My experience with Boston Scleral lens

[Julie1]

Hi Flick,

I would also like to say that I am sorry that the Scleral lenses did not work for you. I hope that you are able to find other ways to manage your dry eye pain.

I am curious as to what your Schirmer's test scores were. Have you had a Schirmer's test at any other doctor's office? I understand that the doctors at BFS did not do a Schirmer's test but that your TBUT was normal. Did you try plugs, Restasis, etc? Do you have any idea of what your test scores were prior to treatments? I guess I am trying to figure out what is classified as moderate dry eye vs. severe dry eye. Maybe someone else out there can help me to understand what is moderate vs. severe.

I have been told that my eyes are severely dry (I am pretty much bone dry without any plugs or Restasis). With lower plugs and Restasis, my Schirmer's test scores are 5 and 7 and my TBUT is a 3 and 9, respectively. I had upper plugs inserted in my upper ducts in August, and I experienced overflow but no pain. The overflow was so annoying that I had the plugs taken out 1 1/2 weeks later. I recently had a flow controller plug put in my upper ducts, and I am now (according to my eye doctor) in the mild to moderate range in terms of dryness.

I guess the point of my rambling is that I am trying to figure out if I am a candidate for the Scleral lenses. I experience a considerable amount of pain on a daily basis (about a 5-7/10, sometimes I am a 2-3/10), even though I am now considered mild to moderate with all the medical interventions (plugs, Restasis, Omega-3s, warm compresses). How can I experience so much pain when my doctor says that I am now in the mild to moderate range? I am using artificial tears every 20 minutes to half hour. I am also taking 100 mgs per day of minocycline as I have slight blespharitis (sp?) I have another appt. with my opthamologist in late January (I could not get in any sooner) to discuss having the full plug put back in one eye so that I can compare the two eyes.

What do you guys think? Am I bad enough for the Scleral lenses? Or should I just be happy that I am considered to be in the mild to moderate range with all the interventions and just live with the constant burning? Or try a 6 week trial with one eye fully plugged? I probably did not give the full plug a full trial period and probably should make sure that I have exhausted that treatment option. I know that it makes sense to really exhaust every treatment option before spending a lot of time and money obtaining the Sclerals. But, if I exhausted the full plug option, would I be considered a candidate for the Sclerals? I am so sorry that I have gone on and on about my eye problems. I just thought I would post this to see what you guys think about this situation. I meant to ask Flick some specific questions but I could not stop typing once I got started. I have been so sad about these eye problems because it really has changed the way that I live life (I am sure that many of you can relate). Rebecca, I understand if you want to delete this posting or move it to a seperate thread.

Thanks again, Julie

[Rebecca Petris]

Hi Julie... I opted to split this to a separate thread because I think it deserves its own. I am sure there are others in a similar situation.

How can I experience so much pain when my doctor says that I am now in the mild to moderate range?

That's one of the biggest frustrations of many members here, I believe. I think it may help to separate this "mild, moderate, severe" business into two categories - as do doctors (well some of them): signs and symptoms.

When doctors talk about mild/moderate/severe, they are usually referring to what they see clinical signs of - such as staining under the slitlamp, or maybe a Schirmer score. That is frustrating to us because first of all it may vary a lot - day to day, time of day, etc, and secondly it may bear little or no relation to symptoms - i.e. HOW WE FEEL. That part only we can gauge - though there are also some tools like OSDI that can help us translate it into numbers.

As regards candidacy for sclerals, assuming one has exhausted conventional treatments, personally I'd say the final test is how much it's interfering with your life. It's pretty much self-selecting in that regard. Only people for whom DES has been life-altering are likely to put up with the cost and inconvenience of trying to get fitted for sclerals.

[Flick]

Hey Julie,

I haven't had a Schirmer's done in quite a while, but at my worst I scored around 3-4. I think my scores would be much higher today. I have lower plugs, and have been on Restasis for over a year now. Recently I've been on a meibomian kick and have been doing compresses and lid massages, which I think has helped.

I think where we differ is pain. It seems like you have some pretty significant pain, which I never had. You've tried all the mainstream therapies, so if you have the resources I'd say sure, give Boston a shot. If you end up making the trip, I'd recommend not expecting the lens to be the silver bullet that will give you normal eyes. I had pretty high hopes and if not for hearing that my tear film looked much better than I expected, I would have been feeling very down. Especially after making the time and financial commitment to get there. I think that's one of the main risks of trying an unconventional fix - if it doesn't work, you can be left feeling "if this doesn't help me, what will?"

I hope this helped. Let us know what you end up doing.

[YGB]

Thanks Flick! Your insight is greatly appreciated. I think one of the greatest challenges we face as dry eye sufferers is figuring out how to gauge information since we all have "dry eye" but yet it can be vastly different in signs and symptoms for each of us. Therefore, unlike other conditions or diseases, one size does not fit all.

Based on what I have read on the BSL, there are people with mild to moderate dry eye who have been helped (ex. Rebecca - although her primary reason for getting BSL was for vision). There are those where the BSL dry eye benefit did not outweigh the discomfort due to "improving" dry eye conditions (Erik and you). Then there are those who are so severe that the discomfort is worth it for the benefit (Lucy).

Green Eyes is a work in progress with the BSL and I am with others in that I am looking forward to hearing how she is doing.

Also, if any others have had experience with the BSL, please post your thoughts. It is important since as Flick said, it's not like we can justs go around the corner to CVS and try this out ourselves. It is a big commitment, and the more informed we are, the better. Thanks.

[Lucy]

Then there are those who are so severe that the discomfort is worth it for the benefit (Lucy).

That's a very good analogy. I'm 7 years into this dry eye thing. It came on suddenly with lasik surgery. I did not ease into it for many months or years. Bammo. I also went 6 years with increasingly severe symptoms before going to Boston. Let me say that I worked for 5 years after the lasik. I'm not sure how I managed, but I used to tell people my job was what kept me going. I did little else but work and sleep. With a second surgery (iol) on one eye increasing the pain and dry eye symptoms and also throwing my vision into something intolerable--was when I had to leave the job. Note it was surgeries both times that added to my situation. No matter, I just could not exist as I was and the Boston Lens was/is my only option.

By the 6th year although I did not know it, my body was working very hard trying to function with Sjogrens Syndrome taking over everything. I have so many more things than just dry eyes going on. Not trying to be melo-dramatic here (well, just a little). Most people who come to DEZ will get better within months or suffering their dry eyes. Almost everyone will be better by year one or two. I went the distance--6 years before getting to the point of BFS. My vision is corrupt with anisometriopia (eyes see two different images) plus the regular lasik crap GASH. Double vision in my left eye plus anisometriopia is a visual circus.

I'm making my third trip to Boston soon. This is just a little over a year and I'm headed back for some adjustments so hopefully I'll be able to use the lens which lately has been very infrequent. If I could function without them, I have better things to do and spend money on than zipping off to Boston from Michigan. Fact is, I can't. Well--I can, but any help the lens gives me makes a difference in my life. My pain level is intolerable. My Schirmer's tests have been consistent at 1mm left eye and 2 or 3mm right eye over the years. I'm not sure how to say this without sounding arrogant, because there are people who are totally blind. But, no one would be satisfied with my vision. No one who had correctible vision to at least 20/25 before lasik would ever be even be close to being able to accept what I have--especially since the cataract surgery.

Without some (any) help from the sclerals, my quality of vision is a big fat goose egg and life is not very good. My left eye constantly tries to close to escape the light and weird vision. My eyes fight for dominance. I'm not sure what and how I will try and live a somewhat conventional life as it's hard for me to keep my eyes open any length of time. It's amazing how much time I've spent in bed the last couple of years. I was, and knew from the start that I'd have to follow through with any extra trips to Boston for corrections. In the time I've had my lens (a year) most people will have gotten through their serious dry eye spell.

If you go, don't expect perfection. If you go, expect that you may not be helped. If you go, expect that you may have to do multiple trips. If you go, expect to have the best of care with professionals doing their very best to help. I hate writing this all the time. But, as one who has been under the dry eye "gun" for a very long time--and with a diagnosis of Sjogrens now--I will never get better. I really, really have to do the Boston thing. I've put in the years trying to overcome all this stuff and by 6 years it was obvious I neede something more to function. I got them and then had some serious health problems and the lens became unwearable most of the time. I've got to take care of things. But, remember, my trip could really be in vain. I know the clinic will do their utmost, but will my eyes cooperate? I'll make sure they do, (even if it kills me).

Lucy

[Julie1]

Thanks for posting your responses. I really appreciate your opinions.

I guess sometimes I just feel so desperate, and I don't know what to do. I know that I have changed as a person due to this dye eye condition. I hate that feeling, and I hate having this condition manage my life. I am trying so hard to manage my dry eyes, and it feels like it is the other way around.

I think back to a year ago, and I remember how different life was for me. I didn't sit at work and put artificial tears in every 20 minutes or sometimes more than that. I used to think about getting promoted and what I would do to accomplish that, and now I am trying to do everything I can to continue to perform at a satisfactory level. I am just doing what I need to do to keep my job. I have never, ever been a person to do the bare minimum. I used to go out with my friends on a regular basis, and now I go to bed at 9 every night because I can't handle the eye pain any later than that. I used to read for pleasure, and I was in the process of pursuing my MBA. I am no longer doing any of that. I feel that my life ended at 25 years of age, and it's all going to be crappy from for the rest of my life. I am sorry for my negativity, but I am just so tired of this problem. I am taking an antidepressant (thank goodness that it not causing more dryness), but I guess that the drug is not going to take care of everything. I need to learn how to cope on my own.

I don't really know what I am going to do as far as treatment options go. It makes sense to do more conventional treatment options first, but I just don't know anymore. I am so exhausted from all of this, and I just want to sleep all the time. I think it might make sense for me to at least put the idea of the Sclerals on hold until I have dealt with some of the psychological issues that arise with DES.