing again because I have only been relying on my left eye for the 15 years. They are surprisingly comfortable and i basically have to get into this zen yoga like state of mind when I put them in and just be very calm. So far this has been the only thing that as helped. Went from not seeing fingers to 20/25 with this. I hope it works out!

  201. Kameel Vohra says:

    HI Kevia,

    I wear scleral lenses get goo in my eyes everyday too.My doctor had suggested that it might be a mild allergic reaction to the lenses, and prescribed me Restasis eye drops. Since using them I’ve found the redness has markedly decreased and the volume of goo has also decreased, but it hasn’t disappeared.

    You might want to check if you have any other ENT related infections as they can also stimulate your eyes to produce goo.

    Hope this helps,
    Kameel

  202. I wear a scleral lens in my right eye, and got the goo in my eye for about two years before I finally developed hydrops. I don’t know if the two are related, but my doctor also said the stuff in my eye was an allergic reaction. He didn’t blame the lens, however.

    As a result of the allergic reaction, I ended up rubbing my eye more, which is really bad for the advanced condition of my keratoconus. Once again, I don’t know if this led to the hydrops, but I figure it probably didn’t help.

    For me, however, I have no other lens I can wear. I’ve exhausted all other options, so even when my hydrops finally heals, I’ll be back to the scleral lens.

  203. Sara says:

    Hi Todd, sorry to hear about your hydrops. I’ve luckily not had a case…but what I can offer is antihistamine eyedrops. I am lucky that I can still wear (tolerate) corneal lenses, albeit one of them is very big to accommodate the steepness of my cornea and I wear it piggy-backed as the climate where I live is not eye friendly! I have invested in a pair of scerals to use as backup in case all goes pear-shaped as it did about 2 years ago when I could not wear lenses for what seemed an eternity!
    But about the drops….I use these on a regular basis. And if I start to get any goop. I also make sure that I change lens cases and open new bottles of preservative free lens solutions…and I probably get a bit OCD with washing my hands! The antihistamine solution I use is called Zaditen eye drops which contain the active ingredient ketotifen. These are available without prescription in many countries. I know they are available in the UK and Australia. Good luck :-)

  204. raman says:

    it is a very bad one affecting the eye. is it heriditory ?

  205. Linda says:

    Hi,

    Does anyone know a fitter of sclerals in Hawaii? Also, is there a brand of scleral which is working better than others? If anyone needs a great eye doctor who deals with keratoconus/pmd in Tampa, FL, Dr. Bruce Anderson is great.

  206. Mattie says:

    My sclerals make my eyes red after a couple hours of wearing them and I have also had problems removing the one in my left eye. I can’t break the suction. Do you all feel both of these issues could be resolved with a refitting?

    I went to the doctor today and he gave me the option of the scleral again or trying the synrgeyes or whatever with the soft skirt. Any thoughts or suggestions I would greatly appreciate.

  207. Stan Ingham says:

    Hi Mattie
    You need to have the fit of your lenses assessed. A minor change in the fit may eliminate your problem with redness. A change in your saline may help. As for the removal it may be a bit tight, or your removal technique may be not the best for you. There are some good YouTubes on the correct way to handle them.
    As a contact lens specialist I would hope you would give them another try. I have also found some of the soft lenses for keratoconus work really well.
    See your fitter and good luck
    Stan Ingham

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