How many people are candidates for Sceleral Lenses?

[Vicki In Oregon]

I am getting so desperate. It would be nice to not wear my glasses all the time and even nicer to get relief from the dry eyes. I wonder if my eyes can hanlde GP lenses when I am use to soft before this began. I know I need a prescription from a local doc but how do I know my eyes can handle them before forking over over 7K that i cant even afford now?!?!? I know they custom make them for you. But what if they dont work for you for some reason? Then do you still pay? And how long is the process to get it all done? Do you have to make a trip to Boston more than once? Lastly, Rebecca, I know your vision is 20/60 with the lenses. What is the reason they could not get you 20/20? I know sometimes thye say a persons best vision may not be 20/20 but what are the reasons for this? I think mine may not be be able to get perfect either like i use to be.

[Lucy]

Vicky, you are desperate and grasping at straws (as another poster mentioned). Having scleral lens is not probably something you'd be at the point of getting this early in your treatment.

The short answer is no, you don't get your money back if the lens don't work.
I'm sure this is made clear to each patient. I had to make two trips to Boston prior to getting the lens for fittings. I have had them a year and they have not been working well recently and I will have to go back. Most of these questions are something that no one can answer as each case is different.

I'm not going to write any more about this subject in relation to answering any more questions you have, because I feel you're grasping at straws and things we write to you are not coming across as they should. Perhaps someone else can say it better.

[Rebecca Petris]

Rebecca, I know your vision is 20/60 with the lenses.

No, Vicki, it isn't. My vision is 20/60 or worse WITHOUT sclerals, not with. We already went through this very same question & answer (among many others) in private messaging awhile ago.

Even if you were in a situation to pursue sclerals, you would not be in any danger of spending $7k on it without having any idea whether it would work. BFS is a nonprofit and cannot afford to treat people who can't be helped by their particular treatment, so they screen rigorously including a fitting test to rule out those who clearly cannot be helped.

For the rest, I guess I am feeling much like Lucy at this point. I am very, very sorry that you're suffering but I am not sure any question-answering or experience-sharing I've done has been any help . I wish I knew what would be helpful.

[Reggie]

What's up Vicki,
I visited the Boston Foundation for Sight about 2 months ago, and after the initial fitting, Dr. Rosenthal thought the lenses would not benefit me because I didn't have that "Wow" affect when I first put them on. He had asked if it helped with my photophobia, and I had told him that it was hard for me to tell because one of the trial lenses was very far from my rx, and because my photophobia was not as severe as some of the other patients that he had seen (and I inaccurately labled it a 5 out of 5). With that said, I was sent home and I was left very discouraged because I had felt the lenses might have helped. During the 2.5 hours I was wearing them, they seemed pretty comfortable, and I was able to see well out of the one eye with the closer rx.

After reading some of the experiences of the people on this board, I was filled with the hope that the scleral lenses could work for me. So this week, I wrote a letter to Bill Rosenthal (very nice man), and kindly asked that they re-evaluate my situation. He spoke with the doctors, and guess what. I am heading back down in two weeks!

You do not have to worry about not being able to afford the lenses as each case is individually assessed. Anyone who benefits from them will be able to afford them I guarantee (you can PM me about my situation). Plus, I will be staying with a host family through the Hospitality Homes Program absolutely free. I suggest you give them a call, take a Jet Blue flight down there (dirt cheap), and see if the sclerals could help.

[Vicki In Oregon]

Thanks for your replies. I do grasp at straws if there are no good answers thus far, that's what desperate ppl do, me anyway. I was curious mainly as to whether more ppl have not tried this approach due to the inconvenience and cost, or because few ppl are good candidates. I will do anything to get some relief if I can, even if it means being dirt poor for a loooong time. Life is so short. Rebecca, I am glad you see 20/20 out of the lenses. I guess I need to find out how much longer I need to continue with the restasis before I can get that referral. I have little to lose. Reggie, i am so glad you are trying again. It's so important to have hope. I tend to lose it a lot. Please let us know how it goes. I wish you the best!!!

[green eyes2]

Hi Vicki,

I am going to Boston Foundation next week. I have had dry eyes for a long time and have tried a lot of things. Nothing I have tried helps enough for me to forget about my eyes for even two minutes. I do not have extreme dry eyes like some on here who can't open their eyes. I do not have any mucus or watery eyes. I am not sensitive to light and my vision is 20/15 with glasses, but my eyes burn and bother me to the point of interfering with my life. Last exam, I had a low TBUT of 6. I have lower plugs in my eyes they help some but not enough. I had upper plugs and my eyes were very watery. I think I have a tear quality problem. I am sure I am not worst case scenario, but I am still fairly young and am trying to take care of my two-year-old triplets.

Anyway, I do not think you have to be worst case scenario to consider these lenses. I think if your eyes are interfering with your life so much that you can barely work or function and have tried everything else, then look into it. I think it is up to the Boston Foundation to decide whether or not to take you as a patient. You will need a eye doctor referral, though. Call the BFS and ask to talk to Bill Rosenthal and he can tell you more about the lenses and what you need to do. Like Reggie said they have reduced fees or even free lenses for low-income people and you may even be able to get a free flight on something called Angel flight. There are also hospitality homes you can stay at for free. I was told by Mr. Rosenthal that they do a fitting the first day you get there to make sure you would be a good candidate for the lenses, so you would not pay $7000+ dollars for that. I think it is $200 to $300 for the fitting fee. I cannot say how well the lenses work since I have not gotten them yet, but I will report back when I (hopefully) get them. I know they have a 90% success rate, so the odds are in my favor. I hope to be reporting good news soon.

I forgot to add that the vast majority of eye doctors don't have a clue that the Boston scleral lenses even exist. I know the two eye doctors I was seeing never heard of them. I had to educate my doctor who gave me the referral. That is probably one major reason a lot of people don't get them. I'm sure the cost and travel is another factor, but considering if a person is in so much pain it affects their ability to work or they are unable to work it would negate their cost if it allowed them to return to work and also drastically improve their life.

[Reggie]

To tell you guys the truth, I was able to get in even without a referral. The two doctors I had asked both refused to do so, so I explained this to Bill Rosenthal (in charge of patient affairs) and he said that Canadians have always had this problem. I just sent them a letter explaining my situation, along with all my medical reports, and they accepted me.

[Vicki In Oregon]

I am so happy for you both reggie and green eyes, please let us know how it goes. I wish you both the best of luck and thank you so much for the information! How long did it take to get appts?

[Reggie]

The first time around, it took me about 3 weeks to get an appointment which was about a month away ( almost two months in all). But this time around, as soon as I spoke to Bill, it took two days to get my apt. which was two weeks from that day.

[green eyes2]

If you live close enough to drive and don't need to make any childcare or work arrangements, then you could probably get an appt within two weeks. Of course, you would still need a place to stay unless you lived nearby but they could probably set you up with a hospitality home or you could stay at the Sheraton hotel. I think most people need to make travel, work, and/or childcare arrangements and it usually takes more than two weeks to do all that.

[Vicki In Oregon]

Thank you both. My eyes are worsening daily and Iknow it is not in my head. I cant even work anymore. I am wondering if you have to go twice or if there is a way to travel just once and get it all doen and if so, how long would the stay be. Thank you again!

[Reggie]

You wouldn't have to go back twice. You are given a test fitting to see if you benefit from the lenses, and if you are a good candidate, you are there for the whole week while they make your lenses, and try to find you the perfect fit.