My BFS scleral lens fitting

[patrick]

Hi saag,

I made to the end of your post as well and i even have a bad eye day today due to working long hours this weekend and driving 340 kilometers just to attent to a birthdayparty yesterday.
Your posts are always interesting to read.
I really feel sorry for you,but knowing you from your numerous posts i'm sure you are not going to give up very easily.
I also think that many scleral wearers here can serve you with valuable and useful information.
How about this Bfs? Do you still have contact with them? Is there a contactperson for you who tries to answer your Questions and help you with any problems you may encounter during your first trial period of wearing these type of lenses?
I guess the problems you have are not too uncommon and with a few adjustments or just give things a bit more time are probably very solvable. Hopefully.
Here in the netherlands we surprisingly have a highly reputated scleral lens fitting company to. Such a small country,but we seem to have everything here haha!
However i explored my options to have these kind of lenses prescribed for me,but my optometrist first wants to try something else first. She found out that my eye sight is very good,but i have a certain degree of astigmatism and this can very well cause eye strain that has the same symptoms of classic dry eye.
So next week i have me prescibed a pair of glasses. Glasses?? I had refractive surgery 6 years ago and i end up with glasses. Back to square one i guess. Frankly i don' t give a damn about the glasses at all. I just want to get rid of the pain and agony,like anyone here. I'm 6 years into the dry eye game now and it makes me so very tired.literally....
Saag hang in there, the best of luck and i hope things turn out the best for you.

Best regards, patrick...

[Guest]

Hi Abby and Patrick... thanks for reading... I know it's not easy with gimped eyes...

I am still in contact with Dr Rosenthal from BFS on a weekly basis. I was last in contact with him on Friday, and he wants to hear from me first thing Tues. morning to see how I made out on the weekend with babying my eyes. I think I'd like to just forget about the sclerals for a month or so, let my eyes get back to their pre-Boston "normal" and then assess the situation from there. Bleh.

Oh well... could be worse, right? Because I wore my Wiley X sunglasses at work all weekend, it seems to stimulate conversation with others that have freaky problems too

Anyhow, was speaking with this guy who is close in age to me... was married, had 2 kids... has had tumours his whole life, but I guess benign... but then they turned cancerous... wife left him and took their kids, he ended up on disability... had chemo etc.... was forced back to work by the insurance company sooner than he was ready, and had to go back off work again... somehow along the way, the work disability plan was lost... so now he's dependent on government disability benefits... lost his house... now living in one of the worst areas of the city (crime ridden, full of addicts, gang bangers etc.) since that's all a person can afford when on government disability. Still doesn't have his kids... cancer recently went into remission with the help of more chemo etc, but he has a ton of pain lingering... Anyhow, he didn't look like an addict to me, was clean and put together... so I think odds are his story was true...

So yup... could be worse...

[farmgirl]

Hi Saag: I am a Sjogren's sufferer and have been reading with interest your journey and yes I made it to the bottom of the page. I read with interest that you spend up to 8 hours a day on the computer, I am assuming that is your job. I have to say computers are killer for me (can tolerate 1-2 hours max) and can't help but wonder if you have ever considered a career change, something that might better accommodate your disability.

[Guest]

Well, I only work about 15-20 hours a week these days, and yes, do use the computer at work. Fortunately, my work does not require me to be on the computer for most of my time there.

On the 5 days a week that I'm not at work, I use the computer to work on a pet-project of mine... admittedly it's dumb as all heck to pick a project/hobby that requires the computer, but I was hoping the sclerals would allow me to go all out on this project, hence, pushing my luck by doubling my daily computer use. I've been oh-so-slowly plugging away at this project for the past 4 years, and am hell bent on succeeding... I really enjoy this project, and hard as it is for me to move ahead at such a snail's pace, it would really pain me to give up... I just can't bring myself to do it...

However, it appears I will likely have to go back to my 4 hours per day as I was pre-sclerals (2 sessions of 2 hours each... sometimes 2 sessions of 1 hour plus a 2 hours session) I use work-rave to stop me for a blink break every 15 seconds when using the computer without sclerals, and as long as I take the blink breaks, with 4 hours a day, I do ok (well, not ok like for a normal person, but ok for post-lasik me haha)

[Rebecca Petris]

((((SAAG))))

So sorry to hear this latest. I just wish more people could have the ever-elusive 'slam-dunk from day 1' type solution instead of this 'step forward, step backward, and sideways while we're at it' rigamarole which life so much more frequently doles out. I am glad you're giving your eyes the full break & babying approach - I think that's what I'd be doing or at least trying to. I think of some of my ups and downs over the years. It's all so complicated isn't it. So many variables and unfortunately we simply cannot know, we can only make some educated guesses about possibilities and embrace the most reasonable steps that present themselves. I know for me, while I don't have the kinds of challenges some PROSE wearers have, I still have some esp. the chronic GPC thing in my left eye which took me a long time to intuit how to manage and even now I can't say exactly how, but I just know when I get a certain feeling that it's time to cut back on something. One thing I always have to keep in mind with sclerals is that at the end of the day no matter how great they are for the cornea, no matter how well designed or how good materials made from - they're still a great big hard foreign object in the eye which can bring its own set of issues in certain circumstances.

Hang in there... get better soon... always open mind with the lenses. For some people they're a lifelong daily necessity, for others they come in and out of use as the days, months, seasons & situations dictate.

[hosanna13]

Hi SAAG,

Just came across this thread today and was wondering how you are doing these days. Do you still use your lenses? I hope that your pain has diminished.

Like you, I am also suffering from dry eyes and possible neuropathy in my right eye only after LASIK 10 months ago. I know it hasn't been an year yet, but the recovery process as been sooooo slow and draining. Anyway, I hope things are looking up for you. I always appreciate your positive attitude in your posts.

Well, I only work about 15-20 hours a week these days, and yes, do use the computer at work. Fortunately, my work does not require me to be on the computer for most of my time there.

On the 5 days a week that I'm not at work, I use the computer to work on a pet-project of mine... admittedly it's dumb as all heck to pick a project/hobby that requires the computer, but I was hoping the sclerals would allow me to go all out on this project, hence, pushing my luck by doubling my daily computer use. I've been oh-so-slowly plugging away at this project for the past 4 years, and am hell bent on succeeding... I really enjoy this project, and hard as it is for me to move ahead at such a snail's pace, it would really pain me to give up... I just can't bring myself to do it...

However, it appears I will likely have to go back to my 4 hours per day as I was pre-sclerals (2 sessions of 2 hours each... sometimes 2 sessions of 1 hour plus a 2 hours session) I use work-rave to stop me for a blink break every 15 seconds when using the computer without sclerals, and as long as I take the blink breaks, with 4 hours a day, I do ok (well, not ok like for a normal person, but ok for post-lasik me haha)

[Guest]

Hi Hosanna13,

Nope, not using the sclerals (rather than let them go to waste, I really should turn them into an art project or something... if I painted them, they'd make good googly eyes at the very least ), BUT, things are pretty good these days as far as my eyes are concerned. The visit to BFS definitely wasn't a waste since the treatments that Dr. Rosenthal prescribed for me seem to have helped me leap forwards in terms of what my eyes can handle. I'm still far from normal, BUT, I am managing to do most of the stuff I want to do, when I want to do it, so that's good. Even managing to spend a few hours most days working on my pet project, my website - yippee!! (Granted, it's a really stupid hobby for me to take up given the fact that computer use and dry eyes soooooo don't mix... but I'm pigheaded that way haha I want what I want, and I'll stubbornly keep trying to get it until I pull it off. )

Anyhow, hang in there - as long as you don't give up, odds are you'll figure out either a total fix for your eyes, or at the very least, your eyes will improve enough to become manageable.

[patientpatrick]

((((SAAG))))

One thing I always have to keep in mind with sclerals is that at the end of the day no matter how great they are for the cornea, no matter how well designed or how good materials made from - they're still a great big hard foreign object in the eye which can bring its own set of issues in certain circumstances.

What issues have you experienced Rebecca? I'm considering sclerals but would haven't come to the decision yet about going to BFS. Anyone else have positive or negative effects with their sclerals?

P

[hosanna13]

Hi patrick, have you checked out non-PROSE scelerals? For example, there are more ODs who fit non-PROSE like Jupiters. They're also much cheaper.

[patientpatrick]

I actually haven't. I'm not sure how to go about looking into that. I thought BFS was the only place to get sclerals.

[gichamp]

I have Jupiter sclerals - made from a lab in texas "Essilor Contacts." I too thought they could only be obtained in Boston and then had a chance encouter during an executive physical in Charleston, SC. The only health issue I listed was dry eye and my only rx consisted of everything imaginable for the eyes: Restasis, Doxy, Azasite, Lotemax, etc. The physician said I should see a Dr. Black also at MUSC, he fits special lenses for dry eye and I immediately thought no way can I wear a contact. Long story short, 3 hours later I was in Dr. Black's chair and he told me he had been fitting them for decades. I made a follow-up appointment and he fit me with the first lens he put in my eye. He ordered my size and rx for distance and they arrived about a week later. They have changed my life. I wear them 12-15 hours a day and most days, I do not remove to refill with saline. I still have dry eye, still use Restasis and Doxy, but I can now fly, go to a restaurant, exercise outside and work 10 hours a day on the computer. If you go to the Essilor website they list that they will help you find a doctor. Regarding cost, I was pleasantly surprised that insurance paid all but less than $30 for mine since Dr. Black ordered them as medically necessary. I did order another set because I can't bear the thought of not having them and for those I paid just over $700. Since getting the lenses with Dr. Black, I have now discovered a doctor in my city that fits them also, but I will stick with what I know and I do the two hour drive happily. Good luck.

[MGD666]

Hello SAAG - I read this thread with great interest as I think we must have similar symptoms. I recently tried on a few diagnostic scleral lenses (16.5mm ICD Precision) and had the same discomfort in regard to feeling the lens edges. Obviously, they were not custom fitted, nor were they non-rotational ones, so some of that may be expected, but the doctor who I saw seemed to think that due to the hypersensitivity of my eyes, both cornea and sclera, that I might simply not be be able to tolerate them at all.
I have no such issues as far as feeling any edges when wearing soft contacts (not that I do anymore)... but your experience wearing them did sound eerily similar to mine.

Dr. R. put me on low dose naltrexone drops twice a day (applied when the lenses are out of my eyes). For the lenses themselves, instead of filling them with only Unisol 4, I first put a drop of low dose lacosamide, then 1 drop of low dose ropivacaine (too low to anesthetize the eye, but still enough to calm down my potentially over-active nerves), then 10-12 drops of Unisol. Swirl to mix and insert

Did this seem to significantly help you at all when you were still wearing them? Do you still use any of the three (naltrexone, lacosamide, ropivacaine) even though you are no longer wearing sclerals? Anyone else reading this who has successfully used any of the above mentioned drops? Thank you.

[mmc51264]

Great thread! I have a couple of things to share
I have non-Boston sclerals and I actually called Boston b/c my eye doctor here only wants PROSE. When I talked to them, there is nothing special about the Boston lenses themselves, they are RGP lenses. It is the PROCESS that is trademarked.
I have an optometrist that fit me perfectly the very first time. There was a learning curve to getting them in and out and I have pretty much got it down.
I ended up allergic (or at least had an adverse reaction to the Clean and Clear), so I just use the Boston Simplus formula solution.
I have my ups and downs, but overall-a great experience with them. With my husband's insurance, I paid a $300 fitting fee and $10.00 for the contacts. I have trouble comprehending how much trouble many people have and am very grateful for my experience.

[mmc51264]

I am a nurse and have no idea the mechanism of why naltrexone would work. It is an opiod antagonist/agonist that we give to people who have taken too much of a narcotic. Or we use it to diminish the narcotic effect of people who itch from them. I will have to do some research-fascinating