Training with Boston Scleral Lens difficulties

[Tdwax]

I am currently being trained to put in and take off the Boston Scleral Lens. Due to Stevens Johnson Syndrome, I have had about nine graph surgeries to my eye lids. My eye lids are very irregular and it makes it difficult to open the eyelids wide enough to put the lens in. They tell me this in normal and some patients have had up to five training session-2 hours to be able to insert lens. Would love to hear others experience and tips. It was somewhat disconcerting and torturous poking and prodding myself to no avail. I return next week and am ready to give it a go. It seems the trick is to relax your eyelids and position your fingers optimally to pry them open. Please advise...

[Tdwax]

Anyone out there have difficulties at first getting Scleral lens in? Would love to hear your experience and any tips. I am having difficulty getting my eyelids open wide enough. Go back tomorrow for another training.
Thanks

[odydnas]

Hi! I do not have SJS. BFS diagnosed me with corneal neuropathy, and I had extra large lenses. Because my eyes were super super sensitive, touching them were very painful, and any manipulation was tough, and so opening my lids big enough for my already larger than average lens (at least for one eye) were even tougher.

1. What helped for me was to have my trainign first thing in the morning, as my eyes tend to get worsse as the day goes on, which all the poking and prodding.

2. Keep each training session short. They lasted 5-10 minutes at a time for me because of my diagnosis. That way, I could take a break and rest up from the pain that built up. That was definitely key for me. If you cannot get it in the first few times, you just have to take a break.

3. Elbows up!!! Do the lidspread, keep your elbow up, tuck you chin in, stare into the green light, and move nothing else but your hand that is inserting the lens. I noticed that whenever I dropped my elbow or moved my chin, my lidspread would get smaller. I made the mistake of moving both my body and my lens to each other, and that would mess up the lidspread. If your lens is bigger than average, you will may feel a "suction", that is when you know to release your lidspread to capture the lens.

4. It may be worth asking your doc for advice. For example, my eyelids are so sensitive, that having the edge of the lens accidentally brushing by the them would pretty much end my day. So I asked my doc how she was able to get my larger lens in so much more comfortable than I could and she was able to give me some advice and it turns out that she put my lens in a little differently than she would other patients. Instead of putting the lens straight in, she puts it in an angle on the bottom, and then pushes it up top. And that really helped learn to put the larger lens in my eye.

5. Be patient. Everyone is different.

Good luck and I hope that helped!

[Rebecca Petris]

Anyone out there have difficulties at first getting Scleral lens in? Would love to hear your experience and any tips. I am having difficulty getting my eyelids open wide enough. Go back tomorrow for another training.
Thanks

Tdwax,

I didn't have any trouble when I was at the clinic (though I know a lot of people do... one good friend of mine took 2 weeks to be able to insert & remove on her own). But after I went home I remember going through a period when I could never seem to open my lids wide enough. I'd have to keep drying off my eyes/lids to be able to get a grip.

One though: I don't know at all if this is a possibility but awhile back I ran across a consumer device to hold the lids open. I don't know if this is compatible with sclerals but it might just be worth posing the question? Here's a link.

[Tdwax]

Thanks for the tips!!! I am going later today for my second training. Elbows up and chin in, I am going to work on that. That eyelid opener looks interesting too. I am going to talk to them about that today.
Thanks again
T

[RobinH]

Hi,
I hear your frustration, as this was tough for me too in the beginning. I ended up having to modify the procedure they taught me at BFS in order to get it right for my eyes.
#1. Make sure both your fingers and the entire area surrounding your eye are very dry before trying to insert your lens.
#2. This was the biggie for me: I could not use the fingers they suggested for the lid spread. They wanted me to flip my hand around and use the side of my thumb and my index finger to open the lid. Did not work for me. I ended up using my middle finger to pull the bottom lid down and my index finger to pull the top lid up. When I do it, I make sure that both fingers are on the very edge of the lid, almost on top of the eyelashes and very close to the actual eyeball. That way, my fingers don't slip farther away from the lids and prevent the lids from staying spread far apart.
#3. Experiment! Don't be afraid to try different ways. Everyone's eyes are different.
Hope this helps.

Robin

[Bonnie]

I use my right hand to balance the lens on three fingers pointing up to the cieling...my thumb, pointer and middle finger...and my right hand is also braced against an immovable surface (table...counter) so my hand won't tip or move...then I look down at it and use my other hand (pointer on top lid and thumb on bottom lid to spread them and lower my face to meet the lens instead of raising the lens to my eye...it makes for a steadier process.....and has worked for me...I also fill my fenistrated lens with fluid, so my system prevents me from spilling...

[Tdwax]

Thanks for the tips. I might try to use the middle and index finger approach. I trained for almost two hours and could not get them in today. We were trying to put the lens in the bottom lid first and then push down and put the upper lid over it. My multiple graph surgeries severely comprise my ability to open the eyelids. I was getting a little disheartened, but I'm going to keep trying. I feel I am getting my eyelids open wider. Luckly I live and work very close to the LA satellite site at the USC Doheny Eye Center. I was able to take them out, though slightly scratched my eye taking the right lens out, I pulled down instead of up and away. It seems I am not the only person to struggle in this process. It took so long to get approved for my Anthem HMO insurance and now my lens are there and this expecation of hope, though I had no idea how challenging this would be. Your stories have given me hope and I will continue to try to get them in. Until friday....

[Tdwax]

I got my left lens in twice today! Once with a bubble. The right lens is harder to get in and they are trying to show me how to angle it in bottom first and then push in the top. Have any of you guys had trouble learning to do that? It's hard with someone directing you let alone by yourself. I feel some relief I got my left lens in, I was getting really discouraged for a moment. I going back friday to train more. I am lucky to live near the satelite LA site at USC Doheny Eye Center. Thanks for your stories and advice, they have been very helpful.

[odydnas]

Congratulations!!! Once you get it in with a bubble, its smooth sailing from there! A bubble simply means you got in, but you just didn't push the lens onto the eye hard enough before you released the plunger. For my left lens, i have to do exactly that, except I wasn't shown how to do it...my doctor simply told me to try it that way and I just fiddled around. I think all the coaching in the world isn't the same as fiddling around yourself and finally getting it and knowing what it should feel like to put it your eye that way. Once you get it in the first time, you will get a suddden "OH!!! That's how it's done" and it will get easier from there.

One question: At the USC clinic, are they able to modify an existing lens? I know they cannot make a new lens, but what about simply loosening or tightening the edge of one?

Anyway, good luck!!!

[RobLIC]

The process got a little easier for me when I started to make sure the lens was really sucked tightly onto the plunger before insertion.

You can sort of control how tight it is by how much you squeeze the plunger when you rest the lens on it, before filling. When I started, I used to think it was smarter to have the lens kind of loose with the suction, thinking it would go into my eye easier on "release."

What I've come to realize is that if I make it as "tight" as can be, I get a nice "snap" during the release, which is more of a cue for me that it's safe to pull my arm down.

[Tdwax]

I am not sure where they make the lenses, but two days after my intial fittings the lenses were ready. So I am imagining the site is pretty close. I am going tomorrow for another training. I will ask them. I hope to get the right lens in. It is hard for me to angle it in, but I am hoping to have that aha experience when I get it and then smooth sailing from there out. Have you ever scratched your cornea putting it in? I knicked my eyelid graph putting one in and hit the cornea pulling it out once, but both lessons learned and no real harm done.

[Tdwax]

still struggling

Am able to get left lens in and still having difficulty with the right lens. Due to multiple graph surgeries my eyelids are very difficult to open wide enough. They have been showing me how to angle in lower part of lens in, then push down, and the push rest of lens in. I have done it twice with a bubble, but am far from mastering this. It seems some of you have talked about putting the lens in this way. Any more tips? Due to my graphs, I don't have much sensitivity in the eyelids and keeps hitting them. I ended with my lids red and swollen. I am trying not to get disheartened, but it is challenging. I feel I need to relax, and when I am not my eyelids are tense and it makes it harder to open it. In need of your guys experience, strengths and hope.

[Tdwax]

Odydnas I asked them about modifying lens. They said contact them and if needed they could ship them to Boston.

[odydnas]

Thanks for the info. I live in NorCal and when I got my lenses at Boston, it took over 2 weeks, with muliple pairs (i think at least 8 pairs) and each pair was modified extensively. I think in the future, with my eye issues, it would be best for me to go to Boston, rather than USC, given the wait time to get new lenses and modifications at USC. I think if I had went to USC instead of Boston, I would have been there for months to get what I got done in weeks at Boston.

I'm sorry, I odn't have any more tips. Just patience and I am sure you will get it. We are all different, and you will find what works. Good luck!