Not fitting well and was expecting more customization - does this make sense?

[Hokucat]

I agree it might be worth it to try EyePrintPro or Dr. Germoules LaserFit in Texas at this point. I believe since those are made to the exact shape of your eyeball, the orientation of how you put them in is super important. I’ve read Dr. G is very caring and responsive to inquiries, including brand new patients. Perhaps e-mail him about your struggles to-date to see if he has been able to help patients who have had similar issues. Also, I believe Rebecca has EPP lenses, her personal experience may be useful on those.

https://laserfitlens.com/

https://www.eyeprintpro.com/patient/

Ltree and diydry, has either of your fitters said you might have a slightly difficult shaped eyeball to fit? My PROSE specialist has a lot of experience fitting sclerals (fitting sclerals all day is what she does). She has referred patients to EPP after the initial consult with her indicates their eyeball shape requires a custom made lenses. She has also told patients they are not candidates for sclerals after the initial consult, so they don’t go through all the fittings unnecessarily.

[diydry]

I understand the frustration... I also have spent probably 35 or more hours when you include travel time (1.5 hour one way... gotta love traffic!). I admire your persistence putting up with 40 appointments.

I think the more efficient way is LaserPrint Pro or one of the manufacturers who work with you to fit a custom lens over the course of one week so you don't have to keep coming back every 2-3 weeks. I might consider that in the future as I don't want to repeat this process. I also agree this process has been challenging and added more stress in some ways.

Yes, my lens manufacturer has dots on their lenses so I do try to look at the orientation. For whatever reason the lens seems to "settle" best at certain orientations but I feel like it can take hours or the lens to actually settle! Again this is all my interpretation, my doctor has not mentioned orientation as significant but I plan to ask her about this next visit.

My goal now is to just keep trying to the lenses. For now I'm determined and will try to tolerate the lenses even if I don't really want to, with hopes that my eyes will adapt over time. Right now it's sort of a pendulum, after 7-8 hours without the lenses my eyes seriously need a break, so I put lenses on, but then after 7-8 hours they need a break from the lenses, so I take them off. Bed time, rinse and repeat.

[ltree]

Hello DIYDry:

I am also asking myself what's next with these lens too. The whole process of "getting the right fit" has been much, much tougher than I thought. At the very beginning, I thought the only tough decision was to decide on biting the bullet to pay for these lenses - CAD2300 all out of my own pocket.

I am actually waiting for another such evaluation appointment right now - every time it takes an 1.5h travelling and around 2 hours waiting plus appointment time. 3.5hX40 appointments, about 70 hours spent on just the appointments for these lenses! These's got to be a much more efficient way than this.

The labs that partnered with my optometrist all work independently, so yes, they are different manufacturers. My dr decided on which labs to work with first based on the likelihood of which would give a good fit. So I was surprised the first 3 did not work out well - they all gave me some form of lid irritation that prevented me from tolerating them for long enough.

About the orientation of the lens. Good job on figuring that out. I didn't notice the fit/suction, I am mostly focused on putting in the various drops into the lens and not spilling and wasting them... Does that mean your lenses have dots on them to identify that? The other labs did have dots on their lenses but not for the current ones right now.

[diydry]

It does help. Thanks for taking the time to respond. There are a lot of overlaps in our cases. My right eye also is tolerable now, in fact I can wear it for 8+ hours without much of a problem. My left eye after 6+ fits is still problematic, and I'm trying to figure out a solution. I also experience uncorrectable blurriness which I assume are problems with light diffraction through the lens.

So what is your next step? Going to keep trying for a better fit or look into another type of lens? When you say you're working with a 3rd lab and 4th lab, do you mean a totally different lens manufacturer? Does this change the quality of the lens material?

One thing I noticed is that if I insert the lens in a certain way or orientation, it does seem to limit the amount of debris that enters. Have you noticed this? Almost like it fits my eye like a glove if I put it in juuuuust the right way. It almost makes a slight popping sound when I put it in this way, like a seal is formed. However I can try to put in my lens 10 times and rarely can I put it in the 'right' way. This is just my observation, my doctor has not specified anything about orientation as long as there are no air bubbles.

I also wonder if an imprint option would have been better in my case....

[ltree]

Hi friends, I’m bumping this and wondering if the original poster has found a solution to the scleral lens problem. I’m also dealing with lens discomfort despite a supposedly good fit after countless hours of visits, and we share similar symptoms and situations. Thanks.

Hello diydry,

Thanks for asking hope you are managing with your conditions.

I currently do not have great news to share but I suppose the experience might be useful to the community.

Despite a ridiculous number of adjustment and evaluation visits in hope of getting scleral lens that would fit and let me see clearly, I am wearing them only about 1 day/week, and only for one eye, and here is why.

After some 20 re-adjustments (and so that's about 40 visits), the comfort level is finally tolerable but for some reason, it cannot be made for me to see properly in them. Whenever I first put them on, my vision is so altered it would take me some 15 minutes to get used to it. It is like wearing super thick glasses - I would not be able to walk right, and would trip over and bump into things.

Then within 20 mins the left lens would blur up. I am told it has to do with the fit, leading to debris accumulating (which for some reason still cannot be compensated after some 3 refits).

As suggested, I would take off the blurry lens, refill and reinsert. Then within 20 mins, it would get blurry again. I simply cannot afford all this time at work to do this all day long, and so that is why I usually wear only the right lens.

My right lens is tolerable to wear most of the day now, thanks to the last lab's model.. However the prescription is not accurate and my efficiency to read is compromised with the lens - I develop software and on days I prefer to be more productive (which is all the time), it is better to go without the lens even if it compromises my dry eye condition.

So, for me, even with this ridiculous money and time investment, it is unfortunately still not working for me.

I am told because of my blepharospasm/photosensitivity, my eyes blink so much it moves the lens around, making it hard to get to the correct prescription - the lens have to sit at a particular spot for the prescription to be correct.

However if looking on the bright side, the fit for my right eye is currently working, with this 4th lab. The previous 3 labs did not manage to make a model that fits without tolerable irritation, but I think the prescription is more spot on.

So what this may mean to you is that you may still have a chance to get a better fit.

In retrospect, to me it looks like we are limited by the existing technology, and the quality and expertise of the labs that manufacture the lens. Whether you get a good fit depends on luck. I am still curious whether that imprint option would have given better results.

Also, to be fair, my optometrist who dealt with this had been professional and patient through all this. She truly cared and did her best to evaluate and communicate with the partnering labs, also being open in explaining to me what is going on.. So that is why I think we are currently limited by what the labs are capable of offering.

Hope this helps and please ask if you have specific questions.

[diydry]

Hi friends, I’m bumping this and wondering if the original poster has found a solution to the scleral lens problem. I’m also dealing with lens discomfort despite a supposedly good fit after countless hours of visits, and we share similar symptoms and situations. Thanks.

[deep_dry_eye]

Thank you dde for the pointers...

I did some quick read up on the PRP and am intrigued there is something even better the the serum tears. I just finished talking to a very helpful pharmacist at Concord Pharmacy. However, she said they are not currently ready to offer PRP, although they are considering how to make it viable for them to do so. She did say PRP is definitely worth seeking and when I have a chance, will look for where I can get them made close enough to my area (Toronto).

Yes -- I know Concord is considering it. Dr Richard Maharaj is supposedly working w them to bring them to GTA. If you do end up finding a place w PRP pls do share notes!

[ltree]

Hi ltree, I just found out Albert Ng (in Scarborough) has IPL (and LipiFlow and LipiView). You might want to give him a visit.

Concord Pharmacy (https://www.concordsp.com/) across from York University can make platelet rich plasma and is supposedly better than autologous serum.

Thank you dde for the pointers...

I did some quick read up on the PRP and am intrigued there is something even better the the serum tears. I just finished talking to a very helpful pharmacist at Concord Pharmacy. However, she said they are not currently ready to offer PRP, although they are considering how to make it viable for them to do so. She did say PRP is definitely worth seeking and when I have a chance, will look for where I can get them made close enough to my area (Toronto).

[deep_dry_eye]

Thanks DDE.. Will add this to my to do list.

Hi ltree, I just found out Albert Ng (in Scarborough) has IPL (and LipiFlow and LipiView). You might want to give him a visit.

Concord Pharmacy (https://www.concordsp.com/) across from York University can make platelet rich plasma and is supposedly better than autologous serum.

[ltree]

Thanks DDE.. Will add this to my to do list.

[deep_dry_eye]

Deep_dry_eye: If you see this, could you tell me which doctors/clinics I go to for more comprehensive tests? Looking forward to some pointers and thanks again.

For Toronto Area, I suggest Herzig Eye Institute (Dr Brandenborg) or seeandbeseeneyecare.com (Dr Patel). Dr Patel has been mentioned several times in this forum before as he was the first DR to offer LipiFlow when he was at the Herzig Eye Institute. Ask for a LipiView scan of your glands.

[farmgirl]

I just want to note Itree, that, like you I went for many, many fittings and waffled on whether or not to pay for the sclerals. In the end I did but sadly I have never been able to wear them for any length of time. One thing that you must be aware of that was a huge learning curve for me is that I was sensitive to everything about them. The saline solution to fill them I became highly sensitive to and had to use non preserved saline in nebulizer dispensing tubes. The cleaners ditto and ended up having to use the new peroxide system. I spent the big bucks but they were just not worth the hassle for what I gained from them so chose carefully in the end. I think that the Dr was kinda annoyed with me and I felt like she thought I was being difficult (even though on the surface she was very nice about it) but honestly it is not easy going through the process, I know exactly what you are talking about.

I do hope that in the end you find some relief with them but honestly, it doesn't sound promising.

[Hokucat]

Hi ltree. Yes, Dr. Rosenthal (referred to in all those articles in your links) is the one who pioneered using lacosimide and other unconventional compounded drops to treat corneal neuralgia, and is the biggest doctor advocate to understanding the pain and helping find relief for this. I think Fitch was in contact directly with Dr. Rosenthal at one point, to try to find where else he could get lacosimide drops or other alternatives, once Leiters closed down.

I don't think Dr. Rosenthal sees patients anymore, but if you are able to use his publications to somehow get lacosimide (or the other two drops) compounded when no one else has recently been able to, a lot of people would definitely be interested. I hope you are successful, and admire your continued determination fighting through this.

[ltree]

Hi Itree
You wrote: ''Honestly I am not too familiar with MG issues - I do not think I have thick secretion although all the drs I asked never gave me a solid answer on my MG status, only one mentioned they were a bit "turgid" and prescribed scrubs and compresses. I do not see breakthrough improvements from those but I keep doing them.''

MGD is often under-diagnosised and it is progressive, if untreated. you could ask dr to show you or print out images of your glands/oil status. Understand these are important so we know available treatments or better home regimens etc. Also make sure dr press/examine glands function - unfortunately, still many doctors do NOT check such important issue.

Thank you for the reminder on MGD, MGD :-)

Surprisingly, I still have not come across a clinic who has that equipment, or a dr who offered to check and report to me on that, after all this time, with two eye clinics that claims to treat dry eye, and other offices - 4 ophthamologists total. At North Toronto Eye clinic for example, the only more sophisticated equipment they ever used on me was to check on my retina.

Deep_dry_eye: If you see this, could you tell me which doctors/clinics I go to for more comprehensive tests? Looking forward to some pointers and thanks again.

[MGD1701]

Hi Itree
You wrote: ''Honestly I am not too familiar with MG issues - I do not think I have thick secretion although all the drs I asked never gave me a solid answer on my MG status, only one mentioned they were a bit "turgid" and prescribed scrubs and compresses. I do not see breakthrough improvements from those but I keep doing them.''

MGD is often under-diagnosised and it is progressive, if untreated. you could ask dr to show you or print out images of your glands/oil status. Understand these are important so we know available treatments or better home regimens etc. Also make sure dr press/examine glands function - unfortunately, still many doctors do NOT check such important issue.