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  • Boston Sclerals Days 3 & 4

    A belated addition to my narrative today, the result of an intensive fitting process which left me little time at the laptop while I was at the clinic, and a couple of visitors at my hotel which kept me busy at night and unable to get on DEZ to update.

    The last two days have been filled with the exact same process, over and over: the trial-and error fitting process which I described earlier. For those who crave more detail, here you go:

    One of the BFS exam rooms has a long wall which has shelf after shelf of these little manila envelopes, which bulge at the center, where the single-lens contact case is holding a BFS lens. I have come to learn that BFS never throws away a "failed" lens (i.e., one that does not quite work for a given patient). Instead, they sterilize these lenses and put them on this wall, with all of their specs written on the envelope. These become the "trial lenses" and these are a big part of the fitting proces. After placing a lens on me, and having me wear it for an hour or two, Dr Rosenthal then brings me back into his exam room, and asks me how it feels, and is veryconcerned about the details. I will tell him, for example, that I have an itchy sensation at "3:00" and he will do a slit lamp exam. Sometimes, he will see something which explains my symptoms, sometimes everything looks fine. But he states over-and-over that the symptoms are the most important thing. Based on all of this, he will go to the computer, punch in some buttons which have to do with the size, depth, and flare of the lens (among, I am sure, other things), and he will then find a trial lens from the "wall-of-lenses" with a shape close to what he just punched into the computer. These trial lenses all have someone else's Rx in them, and so vision with them is often poor. When a new lens is placed, Dr R has the patient wait an hour or two (sometimes longer), and then he reexamines the patient to see how the lenses feel and how they look under the slit lamp. This process leads to a lot of "blind time" where I am waiting to see how the lens feels, and have a lens (or lenses) in my eyes which have someone elses prescription. When something is pretty good, Dr Rosenthal will order a lens to made for my Rx, which takes a couple of hours.

    Right now, I have a good fit and Rx for my left eye--I can barely feel the lens most of the time, though I notice that with more activity, I feel it a bit more. My Right eye has a good Rx, but one area of irritation at the teporal (outside) part of my right eye (or, perhaps, the lid). I have been going through a series of lenses to find a solution to this problem, and am slowly getting there (yesterday at this time, the right eye has 2 spots of irritation; now one of thise is completely resolved). Absolutely NO dry eye symptoms in either eye. When you see these lenses on your own eyes, you can see that the eye is literally covered with fluid 100% of the time with the lens, and so the eyes simply are NOT dry, hence no dry eye symptoms.

    More to come.

  • #2
    I can see now why it takes at least a week to be fitted. How do you pass the time with someone else's Rx? I know that would give me a major headache!
    Cause of dry eyes: Meibomian Gland Dysfunction

    Comment


    • #3
      I guess an ipod with some books-on-tape would be a good idea. I'm impressed that Erik may be finding comfort, but I must say the process sounds pretty maddening and exhausting.
      Never play leapfrog with a unicorn.

      Comment


      • #4
        scleral lenses

        Erik sounds great.
        So you do not have any dry eye pain or discomfort?
        I am so happy for you and I wish you the best.
        Can I call you to talk to you about it?

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        • #5
          bostton sclerals day 3 @ 4

          Erik: You said something about fluid coming out of the lenses. Does that mean that it gives a watery eye look?I do not like the look of epiphora, or watery eye. So, what are we saying here?

          Comment


          • #6
            Originally posted by monamour
            Erik: You said something about fluid coming out of the lenses. Does that mean that it gives a watery eye look?I do not like the look of epiphora, or watery eye. So, what are we saying here?
            No fluid comes out of the lenses if they are fit correctly, and my eyes do not water with the lenses in. The fluid is under the lens, which has a bulbous area in the middle, and the water just stays there, though because of microchannels, debris which builds up can be removed by the blinking process, if the fit is just right. No epiphora.

            The process IS time consuming, but it is not unpleasant. The other patients are very supportive, and the atmosphere is fun and nurturing (cliched, but correct).

            I just got back in town and have more to report, which I will get to within a day or two, but for now, I really need to roll around on the carpet with my kids for awhile.

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            • #7
              Can I call you to talk to you about it?
              You've got mail, aekahan. (Actually, a PM.)

              Comment


              • #8
                I'm now becoming more optimistic about the entire process after reading your and Rebecca's posts. It sounds like a group of extremely caring people work at the BFS. It's the rare exception to find a place whose main goal is to help people and not turn a huge profit. I am getting a referral soon, so I hope you don't mind some questions:

                1. How comfortable are your lenses and what is the longest you've been able to wear them so far?
                2. How big are your lenses?
                3. How is your vision with the lenses since you are looking through some fluid?
                4. Is it very time-consuming and/or expensive to clean them?
                5. How long did it take you to get an appointment once your eye doctor sent a referral?

                Thanks in advance for answering any of these questions. I hope these lenses are the answer to your eye problems. I'm glad to hear you had such a positive experience!
                Cause of dry eyes: Meibomian Gland Dysfunction

                Comment


                • #9
                  Originally posted by green eyes
                  I hope you don't mind some questions:

                  1. How comfortable are your lenses and what is the longest you've been able to wear them so far?
                  2. How big are your lenses?
                  3. How is your vision with the lenses since you are looking through some fluid?
                  4. Is it very time-consuming and/or expensive to clean them?
                  5. How long did it take you to get an appointment once your eye doctor sent a referral?
                  1. Too early to tell on the comfort level. One of the problems with the fitting process is that you get constantly poked in the eye by Dr Rosenthal and Dr Johns, which results in a sore eye, even without the lenses. All I can say at this point is sometimes the lenses are "invisible," other times one lens or the other gives me a foreign body sensation. Sometimes this goes away with wear. I am a virgin to RGPs, so I think I am adjusting. The comfort levels seems to be improving a bit each day.
                  2. My left is 17.5 mm, right 18.5. (Yes, they are that huge!)
                  3. My vision is crystal clear through both lenses with essentially no haloes. I have noticed a great decrease in starbursting at night, and I feel totally comfortable driving with them. (I drove with my glasses before, but with more starbursting to deal with.) You do not notice the fluid in front of you, once the fit is right.
                  4. Cleaning is very easy. Lobob > tap water > saline > insert.
                  5. I could have gotten an appt within a month, but work kept me away for about 4 months. I think 4-8 weeks is the norm, but they are getting more popular. The Boston Sclerals have in the last 3 years been featured on Oprah, CBS Evening News, Inside Edition, Good Morning America, and a few other.

                  This leads to an important point. Rebecca and Lucy both took some time (months) before posting as to their experience with the lenses, and both were very cautious in proclaiming this the "end-all" for dry-eye sufferers. I think that caution is warranted, and I will not be making any definitive "success" or "failure" pronouncements for a few months. Would be poor form for a patient to claim that a treatment has solved all of his/her problems only to retract a month later when they run into a longer-term issue. On the flip side, it would be equally bad for a treatment to be proclaimed a failure when it actually had not received enough of a chance to succeed.

                  Comment


                  • #10
                    Thanks Erik for your postings over the past week! I hope things work out well for you and I'm interested to hear of your results in the future!

                    I'm going to see Dr. T for the second time. I've been working with the tea trea oil for the "mites!" I have noticed a major decrease in eye lash discharge in the morning. They would be covered with "debris" upon waking. Now there is just minimal debris on the eye lashes when I wake up in the morning. Eager to find out what Dr. T's next step is....

                    I am considering the BSCL if this next visit does not turn out to be favorable, though...

                    Best of luck!

                    J-C

                    Comment


                    • #11
                      I understand that it will take some time for you to adjust to the lenses, especially being that you've never worn RGPs before. I found this information online: "The overwhelming majority of people who try RGP lenses adapt quite well to them within 2-3 weeks." I saw on the BFS where even babies and small children have been successful with the scleral lenses, so I am very positive about this aspect.

                      I read on the BFS website they had been on quite a few TV shows. That's a good thing, since I'm sure there are a lot people who could be helped by these lenses who would not have known about them otherwise. Also, I'm sure it will help with donations to their foundation.
                      Cause of dry eyes: Meibomian Gland Dysfunction

                      Comment


                      • #12
                        Originally posted by green eyes
                        4. Is it very time-consuming and/or expensive to clean them?
                        This part was a pleasant surprise to me. I think it's actually cheaper than in my old soft-lens days, because the rinsing and storage products you use are common and very cheap stuff. The only "contact lens solution" per se that you use with sclerals is the cleaner.

                        I soak them in hydrogen peroxide. About $1.00 for 16 oz and available anywhere.

                        I rinse them in tap water. $0.00.

                        I clean them with Optimum by Lobob extra strength cleaner. That's harder to get in drugstores these days but readily available online. One bottle seems to last me for ages. About $10 for a bottle.

                        I rinse them and fill them with Unisol. A box with three 4 oz bottles is about $7.50. You do go through a lot of Unisol because you have to throw it out not long after opening. But it's the only thing I've had to buy at all since starting sclerals more than two months ago. I think if you follow BFS instructions to the letter you're looking at at least 4 boxes per month ($30). I'm not quite that disciplined about throwing them away after 2 days though.

                        I had my first mini mishap today.... my own fault of course. I have not been carrying my gear around with me - never needed to have anything but a lubricant with me before this. However, this morning during church I was fussing with my eye a little, fishing a mucus strand out from under my lower lid. I must have dislodged the lens slightly because I felt a sudden rush of fluid and then I couldn't see well. Went to the ladies room and sure enough there was an enormous bubble right in the middle. No way to set it right without removing the lens. I had Nutratear with me but no plunger. I'm quite adept at removing Macros with my fingers but I've never managed to remove a scleral that way yet. I thought at first I could just wait, but decided to be on the safe side and go home right away to get it out and refill it. And a good thing too. Started hurting like the dickens ("i've got a headache in my eye" type feeling and lots of tearing) on the way. Plunged it out at home, re-filled and it's starting to get better now.
                        Rebecca Petris
                        The Dry Eye Foundation
                        dryeyefoundation.org
                        800-484-0244

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                        • #13
                          Rebecca, we went away for the holiday weekend. I traveled with my eye stash: glasses. Panoptx, more glasses, scleral lens and supplies. On day 1 riding in the car, I wore glasses and goggles. Extremely dry and had to use Muro constantly in left eye which made wearing the lens impossible.

                          Day 2, was starting out to put the lens in and low and behold, I did not have the insertion plunger. I improvised and tried to use the small plunger (without suction) to insert and it did not do a great job. I had to drive about 100 miles that day to get back to my husband as I had gone off on my own.

                          I thought I could manage driving the interstate for that distance with the ill-fitting scleral as it was. WRONG. I found myself having to pull off I-75 and take out the lens and resort to glasses. It was most uncomfortable and got worse quickly. I was wrong to assume I'd be able to make it driving for what was less than two hours.

                          Upon reaching my northern Michigan city of Petoskey, I immediately went to Walmart Optical and requested a plunger. Well, I was informed they didn't make them any more because "people would use them on the naked eye and cause damage." Thanks, Walmart eye guy. I didn't need a lecture but was hoping you'd have a large squeezy plunger and I'd be able to make use of my lens. I had to keep them in the luggage for the rest of our holiday as I was plungerless for the suction plunger. Now, I hope I can find mine at home here! You don't need a lot of equipment, but the plungers are a must.
                          Don't trust any refractive surgeon with YOUR eyes.

                          The Dry Eye Queen

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                          • #14
                            That's a bummer, Lucy. Sorry your weekend didn't turn out as good as it should have.

                            So the optical guy tells you that the general public is careless enough to use a plunger on the naked eye and cause themselves damage? But he likely belongs to the collective of eye professionals who would say, "But if you'll sign on the line right here, we can slice part of your cornea off and laser parts of your eye away. Trust us, it's no big deal."

                            Sorry just feeling sorry for myself today.
                            Never play leapfrog with a unicorn.

                            Comment


                            • #15
                              contact

                              Erik - I had written a PM a couple of weeks ago but hadn't heard back. Am sure you're busy. I too had LASIK ~3yrs ago at age of 20 but have induced visual difficulties in addition to dryness (and the dryness is quite severe) - e.g., couldn't go to an outside Boston night baseball game (or wouldn't want to) due to the pain, getting around, etc. Tried ~15prs of RGPs over ~2yrs, discontinuing about 1yr ago after thorough failure in ability to tolerate (for even very brief periods of time), including scleral lenses (in Virginia). Corresponded w/BFS ~2yrs ago but deffered visitation at time to continue pharmacalogical & more local scleral tries (unsuccessfully). Schirmers 0mm OU, etc. Reconnected w/Bill Rosenthal several weeks ago (before your visitation) & trying to resurrect a visit before gets too cold (which makes impossible) - call or write Bill each week to check in. I'm pretty experienced w/things (tried most all that I know - incl other 18.5mm sclerals) & consider to be in pretty bad shape. Would be of benefit if could ask you a few things via email (or PM or whatever is suitable to you). Is last shot, I think. If amenable, please send a PM. Thanks.

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