Just got back from Boston, so here goes... don't have much time to post, so this is going to be rather random...
Their PROSE lenses definitely aren't a slam dunk for me, BUT, I think they'll be helpful. They make using the computer feel almost normal to me - I don't have to use Workrave to remind me to blink every 15 seconds as before - if I'm wearing my sclerals, I can use the computer for 4-5 hours in a row like a normal person. I still need to use drops on top of the lenses though. (Prior to PROSE, I could use the computer 2 hours at a time, plus needed to stop every 15 seconds for those blink breaks, which was a major nuisance.)
I feel the edges drying out or something if I walk around too much without moisture chambers on... so I'm still wearing moisture chambers most of the time. Also, because of the issue with feeling the edges, I still use drops on top of the lenses to keep that edge sensation at bay.
My first week at BFS was rather awful for me... not the fault of BFS at all. My eyes got totally trashed from the flight over to Boston (I made the mistake of watching an in-flight movie... ruined my eyes...). So I started my week with badly red eyes - my eyes hurt whenever they were open. So, putting the lenses in and out during the trial fitting process did not help matters, and, in fact, made my eyes get even worse once the lenses were out for the day.
The good news from that first week though: even though my eyes felt so sore I didn't even want to keep them open without the PROSE lenses, with the PROSE lenses in, I was way more comfortable (except for the annoying gritty edge sensation) and could even tolerate computer use.
I told them I wanted to go ahead with the remaining fitting process. They did their best to eliminate the edge sensation I was getting, managed to reduce it, but finally hit a dead end - there was nothing else they could do to improve the edge sensation.
I was then referred to Dr. Rosenthal to see if he could help me tolerate the lenses better - they suspected that some of my symptoms were due to neuropathic pain, and that's why my over-sensitive eyes were feeling those edges while more normal eyes would not notice them.
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 Ideally, he'd like me to wear the lenses this way for at least 10 hours per day.
It's still early (I've only been doing this for 6 days now), but with this protocol, I've been able to tolerate the lenses for longer and longer - that annoying, gritty edge sensation is almost gone compared to before.
He also applied near infrared light to my closed lids for 5 minutes a day. The machine is rather expensive ($800), but I told him I'd like to throw everything at this, then once any improvements plateau, I'll see how little I can get away with - soooo, the $800 do-it-yourself machine is ordered and on it's way to me. Once I get it, I'll be using it for 5 minutes for 2 out of 3 days. (he said if you use it less than that you get less efficacy, but if you use it more than that, you also get less efficacy... it seems 2 out of 3 days is the sweet spot).
So, we'll see what happens over the next few months. I'm hoping my tolerance for the lenses continues to improve.
It may not sound like much improvement since I still need drops, still need moisture chambers to block the "wind" from walking around etc... but the PROSE lenses are a slam dunk for me for computer use. Also, it makes driving way more comfortable.
My eyes get really dry when flying, but while wearing the PROSE lenses on the way home from Boston, my eyes were very comfy, and I could even watch an in-flight movie without discomfort.
The longest I've worn the lenses for so far is 13 hours in a row.
The doctors and staff there are wonderful - they are very warm, and they really want to help - can't say enough good things about it.
If you have questions, feel free to post here... more efficient to answer in this thread compared to answering the same thing over and over via PM's to diff. people.