Announcement

Collapse
No announcement yet.

I have Boston Scleral Lens

Collapse
This topic is closed.
X
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • I have Boston Scleral Lens

    Rebecca, if you'd like to move this to another category, please do. I saw a couple that could be appropriate.

    I went to Boston in July for a one day consult at the Boston Foundation for Sight. This was to see if it may be a possibility for me. With specific expectations written out, I decided that I'd come back in a few months for the final fittings. I had only planned on the one day stay and had to catch a flight out the next morning.

    We drove 900+ miles to Boston. Well, my husband drove it all. The clinic is in a little town about 20 miles west of Boston. It's Needham. I had an appointment for a Monday morning in October. I went through several days of fittings, re-fittings, trial wearing times etc. My problems are very difficult as they include bad lasik outcome, one bad cataract surgery outcome (missed calculation), trigeminal neuralgia, dry eyes and a host of stuff. My next step would be a cornea transplant in OS. Then, I'd have my doubts about that because everything in that eye goes south.

    I've only had the lens a couple of weeks. I have worn them from 2 hours to 10 hours a day. I am not going for any marathons. A few days, I was sick and didn't even bother with them. The lens are easy to care for. They cover the whole "eye area" and you can just see the rim of the lens on the inside corner of my eye. They fit up under the lids, so there appears to be no lid rubbing. My vision is definitely better. Mostly, I have the weirdness of anisometropia much less wearing the lens. I need reading glasses, of course. That's a whole other thing. But, I can cope with that.

    My major, major problem was pain in OS which is the trigeminal neuralgia that has about floored me this past year. I could tell the few days at the clinic after wearing the lens that the pain level was much lower after (and while) wearing the lens. I believe keeping my corneas covered with the liquid "bandage" is imperative to stop the pain, or at least keep it within reasonable levels. The cost is what we've all heard. This will be submitted to my insurance (which is Blue Cross) and hopefully, they'll pay some at least. That part is unknown at this time. The insurance company would not commit to "one red cent" until I went and actually acquired the lens. How's that for a gamble? I had to take the chance.

    It will take another month or even more to see how well I can tolerate the lens. So far, the pain decrease has made a big, wonderful difference to me. I drove one night and my vision was much better than with glasses. I have to do that a bit more before I know if *all* the starburst etc are cleared up.

    I will write again in a few weeks or month to comment on my progress. I have to be careful that I don't give others a false sense of well-being, but I want to be honest and say how I'm really doing. Remember: we are all different. For me, there was nothing more I could do. I cannot work anymore and spend much of my time with (as my husband says) "an icebag over your face." He commented the other day that he had not seen much of that lately. If you want to PM me off the board, please do so.

    Lucy
    Don't trust any refractive surgeon with YOUR eyes.

    The Dry Eye Queen

  • #2
    Wonderful!

    Lucy, that is good news! It sounds like you are seeing improvement in a couple different areas. I certainly hope things continue to work for you. Keep us posted.

    Comment


    • #3
      Good for you Lucy! I've been wondering about you and those lenses. That's spectacular news. Any improvement for you is HUGE in my opinion. I hope the good luck continues and this really increases your quality of life. I have a good feeling about this...

      D
      Never play leapfrog with a unicorn.

      Comment


      • #4
        Scleral Lens Side Effects

        Hi Lucy:

        As a fellow scleral lens wearer: Congratulations and welcome on board :-)

        The fluid reservoir which is at this very moment in front of my eyes has also enabled me to participate in normal life activites again which otherwise were intolerable to me due to intense pain and tearing...

        Do you see your regular MD for check-ups or does your husband have to drive to Boston every once in a while?

        Did they check your eye for corneal swelling? You said you are wearing them up to 10 hrs. Straight - or do you require breaks?

        Thanks and good luck!
        Dysfunctional Tear Syndrome ("Dry Eye Disease") is a bane of modern society.

        Comment


        • #5
          Do you see your regular MD for check-ups or does your husband have to drive to Boston every once in a while?
          It takes two days to get there (Boston) and two days back, Philipp, so I will have regular appointments with my local eye doc. Yes, at the clinic, they checked for corneal swelling. I have an appoint with the local doc in a couple of weeks. I will have the lens in place for at least 3 hours before I see him. The Boston Foundation for Sight did say they expect me to have annual check-ups there, at least for the first few times.

          Did they check your eye for corneal swelling? You said you are wearing them up to 10 hrs. Straight - or do you require breaks?
          I did wear them for 10 hours. I cannot answer this question yet with any certainty. I've only had the lens 2 or 3 weeks. I'm not going on marathon "wearing sessions" just for the heck of it. If my eye(s) feel not so good, I take the lens out. I have to be careful when I'm going out for awhile wearing the lens. Sometimes you're out longer than intended and you just have to keep the lens on your eyeballs if you're not prepared otherwise.
          Don't trust any refractive surgeon with YOUR eyes.

          The Dry Eye Queen

          Comment


          • #6
            Good Luck!!

            I have also considered the lens for my sore right eye. I'd like to hear your progress.

            Chris

            Comment


            • #7
              yes, I would definately like to here more about this, too! it's all very interesting.
              -Amy

              Comment


              • #8
                This will be a learning process "in the works". However, I must say for others reading this, the pain that has been helped is just not the ordinary dry-eye gritty acid burn type. I have that, but in addition I have pain that covers more than one-quarter of my face. This area is around and in the left eye. You'd need to see a picture of the trigeminal nerve to know where. Roughly from the earlobe up to the scalp, down the left side of my nose and across the upper jaw. This pain has been helped very much, even by wearing the lens a few hours at a time. The pain relief usually lasts indefinitely. It's not gone entirely. Yesterday, I had the lens in and took them out after awhile. My left eye felt like I had an abrasion. Then I got a twinge of pain near my left brow and it began in full force. It's almost gone 24 hours later. I did not put the lens in today, but only because I had to leave early this morning and didn't get home until quite late.

                I'd suggest anyone wanting more information to check out www.bostonsight.org .

                I have an appointment to see my local ophth next week. I'm not sure what he will do, other than observe the condition of my eyes with the lens in - and out- and do the refraction. He will report his findings to the Boston Foundation for Sight doctors. I have to have regular check ups with my local doc.

                I do not think the scleral lens are for regular dry eye after lasik, for example. So many of the cases clear up before the one year mark, or shortly thereafter, it's not feasible to have the lens for just a short time.

                Trigeminal neuralgia:

                http://makeashorterlink.com/?X5D12592C

                More info on trigeminal neuralgia:

                http://www.emedicine.com/NEURO/topic593.htm
                Last edited by Lucy; 14-Nov-2005, 21:26.
                Don't trust any refractive surgeon with YOUR eyes.

                The Dry Eye Queen

                Comment


                • #9
                  This is extremely interesting, Lucy, and I think may be well worth investigating by others who have similar pain issues.

                  For those of you not familiar with the Boston Foundation for Sight, have a look at their website. They are doing some really great work. They are a 501(c)(3) and through the support of donations they are able to fund treatment for some patients.

                  Anybody with do-gooder inclinations (or guilt-assauging needs as the case may be ) please consider doing your part to help support these organizations which are doing such good work in the field of dry eye. You can donate to BSF on their website. We also collect donations for BSF and the Sjogrens Syndrome foundation in our shop at www.dryeyezone.com/shop.
                  Rebecca Petris
                  The Dry Eye Foundation
                  dryeyefoundation.org
                  800-484-0244

                  Comment


                  • #10
                    Thankful at Thanksgiving

                    I decided it was time for an update. I had a check-up with my local eye doc today after about a month with the Boston Scleral Lens. Dr. Rosenthal at the clinic insisted I be seen locally at certain intervals.

                    I'll try to be brief, which is not easy for me. First, I've had a dramatic decrease of pain from trigeminal neuralgia around my left eye. I had this after lasik 6 years ago. I did not have the pain right away, but after some time post op. At the 5 year post op mark, the pain had settled some and was not a "10" any more. I had cataract surgery one year ago and the pain came back with that surgery. Both unexpected and not welcomed. The pain was more intense this time around. I also had a good bit of anisometriopia from an incorrect iol calculation. This probably caused some accommodation problems (pain?).

                    As I said, the pain OS has decreased 50-75% since I've had the lens. This is why I'm so thankful. My husband say he can tell I'm better "because you're not on the couch or in bed with your icepack all the time." I still use it but am not wedded to it as I have been. I know it's early and I almost hate to say too much and keep my expectations reasonable. My expectations were: NONE. So, I am pleased.

                    My vision which is usually about 20/50-60ish with glasses is likely 20/25 now. I think I was reading letters on the 20/25 line today. I forgot to ask. Vision is not crystal clear, though. I have a lot of haze OS. I cannot complain, although others might not be satisfied with my vision. More than likely would not be satisfied. I am so thrilled at the pain level, vision just falls behind naturally. The lens do have to be removed and cleaned frequently. I am using a very liberal wearing regime. I am trying to wear the lens at least a few hours a day. Some days I do not bother. I could wear the OD lens for 18 hours, no doubt. OS becomes uncomfortable after a few hours. Hoping this will decrease with wearing time. I had one each of the following this week, 7, 8, 9 hours wearing time.

                    I want to be frank and tell you that I'm far from "fixed." My case is a bit lengthy and with a cataract surgery thrown in, dry eyes, trigeminal neuralgia, best glasses corrected vision 20/60ish, (add another cataract still intact OD) and you're got a mix! However, I am thrilled at my new (lesser) pain level. I can drive at night! I'm not very comfortable doing so, but can and will when I need to. The 4 diopter difference in my eyes is not a problem with the lens in place. When I remove them, I have the double-vision accommodation problem.

                    I am more than happy at this point with the lens. I know things could improve even more. I do not want to "brag" that everything is perfect. I have just seen so many "cures" in the past 6 years! Some people have had multiple cures. (hmph) They tell us of each one, forgetting we remember their "last" cure. Most people would not be satisfied with my vision either with, or without the lens. It's not the fault of the lens, but my awful cornea, plus cataracts, dry eyes etc. etc.

                    Two more things. One thing that is annoying is I have no close up vision and I'm used to wearing progressive bifocal glasses. (I know I can get more glasses made, but I am eye-broke money wise.) I have about 10 pair of dimestore readers of many strengths lying around. I've found you can buy them at the dollar store for a buck, when the drug store will charge $15 for the same thing. I'd rather have 15 pair for the price.

                    Lastly, I just found out my insurance paid for the lens. Yesterday, I got an eob from BC/BS and it paid in full. That was the first idea other than "total non-commitment" I'd had. I am still in shock. Prior to my going to Boston, they told me (ins co) that I'd have to actually get the lens before they would take it into consideration. Then I'd have to write to them explaining why I thought BC/BS should cover the cost!! I had to take this chance, and a big one it was. Still, I'm afraid it was a "mistake" and I'll receive a notice telling me it wasn't so. For now, that's the situation. I owe a big fat goose egg.

                    If anyone is curious about any part of my journey, treatment or care at Boston Foundation for Sight, please email me.

                    Happy Thanksgiving to all.
                    Last edited by Lucy; 22-Nov-2005, 22:40. Reason: typos
                    Don't trust any refractive surgeon with YOUR eyes.

                    The Dry Eye Queen

                    Comment


                    • #11
                      Questions

                      Lucy, that is absolutely marvelous! I know things are not perfect, but any degree of lesser pain is something to celebrate! And to have your vision improve also....you certainly have waited a long time for something to give!
                      But I am wondering why the lens help with your triageminal neuralgia. Do they actually keep your eyes moister? I find this so hard to comprehend, as I was one of those people who had trouble wearing contact lens because they made my eyes drier.

                      Comment


                      • #12
                        Thanks for the good new Lucy! I love to hear good news...
                        Never play leapfrog with a unicorn.

                        Comment


                        • #13
                          Happy for you

                          Lucy,
                          I am so happy for you!!!!!!!!! Right now my pain level is way up there so when I have more time I want to ask you more details about everything. I so know what you mean by when you say If the pain is manageable then I will start worrying about the vision. I look forward to a day without pain thanks for the hope... Peggy

                          Comment


                          • #14
                            Excellent!!!

                            Lucy: those are wonderful news. I really hope that you continue feeling better.

                            Blessings and happy thanksgiving!!!

                            Jessica

                            Comment

                            Working...
                            X