Long term scleral use

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mz1984
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Long term scleral use

Postby mz1984 » Fri 02 Mar 2018 3:51 pm

I've had my scleral lenses for a few days and feel quite pessimistic and depressed. Although the vision they give is great I just can't see myself doing this long-term. Every time I botch an insertion (most attempts) I feel like I'm causing another abrasion to my eye and it just feels like doing this 365 days a year things are bound to go painfully wrong at some point. It seems like they are a solution of last resort and it feels so unnatural to put them on and take them out. I feel like Mr Burns using some contraption from the 1700s. I'm 34 and the idea of doing this for the rest of my life seems like a non-starter to me.

I just imagine myself needing to take them out at work or in restaurant, going into the toilet with my mini pharmacy of accessories and solutions whilst people stare at me fiddling with a plunger in my eye, then it pops out landing on the floor under some hard to reach crevice. I know this sounds silly, and its said half in jest, but if these lenses are a part of your daily life these kinds of scenarios are bound to happen...

At the moment, I feel like I need to take them out after about an hour, just cant imagine how it must feel after 10 or 12 hours.
Is there anyone on here thats been using them long-term, what issues have you faced? I know for many people they are highly motivated to persevere with them and for some others even they are just the only way to function in daily life and so sorry if this sounds like a childish moan.

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gsward
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Re: Long term scleral use

Postby gsward » Fri 02 Mar 2018 6:29 pm

Hi, first you do need to be realistic about building up wearing time. If you are consistently getting an uncomfortable feeling after you have been wearing them for a while I would recommend seeing your practitioner again when you have had them in for a similar amount of wearing time.

I think most of us struggle with inserting them even now from time to time. My own tips are: don't "try too hard", try to ensure your eye is as near as possible horizontal when you insert - get a friend to check you from the side. Personally, I find if you look inwards slightly just as you put the lens in it usually eliminates any air bubble, but that may be just me. When I was first fitted I saw a "clinical coach/nurse" at Moorfields who was really helpful. In time you will probably get to be able to remove them too without the plunger, again at your clinic for some advice. This can be really useful if you are stuck in a meeting or at dinner and need to excuse yourself!

You are in early days, so do be patient with yourself.

Graham

mz1984
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Re: Long term scleral use

Postby mz1984 » Sat 03 Mar 2018 6:25 pm

Thanks Graham, appreciate your advice. I'm definitely being impatient, I guess partly because the reality of living with KC has only just now hit me.

I've also noticed that when removing the lenses after 2-3 hours, I have a faint ring on my eye where the lens was resting. The eye is usually then tender for 10 mins then the ring disappears. Is this normal? I've read differing opinions online, it might be known as conjunctivital blanching but this seems to be accompanied with severe redness in the eyes which i don't have yet, just the circular indentation. The optom did say something about it taking 5-6 weeks for the eye to adjust to the lens, don't know if that's related but sounds a bit weird to me that the eye itself would adjust to the lens.

Is there anyone on this site who has been using scleral lenses for a few years? I'd really appreciate to hear from you. Is it something you've managed to integrate into your life and how long have you used them on daily basis?

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gsward
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Re: Long term scleral use

Postby gsward » Sun 04 Mar 2018 9:45 am

How about 20+ years, but I am sure I am not the longest! The blanched ring is not an uncommon problem, I would encourage you to get it checked at your clinic. Often issues don't show up until after a few hours of wearing and can usually be sorted with an adjustment to the fit.

mz1984
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Re: Long term scleral use

Postby mz1984 » Tue 06 Mar 2018 3:27 pm

20 years thats a long time but i guess overall your experience was positive. Unfortunately, a new fit would cost me another 2000 pounds so its not really an option for me. I dont think its blanching as there isnt any redness or red veins appearing just an outline of the lens almost as if the lens came out but the saline solution was held in place.

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John Smith
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Re: Long term scleral use

Postby John Smith » Mon 12 Mar 2018 11:17 pm

I've been wearing sclerals on-and-off for about 15 years now. Currently I wear one in my right eye for about 14 hours a day, but the left one only for about 8 hours. That is gradually improving though. I've had the left lens for about 2 months.I insert the right lens correctly first time almost all the time, and can almost always remove it without the plunger. The left lens though is more awkward, it seems harder to insert, is botched more often and I need the plunger most of the time to remove it.

I'd suggest being patient, and being kind to the eye. If I don't get the lens in after 3 attempts, I give up for an hour or so.

I've not come across the ring you speak of,but I'd certainly mention it to your fitter. If it's a bad fit, you need to change it, and for a new lens should be under some form of guarantee, even if you didn't get the lens on the NHS - where the guarantee is for 12 months.

Best of luck getting everything sorted out.
John

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Re: Long term scleral use

Postby cloud » Tue 27 Mar 2018 5:17 pm

I had the exact same feelings when I started to wear my sclerals +10 years ago. I was bitterly disappointed with them over the initial weeks/months as I adjusted to life with sclerals. After a while I managed to get 16 hours days, 7 days a week wear which was as much as I could ask for. Putting them in, taking them out became second nature and I grew to prefer them to any previous lens I had. I could easily pop them out in front of a crowd of people as long as my hands were cleaned and dried. Storing them dry meant I did not need to worry about solutions until I next planned on wearing them.

Recently I've had to move from a large scleral to a mini scleral and I miss the days off the comfort of a well fitted scleral lens.

As John says, I would mention to your fitter than you have concerns and see if they can be addressed. Beyond that a bit of perseverance should see you through this initial rough patch.

mz1984
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Re: Long term scleral use

Postby mz1984 » Thu 29 Mar 2018 10:19 am

Thanks cloud and john smith for sharing your experiences. Things have improved, I've gotten better at insertion. I still have not used them at work and will only wear them for a few hours at a time when I am at home or somewhere nearby so I can remove them if needed. Hopefully, I will be able to wear them 16 hours for 7 days a week at some point. I have an appointment coming up so will look into the fit, and whether they are covered by a guarantee. I will just add that they are comfortable and mostly you hardly feel them on your eye. Annoyingly, although they have given me 20/20 daytime vision, my eyesight at night is better without the lenses, as they cause a massive circular glare around every light. I do have the typical nighttime glare (Without lenses) but this improved quite a lot after my CXL.

mz1984
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Keratoconus: Yes, I have KC
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Re: Long term scleral use

Postby mz1984 » Wed 11 Apr 2018 3:07 pm

i had my follow up today and thankfully the lenses are covered by warranty so i'm getting a new pair with a different fit. This should hopefully reduce the indentation marks left by my current lenses. I was told that the indentation on the sclera wasn't something to worry about so long as there was sufficient movement of tears between the inside and outside of the lens, which there is - in case that is useful to anyone experiencing the same issue. Also glad to say i'm able to insert the lenses in both eyes now with usually just one attempt.

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John Smith
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Re: Long term scleral use

Postby John Smith » Wed 11 Apr 2018 5:11 pm

Really glad that you've progressed. Do keep us informed on how you get on with the replacement lenses when they arrive.
John


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