Boston Scleral

[Rebecca Petris]

Hi all,

Just wanted to let you know that I went through the fitting process for sclerals at the Boston Foundation for Sight this week.

BFS is an awesome establishment. Medicine at its best... nonprofit yet absolutely uncompromising with respect to quality of care. The collective brain power within those walls is amazing.

I am trying to be disciplined and not talk too much about my experience until I am able to give the lenses a good long trial here at home under various conditions so that I can report back fully how they are working, what they are like, and my thoughts about the benefits and limitations for specific user groups like LASIK patients.

The experience itself will also be worth describing as I think that for people considering going to BFS, it would be very helpful to know as much as possible beforehand about what to expect.

So, I'll post again later this month sometime with details.

[Lucy]

I also have the Boston Scleral Lens since October 2005. I made two trips to Boston from Michigan for the fitting(s).

I need to go back to Boston very soon for tweaking of my lens. If anyone is interested, you may email me or PM me and I can tell you of my experience.

[Rebecca Petris]

Lucy's experience and a number of other threads on related topics are available in the Sclerals forum.

[neil0502]

Quick question for you scleral folk: so these things are about 18-25mm in diameter, and round. Clearly, that means that the inner and outer corners of your sclera are exposed.

How's that work? Do you have a sort of blissfully protected area under the lens, then the exposed areas feel really sensitive to wind, dust, light, etc.?

Or don't you really notice the outer, exposed parts?

What I'm trying to get back (for those who haven't noticed me saying the same thing over and over and over ) is my active, outdoor life--motorcycling, bicycling, mountain biking, rollerblading, skiing, watersports, airplane travel, visiting my friends in Colorado, etc.

Do you have any experiences that might help me understand what's possible? Maybe your pastimes aren't the same as mine. If not, maybe you can tell me whether you're able to do any of these things quite well with the BFS Lens in place. By "quite well," I mean stable vision (stable at whatever best corrected acuity the lens gives you) and freedom from most DES pain (or is the answer "I can do those, but those unprotected areas hurt and scream out for constant drops AND I still wear my Panoptx glasses?":

• Drive with the windows down?
• Walk leisurely through the mall, the grocery store, the Home Depot, etc?
• Walk WITHOUT "goggles" in the cool night air?
• Have the car defroster on high, blowing directly at you?

While I'm fairly comfortable with the idea that drops, wraparound glasses, goggles, etc., will still be a part of the equation, I'm just trying to understand how helpful the Sclerals were for those of you who walked from Needham with them.

I think it's best for both doctor and patient to have clear and reasonable expectations from the get-go. This--rather than trying to provoke my own anxiety--is really what I'm after

TIA,
Neil

[Lucy]

Neil, since I haven't been rollerblading lately (ever), or mountain biking....I'll have to let Rebecca tell you how she manages doing those activities. :-)

First of all, drive with the windows down............are you nuts? It's either 90 degrees here or 15 degrees, so that's not really a moot point for me. Hell yes the need for goggles over the sclerals. But, I would not have the window open. Others can probably pull this off. I'd say riding in a convertible would be a definite YES for Panoptx over the sclerals.

I'm not wearing my sclerals at all right now, but when I was able and it was worth it, I needed goggles when it was windy or breezy outdoors. Also with the car HEATER being on, not so much with A.C. but the heater is different. I wouldn't need goggles if I was in Menards unless it was for an extended length of time. Probably would not need goggles in cool night air.

YOur problems being different than mine, may vary. While I was at BFS, I heard them telling a couple of other patients who already had the lens prior and were instructing them to use with goggles.

For you--I'd guess while you are in motion doing sports, goggles would be a good idea. For me--doing 2 mph on my treadmill does not call for goggles.

[neil0502]

Thanks, Lucy. This is exactly the kind of information I was looking for.

The first time I actually SAW somebody WEARING sclerals face-to-face, we were talking on a breezy day. The area of his eyes directly UNDER the sclerals was quite clear and white, but those outside corners looked red and painful and he was using drops awfully frequently.

I'm thinking that's going to be me if I try to regain too much of the "former life" too quickly. There's a lesson for me to learn here.....

Do the Boston lenses do an impressive job of stabilizing your vision? For me, that seems to be as big a problem right now as all the others--especially with the wind-in-your-face pursuits that I miss. Nothing like heading down a hill on your bicycle at 45mph with tears streaming out of your eyes and the view blurred like somebody smeared Vaseline on the ol' Panoptx lenses....

[Rebecca Petris]

How's that work? Do you have a sort of blissfully protected area under the lens, then the exposed areas feel really sensitive to wind, dust, light, etc.?

Or don't you really notice the outer, exposed parts?

That's me. Whatever discomfort I might have from time to time I don't ever feel like I have a specific awareness of the exposed areas.

Do you have any experiences that might help me understand what's possible?

Well maybe.

I've had my hardest eye test this week. We were snowed/iced in, and then when things cleared a little I had the heat going full blast every time we got in the car. I know it's not "cold" here compared to the Northeast, but we'd lived in Florida for the last coupla years so we're wimps. While I don't direct the vents at my eyes, the windshield defroster ALWAYS feels like it's blowing straight at me.

Back in Florida, in a car with air conditioning on I would definitely never have been without wraparounds. I would also almost never have been outdoors without my Panoptx. When we first arrived in Seattle, and had a lovely long Indian summer, I was surprised to find I was often OK outdoors and driving without any eyewear. Not necessarily great but quite manageable. Then winter came. This week with the cold, I've been blinking constantly and needed more lubrication because we've had the forced air heat on all the time and it's been so dark (and slippery) I really couldn't wear wraparounds in the car.

I've gotten by, and I can't say I've been in pain. More eye awareness, a lot more blinking, more lubrication. Not sure I can describe the more awareness thing. It doesn't feel like lens awareness, but I suppose what it amounts to probably is a combination of the top lids scraping over the lenses and some exposure pain on the exposed parts.

• Drive with the windows down?
• Walk leisurely through the mall, the grocery store, the Home Depot, etc?
• Walk WITHOUT "goggles" in the cool night air?
• Have the car defroster on high, blowing directly at you?

Windows down, yuck. Panoptx on and still wouldn't want to do it for long.

Walking through stores malls etc, I manage OK. Definitely much worse in Florida with the a/c. Except - and I don't know if this is just because of the recent thread that I've noticed it but Walmart drives me nuts.

Without goggles in the cool night air, all I can say is I was fine in Seattle in Aug, Sept and Oct. Not so much now, especially if there is any wind. (On the other hand Florida does not have cool night air.)

Car defroster on high blowing directly at me, well, like I said I've scraped by even without Panoptx when necessary, but this has been my most uncomfortable situation.

But... those are all passive activities. I feel sure that IF I had some kind of focused outdoors activity other than getting from here to there or watching my daughter play at a park, I would notice my eyes less than I do now.

While I'm fairly comfortable with the idea that drops, wraparound glasses, goggles, etc., will still be a part of the equation, I'm just trying to understand how helpful the Sclerals were for those of you who walked from Needham with them.

For me personally, Sclerals+drops+panoptx+etc. is a much better deal than drops+panoptx+etc.

[Rebecca Petris]

The first time I actually SAW somebody WEARING sclerals face-to-face, we were talking on a breezy day. The area of his eyes directly UNDER the sclerals was quite clear and white, but those outside corners looked red and painful and he was using drops awfully frequently.

Breezy is not good. Gotta have wraparounds over sclerals if there's a lot of air movement.

Do the Boston lenses do an impressive job of stabilizing your vision?

For me yes. This is a key requirement for me too because I've had fluctuating vision ever since LASIK in 2001. With a liquid filled gas perm, the cornea part of the fluctuation problem is solved. Any remaining issues would be from drying of the top surface I would assume. If I am in a challenging environment, I'll notice my vision will start to drift downhill during the day but my drops sharpen things right back up. On a really long day or if I've say drifted off to sleep on a plane I may have to take them out and refill but I don't think I do that more than say once a month.

It's my personal experience - well no, more like my personal speculation - that the goop you use on and under the sclerals may play a pretty significant role in comfort and vision stability. This was my experience with smaller lenses and Macros too. Different stuff works for different people. For me it's Lobob cleaner, Unisol to fill and NutraTear to lube. Actually I think I would be tempted to fill them with NutraTear if it weren't so scary-looking.

[neil0502]

Thanks, Rebecca. Thanks much.

So

1) There's no chance these things will return me to the "no-thought required" life that I (we all) seek. Ah, well. Realistic expectations are the goal;

2) It really sounds as though you have to be in fairly bad shape to appreciate the incremental improvement offered by the Lens, AND to have the tolerance for its particular requirements: insertion/removal challenges, likelihood of having to remove, clean/refill during the day, potential sub-optimal wear times, etc.

3) My thoughts about the "moving air" sports are probably going to be answered with: just because they shoot cortisone in the quarterback's throwing arm ... that doesn't mean he's good as new. Failure to acknowledge this and behave accordingly could result in serious pain and/or damage. I'll definitely be crawling before I walk.

4) Falling asleep on airplanes? WITH the lenses in? This is definitely one of my hot-button issues. CAN you do this (safely)? If so, what's an acceptable length of time for a nap. I'd heard something in the sub-1 hour range might be okay. For me, this would be a gift. When MY eyes go berserk, a nap--even a half an hour--can make the difference between "managing" and "not managing."

5) So the front surface of the lens needs re-wetting periodically to retain best acuity, huh? To what do they attribute this? Is it some measure of the Boston material itself dehydrating (I know it transmits oxygen quite well, but assume it does NOT do this for liquid), or is it more accumulation of lipids, dirt, and miscellaneous debris (if you know, obviously)? Doctors have ALWAYS told me that my contact lenses "look perfect," so ... maybe the ONE thing I have going for me is a reasonably 'clean' tear film that MIGHT help me in this arena (as if )

For all of this stuff, I know that My Mileage May Vary, but it's still good to get more data points on the table.

One more question, s'il vous plait: remember: my underlying vision is crap (MAYBE the ONLY advantage that SOME of the LASIK 'victims' have)--especially at near where I require about a +7.50 lens AND astig correction to see. When you INSERT that FIRST lens, is it VISION-critical, or is it your sense that you could guide it in by feel and/or muscle memory. With my existing soft contact lenses, I never need to look.....

Thanks again, Rebecca and Lucy.

On a HUGELY positive note: Bill @ BFS told me that my insurance would cover 90% of the lens and professional fees. The proverbial kids won't starve THIS month!

[Rebecca Petris]

1) There's no chance these things will return me to the "no-thought required" life that I (we all) seek. Ah, well. Realistic expectations are the goal;

Yes no maybe. I have to say that most of the time, for the most part, I really do not think about my eyes and am not in pain. But then I don't have your condition.

2) It really sounds as though you have to be in fairly bad shape to appreciate the incremental improvement offered by the Lens...

Art not science definitely. I'm not in "bad" shape compared to a keratoconic or someone with 0 Schirmer, and here I am happy as a clam in the lens. Others in much worse shape have found the tradeoffs did not work for them.

4) Falling asleep on airplanes? WITH the lenses in? This is definitely one of my hot-button issues. CAN you do this (safely)?

I have no idea whether it's safe or not and if you ask I'm sure you'll be told no, but I do it, for half an hour or an hour at a time, occasionally longer.

5) So the front surface of the lens needs re-wetting periodically to retain best acuity, huh? To what do they attribute this?

Needs rewetting for comfort as well.

Reasons... Dunno the technical details, and I've never understood the ins and outs of materials etc, I just kind of assumed that the conjunctival dryness of the upper lid plus the sheer size of the durned thing.

If you can wear a lens now whose topside looks good then, well, fingers crossed, hopefully that's a good sign of how you'll fare.

When you INSERT that FIRST lens, is it VISION-critical, or is it your sense that you could guide it in by feel and/or muscle memory.

Best guess, vision sure helps but you could learn to do it by feel etc. and I"m quite certain BFS have had to train people with your vision or worse on ways to do it. Heck even with me, after I've yanked my lids open as wide as they can go it's an even chance I'll bump the lens or inserter on a lid margin on the way in and when it's that near, I'm just going by feel too.

[green eyes2]

I wish I could respond to this, but I have been unable to wear my scleral lenses because they are the wrong prescription! While in Boston I told the doctors that something did not seem right about my lenses. I told them quite a few times that I felt dizzy and disoriented while wearing the lenses and did not think I could get used to them. Why the prescription was not double checked after mentioning this I do not know.

While trying to wear the sclerals for several hours a day, the week after I got them, I was thinking that this was part of the adjustment process and my eyes needed to get used to them, but I soon realized it was not and that something was wrong. I contacted the clinic several times for the past couple weeks and was finally told to check the edge of the lens with a very strong magnifying glass for a number etched onto it. I was told there should be "7" on my left lens and a "6" on my right. When I checked there was a "6" on my left and a "7" on the right.

This past Tuesday (11/28), I was told that I would be getting a new right lens. Why only a new right lens and not a left I have no clue. I'm still waiting to receive the right lens. It has been very frustrating after all this time to still not have the correct prescription. The lenses do resolve the dry eye for me and I could wear them outside with the wind blowing with no problem, but they are of no use to me with the wrong prescription. If I try to wear them I get dizzy, nauseous, eyestrain, and headaches! If I reverse them then I can see, but the fit is so uncomfortable. Fortunately, my eyes have been doing well the past week and I hope they hold out until I get replacement lenses.

[neil0502]

GreenEyes: These sorts of clerical errors may be the most frustrating of all. It's probably easier to reconcile ourselves to something not solving our problems--they're rather complex--but ... this sounds like a plain old fashioned screwup that just creates work to get resolved. The good news is that it sounds like you're almost there.

I'm sorry you had THAT part of the experience, but am equally encouraged by your experience with the resolution of symptoms.

Rebecca: thanks again for the add'l information. I have the feeling that LASIK tended to damage an area roughly the size of the surgical zone (what? 6mm or so?). I am concerned that--with the BAK--the damage would involve the entire front surface of the eye. The degree of innervation across the various anterior segment components, and their respective responses to the chemical damage, however, may vary, but ... it's likely that the area 'outside' the BFS lens will be barking in my case. We shall see.

It's encouraging (and I'm happy for you) to hear that you're happy as a clam in this lens. Glad to hear about the nap thing, too. If you don't awake with them soldered to your eye, that's good enough for me! There are simply times when wake vs. sleep isn't really a conscious decision

Thanks again,
Neil

[green eyes2]

Neil..yes, it is very frustrating. What is really frustrating is for a couple weeks I thought I had a problem adjusting to the lenses and was getting headaches, eyestrain, etc. from trying to wear them.

Thank goodness this was not some life-altering mixup like a fertility clinic or operating/removing the wrong body part! I am hopeful that I will eventually get the correct prescription. If not, then I will have to become a regular pest and email, fax, call or whatever it takes to get this fixed. These lenses cost thousands of dollars and they need to get them right!

[Rebecca Petris]

Why only a new right lens and not a left I have no clue. I'm still waiting to receive the right lens.

Greeneyes,

I am obviously just guessing here but the explanation that springs to my mind is, they want to first straighten out the overcorrected eye as that is the one that is to blame for the dizziness etc. They may feel it makes sense to first see how you fare with a fully corrected right eye and an undercorrected left eye (i.e. monovision)? And to make certain that the change of prescription really does seem to be the only source of the problem. At any rate I am sorry it's been a frustrating process and hope you have your lens(es) soon!!!

[Rebecca Petris]

GreenEyes:
Rebecca: thanks again for the add'l information. I have the feeling that LASIK tended to damage an area roughly the size of the surgical zone (what? 6mm or so?)

Ablation could be anywhere from say 5.5mm to 8mm or so, and the flap diameter more like 9mm. However, the damage situation is a little more complex than this. The obvious answer that the bulk of the medical literature has focused on was denervation from the flap cut and the ablated tissue but there are also other theories ranging from damage by the suction ring to limbal stem cell deficiency from the "wound" (ablation). I attended a symposium once with some fascinating research on that latter point where they basically did something akin to PRK on mice corneas. Only reason I'm mentioning this is some of the LASIK dry eye cases clearly are pretty complex. Whether this does or doesn't make them any more likely to be treatable with sclerals I've no idea .