My BFS scleral lens fitting

Another Update... bad news this time

So, I was wearing the sclerals for most of my waking hours... I'd put them in about 3 hours after waking up in the morning, and take them out about a 1/2 hour before bedtime. However, I was starting to notice that my worst eye (my left) was feeling more and more uncomfortable when the lenses were out. The bad eye felt great if the lenses were in, but not so hot once the lenses were out.

Plus, my eyes were more red than usual...

So, I was getting worried that maybe the sclerals were making my eyes worse... who knows....

Decided to try going without the sclerals on Friday to see how my eyes were doing. The first day without them was not the greatest... my left eye was soooo sore and felt dry as a bone. This was NOT normal for me pre-Boston. Pre-Boston, although that left eye was my worst, it was mostly comfortable as long as I kept it well lubricated, used moisture chambers etc.

Needless to say, Friday really sucked... my left eye was sore all day long, and when my husband got home from work at 6:30, I spent the rest of the evening icing my eye on and off, keeping them shut, and listening to an audiobook until I went to sleep at 11:30. Bleh. This drastic babying of my eyes was the only thing that made that left eye tolerable. With my eyes open, every blink hurt... with my eyes shut, the left eye still ached something fierce... so icing it on and off was the only relief I could get. The cold felt sooooo good.

By Saturday, the constant ache in my left eye was almost completely gone as long as I didn't read, avoided the computer as much as possible etc. I wore my Wiley X sunglasses at work all afternoon and evening to baby that blasted left eye as much as possible. Did the same thing today at work. Today that left eye still feels dry as a bone, but thank goodness it's not so sore like Friday. My eyes are back to being almost normal looking too. Also, I started using steroid drops at bedtime again on Friday to accelerate the calming down of my eyes.

So... I don't know what to think... it seems most successful scleral wearers find their eyes feel better after removing the lenses compared to how they would have felt if they'd never worn the sclerals at all... yet for me, the best I seem to be is about the same, but the general trend seems to be that wearing the sclerals leaves my eyes MORE irritated than upon removal compared to not wearing them at all.

However, when the lenses are in, although my eyes tend to get redder I think, they FEEL better overall, especially the left eye, which feel freaking awesome with the scleral lens in.

Is it ok to @#%#@%&*$@$##@$???? Sorry. Just had to get that out.

Theories:

1) Since starting to wear the sclerals at the end of February, I've been unable to use Restasis and my serum drops 4 times daily at evenly spaced intervals as I did pre-Boston... maybe my eyes are missing the steady dose of Restasis and serum?

2) I have increased my computer time since starting to wear sclerals - maybe that's my problem? But if the sclerals don't allow me to do more than I could without them, they are not much use to me. Pre-Boston, I'd average 4-5 hours per day on the computer, and my eyes were decent comfort-wise... certainly far from perfect, but tolerable. Post Boston, I was spending as much as 8 hours on the computer in a day, overall I'd say my eyes were more comfortable in the lenses than without, but it seems that my eyes were now WORSE once the lenses were removed compared to how I was pre-Boston... after a few weeks of that, I cut back to 6 hours or so on the computer, and then back to my pre-Boston 4-5 hours, but it didn't help to fix the discomfort I'd have with the lenses removed.

Also, the flight to Boston totally trashed my eyes... maybe it's not the sclerals that are bugging my eyes so much as it's just that they never had a chance to fully recuperate from being trashed on the way to Boston??

So, I'm thinking I'm going to NOT wear the sclerals until my eyes bounce back to their old pre-Boston selves. Once they are good again, I'll give the sclerals one more try... if I still can't get a significant gain in comfort withOUT paying for it once the lenses are removed, then I guess I'll have to frame my sclerals and incorporate them into the decor of my house?? Maybe I could paint them to look like eyeballs and glue them on my front door? They'd be the most expensive eyeball ornaments ever... haha... joking... as if...

Anyhow, sorry for the ramble... just trying to sort this out.... any advice from PROSE wearers?

P.S... just realized how I've rambled on and on here.. sorry about that... if you actually made it to the end of my post with your dry eyes, you ought to get a medal!!

[Reggie]

I'm not sure the new cleaning and storage routine really makes a difference. I just store it in hydrogen peroxide (bought from the dollar store or walmart) after cleaning the lenses with Optimum extra strength cleaner. Great to know the sclerals are working for you though.

[patrick]

Hi saag,

First of all i just want to wish you the best of luck with your sclerals.
I hope all will work out just fine for you. Especially on the long term.

Thank you so much for taking the effort to share your experiences with us.
I read all your post with very much interest and i'm sure many of us here do the same.
The contents of these post contain such a wealth of valuable information.

Please do keep us informed. It is highly appreciated!

Best regards,
Patrick....

Another update... sooner than planned, but someone pm'd me and their inbox is full, so figured rather than "waste" my answer, I'd post it here so they can see it!

"...just wondering if your regimen is allowing u to overcome the "edge" sensation of the scleral?Could u work on a computer now for 3-4 hours iwthout too many problems?"

Yes, with Dr. Rosenthal's treatments the edge sensation is mostly gone. Keep in mind I'm still using moisture chambers and all the other stuff I used pre-sclerals - the main advantage of the sclerals for me are computer use (still using it lots - loving this aspect!), as well as any other activities that are associated with a lowered blink rate.

Had a bit of a set back last week with a lot of burning in my right eye (some in the left also... but mostly the right)... at BFS they tell you that you can disinfect with a bottle of Clear Care brand hydrogen peroxide (h2o2), then use 3 bottles of store-brand h2o2... then go back to a new Clear Care (so you can replace the catalyst) etc. Last week was my first week of using store-brand h2o2... thinking maybe that's my problem... so last night I started a new bottle of Clear Care brand h2o2, replaced the catalyst, and I'll see if my eyes are better again this week.

I can understand the lenses not being as helpful for patients having neuropathy being that neuropthy may be more of the issue than dryness itself. But I wouldn't think that having neuropathy should make the lenses less comfortable to wear because theoretically speaking, shouldn't a well fit scleral lens shield the entire cornea from being touched at all? Wouldn't that actually be ideal for patients with neuropathy? Do the lenses get pushed back and end up touching the cornea when you blink?

Trouble with neuropathy patients, as I understand it, is that the neuropathy can make our nerves overly sensitive to the slightest irritation. While the lenses do not ever contact the cornea, they do rest on the sclera - patients with neuropathy may have neuropathy in the sclera also. A normal person's sclera wouldn't notice the lens resting on it - a neuropathy patient's scleral nerves may be so hypersensitive that they DO feel the lens, and the discomfort can be extremely irritating to them.

So, I assume that if a person only had hypersensitive corneal nerves, but normal scleral nerves, the sclerals may be a slam dunk perfect fix for their problems. But if BOTH the cornea and the sclera are hypersensitive, the PROSE lenses can fix the corneal issue, but the scleral issue could potentially make the whole thing unworkable due to trading in corneal discomfort for waaaay too much scleral discomfort.

Luckily for me, Dr. Rosenthal's medicating of the saline solution inside my PROSE lenses are seeming to resolve my scleral discomfort, plus preventing the rebound irritation I had once the lenses were removed. I'm so grateful to him for helping me to tolerate these lenses better... I soooo want this to work out for me... hoping badly the meds continue to work... while the lenses aren't enough to alleviate all of my eye issues at this point, I'm really enjoying being able to use the computer like a normal person, read to my kids without burning eyes etc...

I wonder how many others who have tried and had no luck with sclerals might have had some neuropathy component to their problems that may have been fixable with Dr. R's treatments... (obviously it won't work for everyone... some at BFS had no luck even WITH Dr. R's treatments... but still, it's worth a try, right?)

[ALK-O'd]

Before I'd gone there, I'd seen on the BFS website somewhere (I think that's where i saw it anyhow) that only 50% of post-lasik patients are able to wear these lenses. While at the clinic, the OD that was fitting the lenses for me said that for someone with suspected neuropathy has only about 50/50 odds of success. (As I understand it, the 50% odd with the LASIK people is precisely because so many of us have neuropathy involvement)

As I understand it, if you have neuropathy, your nerves are waaaay over sensitive and you feel irritation from the lenses that a "normal" patient would never notice.

I can understand the lenses not being as helpful for patients having neuropathy being that neuropthy may be more of the issue than dryness itself. But I wouldn't think that having neuropathy should make the lenses less comfortable to wear because theoretically speaking, shouldn't a well fit scleral lens shield the entire cornea from being touched at all? Wouldn't that actually be ideal for patients with neuropathy? Do the lenses get pushed back and end up touching the cornea when you blink?

At any rate, best of luck with your lenses. I hope you continue to do well. Please keep us posted as the months go by. Lots of folks post how they are doing immediately upon returning from lens fittings but few give feedback on the long term results.

[Reggie]

Hey Saag,
Glad to see that you found some relief with PROSE. I have been a part of Dr. Rosenthal's pain study for the past few years and I am currently using the Fisher-Wallace tDCS device and Naltrexone drops (not much benefit from either but I will continue to use the drops till they are done). Just wanted to say that the bloodshot eyes was normal for me when first removing the lenses and I never had any redness issues at all prior to PROSE. This was something that went away for me after a couple of weeks, as well as the discomfort from the edges of the lenses (although I am someone who never had LASIK). Very interested to know how the infrared light treatment works out for you down the road. Best of luck to you.

Someone pm'd me with this "May i ask,did dr rosenthal have any idea what the success rate is for sclerals in dry eye patients.
In terms of comfort and being able to tolerate them."

Before I'd gone there, I'd seen on the BFS website somewhere (I think that's where i saw it anyhow) that only 50% of post-lasik patients are able to wear these lenses. While at the clinic, the OD that was fitting the lenses for me said that for someone with suspected neuropathy has only about 50/50 odds of success. (As I understand it, the 50% odd with the LASIK people is precisely because so many of us have neuropathy involvement)

As I understand it, if you have neuropathy, your nerves are waaaay over sensitive and you feel irritation from the lenses that a "normal" patient would never notice.

Interestingly, while I was there, I saw several people there who were getting fitted primarily for vision issues - within 4-5 business days, they were all happy as could be with their new lenses, whites of their eyes nice and white, said they couldn't feel the lenses at all etc. Me and the other possible neuropathy patients on the other hand either couldn't tolerate the lenses at all, or the lenses made our eyes way redder and more irritated. Clearly we were responding to the lenses very differently than the non-neuropathy people - it was so obvious to me from this that it was MY EYES that were the problem and NOT the fit (in regards to my feeling the edges, red eyes etc.) (Both my OD that was fitting me and Dr. Rosenthal agreed that the fit was as good as they could make it for those edges that were bugging me)

Also, just wanted to say that IF you go there and you have eyes that are waaaay drier feeling than they should be based on what the docs can see in your eyes, you ought to suspect neuropathy as being potentially involved. IF that is you, I recommend that when you try on the trial lenses, you check out how they perform in all kinds of situations - walking around, computer use, reading, exposure to dry air etc.

For me, when I wore those early trial pairs, the only glimmer of hope that they might help me was that a) they took away that awful eyelid-rubbing-against-my-eyeball sensation every time I blinked and b) I could use the computer without burning and pain without having to use workrave (yes, still needed drops every 15 minutes just like pre-lenses in the beginning though... all because of that annoying edge sensation). Yet my eyes felt like hell after I removed the lenses (not normal for me) and my eyes were super bloodshot compared to normal, and even more so once the lenses were removed.

Anyhow, with Dr. Rosenthal's treatments, I am now wearing the lenses for 13 hours per day, and the only reason I remove them is because I need to get ready for sleep! The whites of my eyes are whiter, my eyes feel like their normal selves when I remove them, and the edge sensation is getting less and less every day - most of the day yesterday, I didn't feel the edges at all. Very cool.

I still wear moisture chambers and use drops on top of the lenses... but it will be interesting to see if that improves or not after a couple of months of using Dr. Rosenthal's treatments. In any case, even if I have to use moisture chambers and drops forever, I'm still glad I have these lenses because they make computer use soooo much better for me, I can read books to my kids without my eyes burning, brush my kids teeth without my eyes burning (errr... don't know why I would blink less when brushing teeth lol... but I guess I must...) etc.

Also, one more thing...

Especially if you have eyes that might be like mine, I suggest that once you get to the point where they get you to try a 6 hour wear time, IF that feels not too bad and they give you the go-ahead, be sure to try wearing them for longer to see what happens while you are still in Boston. For me, the 6 hour wear wasn't too bad so we figured it was pretty good. BUT, by the 7-8 hour mark, that edge sensation was back with a vengeance and I had to remove them. Since I still had a week left in Boston, they were able to try to address this problem for me - obviously getting home with lenses that are only wearable for 6 hours isn't ideal, so it was great to be referred to Dr. Rosenthal for this issue, and as I've said, his treatments seem to be helping me a lot.

[Sammy B.]

Very impressive.....keep us posted....

Can you please share the purpose of the infrared lights? is it for neuropathic pain? Wish you continued improvement. Thanks

What is the near infrared light supposed to do? Is it to treat MGD, or the corneal nerves?

The near infrared light is not for MGD, but for the corneal nerves. They hope it will stimulate the healing of the nerves in the cornea, and if I recall correctly, it can also help with inflammation, which I believe is the goal in my own case.

[shanku]

Thanks for sharing your detailed experience! I also had somewhat similar wearing experience with these lenses - I mean using these lenses with moisture chambers and frequent drops. Initially I had the edge sensation/clouding but not that much these days. But in spite of wearing the lenses my eyes still feel dry needing frequent drops - feels like lenses alone are not enough to keep the whole eye comfortable. And then my left eye has this constant pain(probably neuropathic), as long as I am awake. After lot of experiments, I have isolated that pain gets worse with dryness; wearing moisture chambers along with lenses & drops helps keep the pain in tolerable range and let me somehow pull through with high-stress 8-12 hours computer job.

I tried to experiment over a weekend if I can go on with out the lenses with just moisture chambers and drops(and totally away from computer). On Monday when I went back to the lenses, I felt big relief compared to not wearing them; but in spite of going back to the lenses, white portion of the eye turned red and started burning. So, next day(on Tuesday) discontinued the lenses again to isolate if it was happening from that. But after working all day on computers with out lenses - just moisture chambers, drops every 30 minutes & breaks with eyes relax every 30 minutes, my eyes were burning with pain and very irritated by the end of the day. Next day it was still red, but I decided to go back to the lenses no matter what and continued with drops every 30 minutes along with moisture chambers. After 2 days of this regimen, the symptoms improved for the better & eyes settled down.

Can you please share the purpose of the infrared lights? is it for neuropathic pain? Wish you continued improvement. Thanks

[Hopeful2]

Hi SAAG,

Thank you for sharing your results with all of us! I am sooo glad to hear that BFS was able to offer you several approaches towards making the lenses work for you. 13 hours of wear already. . . wow. . . I really hope your comfort level continues to improve so that you can wear them without having to add drops

What is the near infrared light supposed to do? Is it to treat MGD, or the corneal nerves?

I think your experience can give many of us hope that with the right combination of meds and sclerals, we can find a way to wear sclerals in comfort

Please keep us posted.

[PAllen]

Thank you so much for sharing all this and best of luck.

How easy or hard is it to remove the lenses? Do you use a plunger? My lenses are on reorder. When I first tried them on and was trained o how to remove them, I really struggled. Now I'm really getting worked up while I wait for the new lenses to come in. I'm afraid I won't be able to remove them,that the plunger will end up on the wrong part of the lens, or or my eye, that it'll hurt, etc.

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.