Neil's back

[neil0502]

There is so much good information on this site regarding the Boston Scleral Lens that I have decided NOT to write an interminable screed (fear not: I don't know what that means, either) on my experience there.

It took me roughly 11 pairs of lenses and just over two business weeks to be fitted, but I left with lenses and I left incredibly glad to have them.

They will NOT be a miracle for me, but they will offer me significant relief of symptoms and should allow me to get a good piece of my play (not work) life back.

These lenses won't do anything to remedy my underlying accommodative and binocular issues, so I'm a long way from "happy camper" status where I can use my eyes the way I want to, but I am in significantly less pain, have significantly more stable vision throughout the day, and am slowly realizing that I don't have to be afraid of the car window lowering, shopping malls, airplane rides, or Home Depot.

I need to be evaluated for glasses OVER the lenses, including new Panoptx, Oakleys, or whatever ... for cycling, skiing (oh, please, oh, please), and other 'active' sports, so I've still got some work to do, but ... it's 'good' work!

I look different. My eyes are open much wider throughout the day. The redness is virtually gone. I rush to put the lenses in in the morning and I hate the idea that I have to remove them at night. I walked for hours in bitter cold and windy conditions in the Boston area and managed just fine. I also walked to and from the clinic most days, including in the dark. I'm a fool, like I said, but ... I'm still alive

This week, I'm off to Las Vegas to help my grandmother get through a few things--a trip that I would NOT have taken before the Lenses.

If you are debilitated (I don't mean legally disabled. I do mean that you are unable to successfully manage your symptoms to any reasonable degree with normal therapies and treatment modalities, and that your OSD is interfering with your ability to lead a "normal" life) by your severe Ocular Surface Disease, I would wholeheartedly recommend that you talk with your primary eye doc about a referral to the Boston Foundation for Sight.

I'll gladly answer any questions that I can about the lenses, the improvement, the people, or the process, but ... there are probably people here who are better equipped than I based on their longer-term experience with the lenses.

I have some catching up to do around here, but ... my vision's pretty far off. I hope to get back in the swing of things on the Board soon....

All the best,
Neil

[YGB]

Neil - as always, thank you for the informative update. I am very glad that the BSL's are working out well for you.

You mentioned that you tried 11 different lenses. What was it about the first 10 lenses that made them not right (were they uncomfortable on your sclera or was it vision or both?). How do your lenses feel now that you are back home? Do they start the morning comfortable and get less so as the day where's on? Are you lubricating with drops throughout the day?

I guess that's enough questions for now. As always, it is best to learn as much as possible from others BSL experience since it is a major commitment to make. Best wishes for a long, prosperous future with BSL's.

[neil0502]

Hey, YGB!

For those who need correction in their BSL's, fit comes first (since that's the hardest part to design and manufacture correctly), then visual acuity gets baked in. So the fit was the issue. An ill fitting lens might not allow proper tear clearance or might "impinge" (translation: dig into the eye causing pretty significant discomfort and (fluorescein) staining (visible under the slit lamp) after the lens is removed.

I didn't ask for, and wasn't really given, a particularly comprehensive education in the geometry, fitting parameters, and process as it played out. I sort of watched with rapt interest and asked questions on a 'need to know' basis. When I did, they were willing to share info.

It's still really, really difficult to use my "as the day goes" story as comparison because my underlying eye problems always got worse as the day progressed. That said, on the day that they dilated my pupils (one more dose of BAK!!), I really did NOT notice any progressive worsening of symptoms through the day.

I haven't really had much apparent need to use lube drops through the day. Neither have I particularly needed to remove, clean, and refill them during the course of a day's wear. YMMV.

I got home last night, late, so I haven't tried my old familiar places or things yet. Once I get the appropriate correction OVER the lenses, I'll put 'em through their paces and report. I'm something like 20/50- right now. It's almost entirely astigmatism. While the lenses handily zero out astigmatic error that lives in your cornea, it can't do anything about the astigmatism that lives in YOUR (in the eye) lens--the one you're born with. I have something like 1.25d of astigmatism in both eyes--a whole bunch to correct through accommodation when accommodation is already part of the underlying issue.

I've been (only half) joking, throughout the process, that the best that I could hope for was to get back to "just being permanently disabled." As I always say: I was declared disabled before any of this OSD stuff was even discovered in me.....

Hope you're well. I'm going for pizza and a moonlit walk on the beach. Ahhhhh.

[YGB]

Sounds great! At this point, do the lenses feel very comfortable or do you feel like there is something in your eye that is tolerable? Do you ever feel your eyelids going over that big lens? What type of dry eye do you have (i.e. MGD and/or aqueous deficiency and/or other dry eye issues)?

I went to my favorite pizza place for lunch today with the family. It was the first time we had gone in 7+ months (since the onset of my dry eyes). Prior to that, we went weekly. The pizza was awesome! After such a long hiatus, it tasted like heaven on earth

[Silverlady]

Great

Hey Great to have you back!!! I for one have missed your informative posts. Hope the lens work well for you.

Billye

[neil0502]

Thanks, Billye! Good to be back, too.

YGB: My eyes are really, really easily fatigued these days--surely because of the accommodative and binocular problems. Otherwise, I'm really quite unaware of the scleral lens being present in my eye. No dragging sensation. No discomfort if I squeeze my lids tightly shut. No leaking of fluids from the periphery onto the uncovered vestiges of the scleral. Pretty much nothing.

I would say, however, that--as I figured--there still can be some sensation of dry eye in the places NOT covered by the lens, but--at least in my case--it seems manageable thusfar.

My dry eye is the result of long term use of BAK containing cycloplegic eyedrops. It nearly destroyed all three components of tear production--aqueous, meibum, and lipid. I also have "corneal hyperesthesia--" an exceptionally sensitive cornea, diagnosed by confocal microscopy. One of the docs at BFS is actually quite interested in this field. I'm connecting BFS with Dr. Baudouin, in Paris, in hopes of furthering their collective research.

Covering my overly sensitive cornea MAY be at least as important as ensuring that my cornea remains hydrated while I'm awake.

I ate entirely too much pizza ... and regretted not one bite

Time to go do that removal thing ... and go back to being the Dry Eye Guy I was before ... at least until morning!

[kakinda]

Hi Neil,
we'll talk later but I'm glad you took this important leap forward. I was certain that there would be at least some benefit.
See, you don't always have to "break things in order to fix things". Hygiene and common sense regarding sclerals will limit the risks.
Take care
K

[Flick]

Neil - I couldn't be happier to hear that you've gotten some relief. If anyone on this board deserves it, it's you. Hopefully each day wearing the lens will allow your cornea to slowly heal. Good luck getting your glasses/prescription worked out!

Also glad to hear you did the hike as well, although it must have been quite chilly for you.

[neil0502]

Thanks, Kakinda and Flick.

Kakinda: I was probably stuck in the whole "the worse off you are, the more likely it is that the sclerals will work for you" mindset. I didn't think of myself as being in the same category as people with Graft vs. Host Disease, Stevens-Johnson Syndrome, Ocular Cicatrical Pemphigoid, etc.

The bottom line was/is: maybe I was. Some of you may well be, too.

Cold? Nah. IT was brutally cold. I, on the other hand, had so many layers on that I occupied the entire sidewalk when I was outside. By the time I got wherever I was going, I was basting in my own juices

-22F wind chill on Friday. Only walked down the hill to the Panera place for bagels and coffee. Sclerals were intact. Fingers had no feeling.

[YGB]

Good stuff Neil!

How did the initial fitting feel? The fitting I am referring to is the one where they fit you with the initial lens to see if you notice enough improvement. Based on this trial lens, it is determined as to whether you should proceed or not with the BSL fitting process.

I would think that the initial fitting would not be as comfortable as your final fit. However, did you notice significant improvement even with the initial fit or did you figure that since you made the trip from San Diego, you were going to go for the the "Full Monty" of sorts regardless of how the initial fit felt?

[neil0502]

The initial fitting felt okay, but ... even the "failure" lenses felt okay ... until they were removed.

In the case of the "failures," lens removal would immediately trigger a--shall we say--heaping helping of pain that would often last 12-18 hours. Serious ouch and yikes stuff, but ... nothing I couldn't handle ... just by bi**hing about it incessantly to any who would listen

This was that "impingement" thing. It was the result of sub-optimal fitting parameters and could--I was certain--be modified, so I grinned and bore it (read: took some vicodin and had at least one Tanqueray and Tonic*).

Determining how/whether the initial "challenge" worked is a collaborative process between doctor and patient. I was fairly optimistic after the trial pair or two that we were on fairly solid footing. Having had three muscle alignment (strabismus) surgeries in my life left scarring that they had to work around, complicating matters even more.

I was deemed a pretty difficult fit (along with a compulsive eater, inveterate womanizer, the guy that would never leave, a yogurt fanatic, an optometrist groupie, and several other things whose very content makes it improper to raise them here!)
--
*Trained professional. Closed course. Don't try this at home. YMMV, etc.

[Rebecca Petris]

I rush to put the lenses in in the morning and I hate the idea that I have to remove them at night.

That pretty much says everything I needed to know. Neil, I'm thrilled for you, absolutely thrilled.

[shells]

Welcome back Neil! I've been eagerly awaiting for you to post about how the new lenses were working for you. I was really hoping you would benefit from them, and I'm really happy to hear that they are providing some relief from the pain! I hope things get even better for you with continued use.

-Shells

[YGB]

I was fairly optimistic after the trial pair or two that we were on fairly solid footing.

Nice!

It sounds like in your case, the initial lens fitting was not necessarily an initial "WOW!" factor with the lenses, but a type of dry eye relief experience that gave you comfort that it was worth proceeding onto the next round of fittings. Correct?

[neil0502]

Pretty correct. I did not get what I call an "AHA!" moment. Rather, I noticed an immediate feeling of some relief, followed by a dramatic improvement in comfort when ... the heat came on in the clinic (it was darned cold out), I walked back to the hotel, or my buddy turned the car defroster on.

What gave me impetus to move ahead was the fact that I was already bought in to the entire philosophy and a believer in the potential of the lenses. I was hyper-sensitive to any contraindications, but--failing those--I was intent on moving full speed ahead.

Last night's venture to the gym, incidentally, allowed me to test two other things: the sclerals do NOT stick to my eyes after a steam bath (soft lenses did, in my case), and I was able to leap, rather carefree, into the swimming pool*

--
*as it turns out, the pool had NOT been heated in several days and was probably in the low 50's, inducing something just shy of a heart attack, but that's a different story.....