My experience with Boston Scleral lens

[Flick]

Well I was seen at the Boston Foundation for Sight a few weeks ago, and unfortunately didn't end up getting the scleral lenses. I didn’t post about this beforehand because I didn’t want to jinx myself, but in retrospect maybe if I had they would have worked for me.

First I want to echo what others have said about BFS – amazing technology, friendly staff, great amenities. I don’t need to repeat what’s already been written about this first class facility.

Although I don’t have severe dry eyes, they do bother me quite a bit and do have a significant affect on my day to day life, which is my guess as to why I was invited to come to Boston to try the lenses. I don’t have problems with pain – I would call it constant discomfort. I believe I have both aqueous and evaporative problems.

In the initial testing phase I was surprised to hear Dr. Rosenthal say that I was in the group of people with “symptoms but no signs” – in other words I had a tear film. So I guess my eyes have improved “sign-wise.” They didn’t do a Schirmer’s but did say that my TBUT was normal.

On to the lenses. I ended up trying on the scleral lenses one at a time, which allowed me to compare the effect of the lens in one eye to the other bare eye. I tried my right eye first. I was surprised by how forcefully the lens was put into the eye. I didn’t have the immediate relief that some apparently do, although my eye felt okay for an hour or so. Then I began having discomfort, and after a while my bare eye began to feel much better comparatively. Once the lens was taken out my right eye felt much better. So that wasn’t a good sign . . .

Then I tried the left. It felt pretty good for an hour, then started to irritate me for an hour or so, and then surprisingly felt okay after that until it was taken out.

With a lens in, my eye didn’t feel dry anymore and I could hold it open for quite a long time, but it didn’t feel good either. It’s hard to describe, and I couldn’t pinpoint what exactly didn’t feel good. I should add that this is all with trial lenses that didn’t have my prescription and that weren’t tailored specifically to my eye but that did fit my eyes well upon examination by the doctor.

So we decided that it wouldn’t be worthwhile to continue on with a custom fit. I think my situation is similar to Erik’s in that the relief from having fluid directly over my cornea wasn’t enough to overcome the discomfort of having a large piece of foreign material in my eye. I was expecting constant relief similar to what I feel right after applying artificial tears, which was probably overly optimistic on my part. (But come on, if you have dry eyes and you read through BFS’s website doesn’t the idea of a corneal liquid bandage sound like heaven on earth??) I think the lens is best meant for those who have pressing vision needs (like Rebecca) or those who have severe dry eye. (hmmm, just like their website says).

Am I glad I tried? Yes. Or else I would have always wondered. But the trip to Boston wasn’t too far for me, I have friends in the area, and my insurance likely would have covered the cost if they had helped me. So it wasn’t a huge gamble on my part. My unsolicited advice: if you have severe dry eye and have the means, give it a try, definitely. If you have moderate dry eye, think long and hard about it and maybe save it as a last resort.

Bottom line: my logic beforehand was that if the scleral lens can be worn by those with severe dry eyes, then my not-as-severe eyes will be able to tolerate them easily while still reaping the rewards of having a corneal bandage. And this turned out not to be the case. I had assumed that the indication that you must have severe dry eyes was because of the significant time and cost required. But now in hindsight I realize that it's because the therapy works best in those who need it very badly.

I wasn't going to post about my experience originally but decided to because a) I read through and followed closely the scleral lens stories of others on here and b) this is an expensive and time-consuming therapy that you can’t run to CVS to try out, so having as much information as possible beforehand is incredibly important.

[dianat]

Thank you for posting this, Flick. I was most certainly interested in your story. It certainly fits the description of What Mark Cohen said this year at the Dry Eye Workshop. He made it clear that people with severe symptoms are more likely to succeed with the scleral lens.

Still, I feel that we owe it to ourselves to explore every option available and I don't blame you one bit for trying. We all deserve 100% comfort.

Diana

[neil0502]

Flick-

I'm torn between feeling badly for you because it didn't work out as you'd hoped ... and feeling glad for you that--it would seem--your eyes aren't bad enough to reap the benefits of the Lens (if that's even accurate).

In the end, though, it reminds me of college when we all knew of people whose parents made too much money to get financial aid, but not enough money to afford college. At the end of the day, those people couldn't go to school, so ... I'm sorry it didn't work out.

I also have to use your data point as another reason to temper my enthusiasm (yes: the website made MY eyes well up with tears at the thought of how beautiful life could be with those bad boys in place) and brace myself for any outcome from my January trip.

I hope you find whatever management and coping strategies will allow you to continue to follow your dreams.

Thanks for sharing this story.

Neil

[Lucy]

Flick, thanks for posting about your experience. I have the Boston Scleral Lens since last October. Unfortunately, I have been unable to use them often enough to make a huge difference in my life. For a couple of different reasons after getting the lens, I could not wear them for many weeks. One was an infection that had nothing to do with the lens, but there is always risk of cross contamination and unless I completely left my lens out, I'd be risking more infection.

Secondly, Sjogrens has been doing a number on me. Since I've had the lens, my illness had gotten progressively worse. Eye-wise and systemically. I didn't know I had Sjogrens when I got the lens just a year ago. (I suspected, but had no proof.)

Am I glad I tried? Yes. Or else I would have always wondered. But the trip to Boston wasn’t too far for me, I have friends in the area, and my insurance likely would have covered the cost if they had helped me. So it wasn’t a huge gamble on my part. My unsolicited advice: if you have severe dry eye and have the means, give it a try, definitely. If you have moderate dry eye, think long and hard about it and maybe save it as a last resort.

Your advice is solid. If you have severe dry eye, you have trouble keeping your eyes open. I am in that category. I had nothing else to try, nowhere else to turn. However, people from this board have not been coming up with resounding results for their dry eyes, for whatever reason. It isn't because BFS isn't what they claim to be. The patient(s) just didn't fit--for whatever reason.

You have to think "long and hard" as you said about whether this is for you. You also have to be ready to shell out some bucks. Even if ins pays, there is travel expenses. My cost for a trip to the clinic for a week is about $1,000 and that is skimping. (I love eating out of hotel vending machines vs going to the sports bar.) :-)

I will be making my third trip to Boston in the near future to, hopefully, have a refit of my lens. They are not comfortable as they are now. I can wear them, but after an hour or two, they become painful. This is mostly in one eye. It's not the fault of the lens, or the clinic, or me. It just IS. My left eye is so painful, it is just automatically trying to close all the time. It's also my dominant eye, plus my "other" eye has a cataract. So, we're talking about much more than dry eyes in my case. If you think you can just slap the Boston Scleral Lens over your dry eyes and "be-gone", it doesn't happen.

I have no other choice and know I have to put out the bucks again for travel and accommodations. I'd rather not have to do this. Three trips to Boston in a little over a year adds up to a lot of money. I realized the implications when I started out, and am willing to follow through for some measure of improvement. The lens also takes care of much of my anisometriopia when I'm able to wear them. I then do not have the awful accommodative spasm going on. The only thing left for me would be a tsarrophy for my left eye. (I know-spelling)

One point: In Erik's case, being a physician, he is just not going to be able to tolerate and have to keep "messing" with wearing something that is bothering him on a daily basis. I no longer work and have the opportunity to have my schedule to devote time and care to what I need to do for my eyes. I'm not speaking for Erik, but this crossed my mind. Imagine a doc who is squinting, flicking his eyes, taking lens in and out, changing the fluid several times a day so he can see clearly. I doubt that would fit in his schedule easily.

If I can get some pain relief (and I did) and bring the anisometriopia under control and I'm able to wear the lens often enough to have a healing affect, it will be ok with me. I do not expect perfection and neither should you.

[calli66]

BSL questions:

1. The fitting process. Does the trial lens "comfort" level after an hour (or several?) of wear correlate with the final/actual comfort, or do the eyes and mind of the wearer adjust over a longer time period?

2. The trial lenses do not have the patient's Rx. Does this have a negative effect on the wearer's "perception" of comfort? (This is a subtle point, but from my own experience, blurry or distorted vision from an incorrect Rx causes great distress. It may be hard to distinguish between visual and physical discomfort. As the eyes attempt to adjust to a wrong Rx, strain, pain, and tension occur. Recall the recent post by (someone here) who found out her BSLs were the wrong Rx--and her description of the struggle to adjust to them.)

C66

[Flick]

Right on, Neil - I was definitely bummed that the lens didn't help, but glad to hear that my eyes are looking better. I'm also glad that BFS carefully screens candidates for the lens, which ended up saving me quite a bit of time and money. I think that's the main reason they have a 90% success rate with the lens - they don't set themselves up for failure.

Calli - my trial lens did have a prescription, just not mine, so I was able to see okay. I don't think this affected my comfort. I think that for those that will benefit most from the lens, the dramatic relief will quickly overrule any prescription mismatch. But for questionable candidates, I agree, this could be an important factor.

One more tip for future BFS candidates: if it's a nice day, you can easily walk from the hotel to BFS, if you don't mind walking along a busy highway. It's only about a mile away. Neil, with your January visit, you might have to stick with the hotel shuttle. By the way, I think it's smart to temper your expectations but I have a gut feeling that these lens will work out well for you. Good luck!

[Lucy]

One more tip for future BFS candidates: if it's a nice day, you can easily walk from the hotel to BFS, if you don't mind walking along a busy highway.

Ooh, Flick, I'd never guess anyone would want to attempt such a thing. I may be all wet, though. I do have to say my sense of direction would not allow me to either walk (or drive) there on my own. My hubby easily picked up the driving route the time we drove out to Boston. But, walking it? LOL.
Just for fun, I'd like to know if anyone else walked the route, or thought about walking it?

I'm definitely not big city. I'm also too short and the cars wouldn't be able to see me. The shuttle makes it very convenient for hotel dwellers to get back and forth.

BTW, when I posted my long rant above, Neil's post had not shown up yet. It doesn't matter, but I had not read Neil's eloquent post to you when I posted.

Neil, you can let us know later what you think of walking the route from the hotel to BFS. For a guy from all over, this might be just something you'd think nothing of (more likely in warmer weather.) We'll wait for your response after you've made the trip.

[Rebecca Petris]

the therapy works best in those who need it very badly.

Yup, that's the take-home message for sure. Thank you so much for sharing about your experience there, Flick. I'm with Neil, sorry it's not suitable for you but also glad you're not in enough pain that it would be suitable!

Calli,

1. The fitting process. Does the trial lens "comfort" level after an hour (or several?) of wear correlate with the final/actual comfort, or do the eyes and mind of the wearer adjust over a longer time period?

Couldn't quite follow this so not sure how to answer. I think the initial trial is more about establishing the extent to which the lens relieves symptoms than the comfort of the lens itself (not that it's possible to draw a line between the two with precision). But the comfort of the lens definitely gets refined as they hone in on the correct fit later in the process.

2. The trial lenses do not have the patient's Rx. Does this have a negative effect on the wearer's "perception" of comfort?

Not in my personal experience. In fact, at one point in my process (which was during an extremely busy week), we got a couple of lenses accidentally swapped and I ended up with a -9 lens in my plano eye. I also met the patient that got my lens. It was visually distracting, but we got a good chuckle out of it and I don't think it made any difference to either of us as regards figuring out whether the lenses felt right.

[neil0502]

Neil, you can let us know later what you think of walking the route from the hotel to BFS. For a guy from all over, this might be just something you'd think nothing of (more likely in warmer weather.) We'll wait for your response after you've made the trip.

I'm a pretty poor data point. I'm like a human example of "Professional stunt driver. Closed course. Don't try this at home."

Following me--either as a pedestrian, on rollerblades, on skis, or on a bicycle--is sort of an exercise in silliness ... and not at all recommended to rational human beings.

Flick: count me in!

[calli66]

Rebecca Petris wrote:

Calli,Couldn't quite follow this so not sure how to answer. I think the initial trial is more about establishing the extent to which the lens relieves symptoms than the comfort of the lens itself (not that it's possible to draw a line between the two with precision).

I was wondering whether the eyes adapt more fully to the lenses once you get home and start wearing them on a regular basis. I notice that with soft lenses, when I switch brands (different lens material), it takes my eyes at least a week to adapt to the new material. I was wondering whether BSL material would also be "perceived by my eyes" as a foreign substance. If I were ever to get BSLs in the future, I would want to give them, and my eyes, a full chance of adapting over a longer period of time. I can imagine that my eyes would react negatively to the change at first.
But as you say, most people needing BSLs notice immediate relief --outweighing any subtle irritations produced by the lens material, solutions, Rx factor, etc.

Like most people here, I keep the BSL possibility open--in a "last resort" category. What scares me is the hard lens riding on the sclera. My right eye has a scleral scar. And I'm paranoid about gas perms--it's irrational, I know--because I tried the regular ones in the past. When I got a tiny bit of debris under the lens, the pain was excruciating. Rebecca, does that ever happen with the sclerals?
Thanks, C66

[Rebecca Petris]

What scares me is the hard lens riding on the sclera. My right eye has a scleral scar.

There was a case like that there recently. I can't recall the details. I think the referring doctor failed to tell them in advance about some condition the patient had that was basically a contraindication for sclerals. However that's where the expertise of an inventor comes in handy. Dr. Rosenthal basically designed a new kind of lens to make it work anyway.

And I'm paranoid about gas perms--it's irrational, I know--because I tried the regular ones in the past. When I got a tiny bit of debris under the lens, the pain was excruciating. Rebecca, does that ever happen with the sclerals?

I know EXACTLY what you mean. Some eye doc made me try hard lenses back in the 6th grade, and then of course I went through many types of RGPs after LASIK. But this is a different kind of ballgame altogether and to the best of my belief the answer is NO, that never happens with the sclerals because of the fluid resevoir over the cornea - the material simply never comes in anywhere near close enough contact with the sensitive corneal nerves to create that kind of friction.

[Lucy]

My right eye has a scleral scar.

Calli-this could have some bearing on how the lens might fit you. I also have a slceral cut from cataract surgery and that's the eye I'm having the most problems with. So-your question is a very intelligent one and one that would have to be addressed by the doctors at the BFS for you as an individual.