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Boston Sclerals #2

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  • Boston Sclerals #2

    I am writing this from the "meeting room" at the Boston Foundation for Sight. Just the fact I am able to be online here--in other words, that the BFS team has made a (very fast) wi-fi connection available--tells you a lot about the place.

    So a quick summary of the morning of day #1:

    I leave my parents' house in Lyme, CT at about 8 AM and I drive to Needham, MA, which is about 20 miles southeast of Boston. I note that there is a nice public library and a Trader Joes within a brief walk of the clinic.

    When I arrive for my 11 AM appointment at the professional building which houses the BFS, I check in and do the usual 15 minutes of insurance stuff. I am then led into a treatment room, where a young lady goes through a set of questions about my symptoms, and informs me that I will be answering this particular set of questions again in 6 months if I turn out to be a candidate for the lenses. Typical question: "How has your vision affected your ability to drive at night." The answers are "Likert-scale" types, with five ascending possibilities, i.e., "None, a little, moderately, severely, I no longer do this activity due to my vision or other problems."

    Next, Dr. Perry Rosenthal comes in the room and goes over my case in detail. After discussing the events that led me to the Boston Foundation, he sits back for a minute and says "this has been really shitty for you." I play this down a bit, but in my heart I know that he is right, and it is very nice (and rare) for a doctor to acknowledge that there is a human being sitting across from him, rather than just a disease. I do this on every visit with my patients--just say something to them that lets them know I am sorry they are suffering--and I have never figured out why more doctors don't make it more personal like this. Suffice it to say that I am impressed with the man.

    Within a few minutes, he has done a slit lamp exam, helped me get a pair of contacts in (patiently, as I have never worn any hard contacts before, and am a bit squeamish, surprising when you consider all of the other stuff I have been putting in my eyes the past 3 years). They feel a bit funny around the very edges--no pain, not "crackly" like the dry-eye feeling that we all know and love, but (I'm grasping for a word here, and this one is not quite right, but the closest I can find) ticklish. I have now worn them for about two hours as I write this, and the ticklish feeling is mostly gone, but there is a wee bit of heaviness that I am feeling. (Will this go away?)

    The next part of my morning is what blows me away. Mark Cohen, the executive director of BFS (a hulking, bald, constantly-joking man--he of the infamous comment at the Wellness Workshop), gives me the tour. He takes about 15 minutes to do this, and I am amazed to see that there are four rooms for patients to wait in. One is a media room, with DVDs, etc. One is a "meeting room" with a big wooden table and chairs all around. One is a quiet room, with a big suede couch and dimmable lights. And the most important of these is the kitchen, which is stocked with food, drinks, a full fridge, a microwave, a coffee-maker, and a whole lot of signs that say "take whatever you want." Mr. Cohen explains that patients do a lot of trying on contacts, wating for a few hours, trying on another pair, repeat, and so on, so they have created these rooms for our "down time." And there is good wi-fi throughout the place, so I can do all of my little geeky things (like this) while I wait.

    Next, I am placed in "the torture chamber," where a fan is blown on me for 20 minutes. I am amazed that I can survive this, though I have to admit, it isn't entirely comfortable. But I don't think it would have been possible at all without the lenses in.

    Finally (for now), I head to the kitchen and nuke myself some lunch, talk with some other patients, and just about now, they are calling me back for another exam. More to come...

    PS: If I am putting too much detail in these "reports" please let me know. I'm trying to help those "fence-sitters" decide whether this is right for them, but I don't want to bore you too much.

  • #2
    Erik --

    Well, assuming that I get a vote . . . so long as your eyes and your fingers and the wi-fi connection hold out, I vote for you to keep on telling us every single thing. On an informational basis, there are many patients out here who will benefit from your narrative. On a personal basis, I am rooting for you to have a positive outcome . . . your story is almost as compelling to me as "24" (ka-thunk, ka-thunk, ka-thunk) !

    best,
    mary

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    • #3
      Please continue with your detailed posts, as I am just getting the ball rolling on getting an appt there. I'm extremely interested in hearing how the lenses work for you and how much relief you get. I look forward to getting online and reading your posts. I have been checking many times today just to see if you had posted anything yet. It is very helpful for me, and I'm sure others, to have an idea of what to expect. Too bad more eye doctors aren't like Dr. Rosenthal.
      Cause of dry eyes: Meibomian Gland Dysfunction

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      • #4
        Originally posted by Erik
        Next, Dr. Perry Rosenthal comes in the room and goes over my case in detail. After discussing the events that led me to the Boston Foundation, he sits back for a minute and says "this has been really shitty for you." I play this down a bit, but in my heart I know that he is right, and it is very nice (and rare) for a doctor to acknowledge that there is a human being sitting across from him, rather than just a disease.
        This is profound.

        Reminds me of a brief scene I've never forgotten between me and Dan Reinstein, my doctor when I was living in England. Years ago at one of my earliest visits with him, when I was about 6 months into my LASIK adventure, I remember this scene where after a refraction he just kind of stops for a moment and sits back and with a sort of startled look on his face he says something like "Gosh, Rebecca... Your have really poor vision." No big deal to an outsider, but to me, after months of indifference and denial from other doctors... it was like a healing balm dropping gently into my soul.

        I do this on every visit with my patients--just say something to them that lets them know I am sorry they are suffering--and I have never figured out why more doctors don't make it more personal like this.
        Sort of self-protective mechanism that becomes automatic maybe? Life is definitely simpler without stopping to think about someone else's suffering. I remember back in February at our conference when Dr. Brown was giving us some pointers about - um, she didn't use this title but this is pretty much what it amounted to - how to visit your ophthalmologist regularly without developing a mutual and implacable hatred for each other. She talked about how ophthalmologists are kind of geeky numbers people and how they have a hard time with things that can't be quantified - like chronic disease, and the dreaded 4-letter P word, p-a-i-n.
        Rebecca Petris
        The Dry Eye Foundation
        dryeyefoundation.org
        800-484-0244

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        • #5
          Scleral Lens

          Erik I look forward to your posts.
          I am heading up there next week for a consultation.
          Keep it up and may you have the results you wish for and more.

          Comment


          • #6
            I missed something

            I read the posts by Eric but didn't see what the initial problem was. Poor schirmirs or TBUT or LASIK complications?

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            • #7
              Originally posted by kaypeeoh
              I read the posts by Eric but didn't see what the initial problem was. Poor schirmirs or TBUT or LASIK complications?
              I agree. At this point, I don't know if my eyes are bad enough to warrant the scleral lenses. It would help if Erik and others with the sclerals share their history (in brief), test scores, etc. Otherwise, keep the summaries coming, Erik!
              Every day with DES is like a box of chocolates...You never know what you're going to get.

              Comment


              • #8
                Originally posted by kaypeeoh
                I read the posts by Eric but didn't see what the initial problem was. Poor schirmirs or TBUT or LASIK complications?
                Sorry: I have told my story so many times here, that I am never sure who has heard it and I don't want to bore those who already got the long version. I had LASIK in 2003, had severe dry eyes about 6 months afterwards, with Schirmers tests that were consistently < 1 mm. My TBUT was also very low (a couple of seconds--can't remember the actual #s). I mentioned my different treatment successes and failures in one of my earlier threads on the BFS, but short version is that I have had some success with Restasis, which I have taken for almost a year now. My Schirmer's done yesterday was 4 mm both eyes, which represents an improvement for me, but the Schirmer's is generally very unreliable (or not reproducible, as we science-types say) and therefore i always take those with grain of salt.

                You always get a long answer from me when you ask a question-- just can't stop myself.

                Comment


                • #9
                  Um...not long enough. Is the problem strictly dry eye? If so, why do you need contacts? Are there vision disturbances such as residual myopia/ astigmatism or night vision problems like GASH?

                  I don't have dry eye so I don't visit this site often. My LASIK surgery nine years ago left me with severe night vision defects. Although RGPs solve a lot of the problems I can't tolerate them due to a poor TBUT. Which led me to this site.

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                  • #10
                    I don't have dry eye so I don't visit this site often. My LASIK surgery nine years ago left me with severe night vision defects. Although RGPs solve a lot of the problems I can't tolerate them due to a poor TBUT. Which led me to this site.
                    Low TBUT is one way of determining dry eye.

                    One of the uses of the BFS scleral lenses is for patients with vision problems like those from a bad LASIK, so it might be of help to you. See: www.bostonsight.org/faq.htm. You would need a referral as a first step by an ophthalmologist or optometrist.

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                    • #11
                      Originally posted by kaypeeoh
                      Is the problem strictly dry eye? If so, why do you need contacts? Are there vision disturbances such as residual myopia/ astigmatism or night vision problems like GASH?
                      I have a bit of GASH, mostly halos, but my real problem is dry eye, which nags at me (and sometimes does MORE than nag) night and day. I can live with my mild halos, but the dry eye drives me nuts.

                      Rebecca commented in her thread on her BFS experience that she had some visual improvements. You can read about her experience here:

                      http://www.dryeyezone.com/news/editor.html

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                      • #12
                        I guess I'm still a bit confused as to who is an appropriate candidate. What does "severely disabled" mean? I meet all of the criteria except for this one? I manage to get through my work days, uncomfortable though it may be. There are lots of activities I do not participate in because of the DES related discomfort.
                        Every day with DES is like a box of chocolates...You never know what you're going to get.

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                        • #13
                          I am also confused about who is a candidate. I would not say I am severely disabled by any means, but it is something I deal with on a constant basis, and have yet to find complete relief.

                          My life, and everyone elses on here, would be much easier if the pain could be subsided!!

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                          • #14
                            No pain in my case, but I had to give up the most enjoyable parts of my veterinary practice.

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                            • #15
                              There are no hard and fast answers about who is a candidate - nor are there likely to be. Excluding obvious cases, e.g. legal blindness or photophobia so severe you can't leave the house, "disabled" can be a very subjective term.

                              I think that from BFS standpoint, they look at the whole person and the life impact. Disabled doesn't have to mean you can't work. If despite having sought out all other non-invasive treatments somebody's having substantial quality of life impact, enough to be highly motivated to consider even sclerals, I'd guess they're at least likely to be considered suitable.

                              I'm always coming across people who say "Of course, my dry eye is not nearly as severe as so-and-so's, they sound much worse than me" but where based on their history and the other patient's, their test results and their quality of life impact, I would have said it's the other way around. We really can't even safely use each other as benchmarks for who is and who isn't potentially suitable.
                              Rebecca Petris
                              The Dry Eye Foundation
                              dryeyefoundation.org
                              800-484-0244

                              Comment

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