In regards to Erik's narrative: Devil's Advocace View

[Lucy]

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.

Erik is doing exactly the opposite of what I did when I went to the Boston Foundation less than a year ago. I did not write about my experience in detail. I did write on the boards that I was planning on going, that I did go for a consultation and then back for the final fitting.

I offered to have people ask me privately about my dealings with the clinic and my results. Oddly enough, I had a woman read my name in People Magazine (editor column) and "special contacts" and she called me. She called all the people in my town with the same last name until she located me. My phone is listed under my husband's name. I had written a remark to People about bad surgical results. She knew I was referring to the Boston Scleral Lens and was on her way there.

I have to say that I am very wary of writing profusely about my experience. While I have benefited from the lens, I don't think most people understand the use of the lens. The only thing left for me is to have my left eye closed surgically. Period. (Especially since the diagnosis and worsening via Sjogrens Syndrome.) I have visual problems in addition to dry eyes. I have best corrected vision with glasses of about 20/60. I also have anisometriopia resulting from cataract surgery on one eye. The lens also correct this somewhat. I have trigeminal neuralgia in my left eye caused from the lasik surgery and exacerbated by the later cataract surgery.

As Erik reported, we are talking about $10,000 worth of lens and travel etc. How can I honestly write and embellish about my experience when I may be leading those "sitting on the fence" to go one way or another? I can't. I have heard from people who have the lens and the lens is now sitting in their drawyer. My health insurance paid for my lens. I paid my expenses for two trips from Michigan to Boston out of pocket. Going in, I did not know if the insurance would cover my lens or not. They would not commit to me or BFS until after I had been issued the lens. Imagine the tension there. You have to get them (the lens), then we'll consider. Just write and tell us why you think we should cover it. Fortunately, the lens were covered, but I walked out of the clinic knowing I may be responsible for at least a portion.

I am afraid this is taking on a sort of circus atmosphere, with people reading with anticipation. I know I am reading Erik's report with anticipation. I also know that people are desperate. I also know many people's problems may be temporary. I know at times my eyes are so bad, I'd sell my kids, mortgage the family farm - all in the name of relief. I don't have kids (plural), a farm or a mortgage, so it's hypothetical.

I felt it necessary for me (a mere person with crispy, cruddy eyes) to be low profile and not embellish this experience. I'm honest and said I have been helped by the Boston Sclerals. I am also not an every day case of dry eyes.
I had to stop working last year because of my eye conditions and applied for and was awarded Social Security Disability.

Why am I getting such a "feeling of butterflies in my stomach" with Erik's report as well as Rebecca's?

I know how desperate we can be. I don't want to feel responsible for fence sitters thinking about the lens making a decision one way or another. I think the Boston Scleral Lens are for extreme cases and it seems to becoming something for the mainstream dry eye? I don't think so. When I decided to go for the lens, I made a private decision to do so after much research and realizing that my case was getting worse. I did not have a lot of glory stories to read. I had to cut to the facts and what I was willing to risk to try the lens. For someone now living on social security (husband retired also), this was a big leap of faith for me.

Erik and Rebecca are much younger than I. Erik is a practicing physician and these lens are just likely will make his job easier and his life easier. He is also in the US Army and I'm proud to know most any soldier. The successful use of the lens could mean new possibilities for people who have been unable to work. It could mean a whole new life for others who have been disabled by their eye conditions. I hope the lens bring all good things.

For me, it is a matter of opening my eyes or not. It has even become more so since I've gotten the lens last October. I have been ill much of the time and my eyes are my main sore point and gotten unbelievably worse with Sjogrens. I've never worn contact lens in my life and never wanted to. Thick glasses were with me from 7 years old to well--never mind. I thought I would treat myself to lasik as I was a mature, employed adult with vision almost -10. I could afford it, what the heck.

Back to the lens: Now, if we can get clinics out in the population and available at reasonable fees, then it's a whole different ballgame for the purpose of dry eye. I feel people who have diseased eyes and need the lens have probably already gotten them. They, or their doctors researched enough so they landed on the BFS website. That's what I did. Then I spoke to Dr. Rosenthal and my ophthalmologist and we set the wheels turning.

I'm writing here to dampen the fire a little for those reading about the lens. I always was a devil's advocate. Sorry, but I just don't feel good about all the hoopla being written about this. Even though I know Erik will be objective in his report and I can't wait to read it, I can just feel the atmosphere is running a bit high. Just who is qualified to help the fence sitters decide?
Who will the fence sitters look to if they are disappointed? Or spent money they shouldn't have? I just know that person is not me and question who wants that responsibility.

[Rebecca Petris]

I can understand some of Lucy's concerns here, even whilst being surprised at and even pained by some specific comments.

It is true that we have seen, over the years, overly hyped-up treatments come and go. We've seen people get excited over any number of legitimate or snake-oil treatments, none of which (naturally) was anybody's cure-all. It is after all natural to get one's hopes up. Sometimes the fault lies with flagrantly misleading advertising. More often it's just human nature. Every one of us has the right to our own individual responses to things and people need to have hope. Unfortunately when solutions have not been forthcoming, hopes can be raised too high too easily. Frankly, I've been deeply concerned lately at seeing this with the AMT treatments. As yet I personally have not known of a single individual who could come to me six or twelve months after AMT and say "Gee, I'm glad I did that. It helped me."

I think it's true that the scleral is not going to be appropriate for a large number of the people here - some don't have a severe enough condition to warrant it, others may not want or tolerate that particular kind of treatment. That problem however is largely self-policing. If you're not a good candidate, they won't let you in. If you're intimidated by a large lens in the eye (at least, more intimidated by that than the quantity of pain you're dealing with now) you won't pursue it. What's important to me is that for those few for whom it MAY be VERY important, that they get all the information they need in order fairly consider it as an option. This may be important because so many physicians do not know about or understand the sclerals and so the patients find themselves in the position of having to educate their doctor. That is why I shared MY experience, and that's why I'm so pleased to see Erik sharing more details of HIS. We know you'd never embellish anything, Lucy, but I hope your use of the word embellish was not meant as a reflection on anyone else.

I think the Boston Scleral Lens are for extreme cases and it seems to becoming something for the mainstream dry eye? I don't think so.

I don't think so either. None of the stories here about dry eye have been from "mainstream" dry eye patients. I've never heard BFS describe sclerals as a treatment for "mainstream" dry eye. Now and then a patient who is new to the idea asks questions as though it might be, but once they learn more about it I think they start to understand. As a practical matter, who's going to spend $10k or travel hundreds/thousands of miles to treat "mainstream" dry eye?

I feel people who have diseased eyes and need the lens have probably already gotten them.

I wish it were so. Only a tiny number of people (relative to the need) have. Many people who are facing surgery for a variety of eye disease have no idea that they might be able to get a non-surgical, low-risk solution.

Just who is qualified to help the fence sitters decide?

I think it's about informing, not deciding. People can't make a decision about something they've never heard of. This website was started to inform and educate people about things they do not know about - certainly not to persuade or assist with decision-making. As with any other medical information, as people learn about new options, it is then up to them to go to THEIR doctor and discuss the information and whether it has any relevance to them.

[Lucy]

Edit/apology

Rebecca, I was thinking exactly of the amniotic membrane transplants that were written about so brightly a few years ago. I threw some water on those flames, too. People were excited and I personally know a couple who took the trip, the surgery, paid dearly and were not helped. I was not one of them. As you remark: people just do not come up and say how very much they were helped by this two years later. I have the same feeling.

I re-read my post and changed one or two sentences after reading your comments. My edit did not change my post, or my reason for writing. I now realize the wording was not very nice and was too personal. I'm apologizing here, hopefully, without drawing a lot of attention to it.

People do need to remember some will be disappointed after. Will they, personally, be the one who will be disappointed? They need to consider this possibility and my post and yours will remind them of this.

[green eyes2]

I have read on the Boston Foundation website that these lenses have a 90+% chance of helping people with severe dry eyes or dry eye symptoms that are severe (as we all know signs and symptoms don't always match). Please tell me this success rate is accurate. From the above post by Lucy, it makes it sound not likely to help as many people as they state.

I’m definitely willing to take a 10% or less chance that the lenses may not work for me because I have so much to gain if they do. I’m not averse to traveling for medical treatment or spending money on this chance to change my life, my husband’s life, and my children’s lives for the better. It’s a chance I’m willing to take since there is nothing else that can help me. My husband and I took a big chance and spent a lot of money and traveled out of state for fertility treatments due to male fertility issues. At least from that I know my hormones are normal and that is not the cause of my dry eye. We spent way more than I’d spend on a pair of scleral lenses. After many disappointments we had what we consider a great outcome, though some may not consider triplets so great..lol..but WE do!

What some people consider a great outcome others may not. Reduction in pain enough for me to be able to read stories to my children on a daily basis and take them to the zoo, park, mall, etc. without being miserable and in severe pain would be a great outcome to me. I’ve suffered with some degree of dry eye since I was 19 and am now in my late 30s. I had to take disability from a prior job because of my eye pain and blurred vision, so I’m not your run-of-the-mill dry eyes. I never even heard about scleral lenses until I joined this website. No doctor ever mentioned them to me. I’m grateful to be made aware of this and have hope for the first time in a long time.

[Rebecca Petris]

Please tell me this success rate is accurate.

At a world class nonprofit facility like that, you may rest assured that any numbers they publish, they publish from a sound, scientific basis - both from documented medical results and from the surveys they take (as Erik described) of patients before and quite some time after they are fitted.

I know, or know of, patients who have not succeeded (both at BFS and who got their sclerals from other practitioners). There are of course a few who do not complete the fitting process. There are some who simply cannot be helped by it. I know of a couple LASIK patients who did not succeed. I think I can fairly say that LASIK patients in general pose some unusual challenges - it is, I think, rather early to determine how many or which types of LASIK patients will ultimately benefit, since relatively few have been fitted. Then too, there are probably people who seem happy and profess to be happy and who later stop wearing them for reasons that haven't been ascertained.

You certainly sound like you have reasonable expectations to me and I would hate to see someone like you discouraged by hearing of failures that are far more the exception than the rule. I totally understand where you're coming from. For the first couple of years of my daughter's life, I couldn't even see the expression on her face unless I was within a few feet of her. Heck yeah, I'm motivated to wear these lenses.

[Lucy]

From the above post by Lucy, it makes it sound not likely to help as many people as they state.

Not meant to be interpreted that way at all. The only reason I can write with any background knowledge of dry eyes is that I have been pounding the bulletin boards for 7 years looking for help. Again, I must clarify - the Boston Scleral Lens have helped me.

Because I've been on the boards for so long, I've seen a few treatments come and go and they were momentarily being grabbed upon by desperate people. They were also extremely expensive besides being invasive. I personally know one patient who put $8,000 on a credit card to pay for her treatment for one eye. I don't think it worked very well.

Green eyes, please don't put too much thought into my post as being more than a slow and steady-rather than a big bang. I mean it as only a reality check for someone reading this for the first time and being so thrilled, they may not consider the downsides.

I came by my dry eyes through lasik surgery as many others have. We were all surprised by this additional surprise. Some of us are still dealing with it many years later. Rebecca and I are only two. I just want people to be aware of the possible disappointment. No one warned us much about that before we had our surgery. I just want people to be careful and think things through carefully. It is so easy to be ready to give up kids, home, hearth, beauty............I am joking at this point. I am also tired and did not mean for this to go into the night.

I'd say with triplets, you need all the dry eye help you can get. Good luck.

[Erik]

I have to join in...

First and foremost, to Lucy: I take no offense to your comments above. I think one of the great benefits of an online community like this is the freedom of dialogue that can exist, and Rebecca has always allowed a good, factual discussion to take place here, which is a healthy thing as long as people are civil and accurate in their statements. The only reason it took me a while to reply here was that I (strangely) could not get to the DEZ site last night, though I could get everywhere else.

I do want to clarify my statement which Lucy quoted above. I did NOT say that I want to help fence-sitters decide to spend their money/time/both at BFS, but rather I want to give people who are considering the Boston Sclerals option enough info so that they can make an educated choice in either direction.

I do think that Lucy makes a lot of good points here, especially regarding the "leap" that desperate people sometimes make to a costly, invasive procedure that can make things worse. One of the reasons I chose the Boston Sclerals option is because it is not an invasive (or perhaps a minimally invasive) treatment, and can be "undone" as easily as popping the lens out, if it does not work. To quote Rebecca above:

Many people who are facing surgery for a variety of eye disease have no idea that they might be able to get a non-surgical, low-risk solution.

Bingo.

On a more personal note, as a cancer specialist, I have seen a lot of desperate people who, after being told an unhappy-but-certain truth about their prognosis, fall prey to some unscrupulous, untested, "theoretical" treatment which robs them of their money or (even worse), their remaining quality-of-life. In my opinion, NO medical decision should be made out of desperation.

Regarding any "embellishment"--one of my reasons for writing day-by-day, is that this disallows my feeble brain from filling in any details that I may have forgotten, and, I hope, keeps me honest.

One final point, which is somewhat ironic to me: Lucy it was actually your post that helped me make the decision to come here, as I have explained elsewhere. I appreciate your honesty on this board, and you have a lot of credibility when you say that a treatment has helped you. I promise the same thing with regards to my discussion of the sclerals and how they have helped me. (You may remember my thread on the rebamipide drops, which, for me, were a bust...)

[Lucy]

I really think we are all pretty much in agreement. I started to post on Erik's thread and decided not to deposit my thoughts there, but to make it a seperate subject. This way, my comments are not smack dab in the middle of his narrative.

Not all reading this know of the desperation we face. They know of the desperation THEY face. Most do not know the history some of many of us. We have been disappointed many times over. Hopefully, from those who have been around the block some important things will have been learned. We saw so much about the amniotic tissue transplant and it sounded so inticing. You're right, Erik, about the BFS being non-invasive and that's why I went for it.

My hope was to put a reality check in place and say - wait a minute - let's think about this. I was very unsure of myself wanting to give anyone great words of wisdom when I had the experience of going to Boston. I know we are very good about posting positive experiences. I also know people are wary of posting negative experiences......for fear of hurting feelings, bad karma, whatever. I also know that many people personally have contacted me wanting to know more detail. Feeling in any way responsible for their decision to try, or not try the lens was something I was most uncomfortable with. I will read your report, Erik, with anticipation. I'm also glad I already have the lens and do not have to face that decision once again.