Dr. Gemoules and my first Scleral Lens

[pink_ninja]

Hi, just wanted to share my experience on going to see Dr. Gemoules recently. I have a condition called SLK which is painful and causes my eyes to swell microscopically, along with ocular neuropathy following Lasik. This has made my eyes extremely light sensitive and its difficult for me to leave my home, look at computers, or do many of the things that most people can do with ease. I also have Lyme disease which is probably why my Lasik didn't turn out very well. I got Prose lenses 5 years ago through a clinic at UCSF and found them to help both my SLK And Neuropathy, but this past year or two they became uncomfortable to the point that I couldn't wear them. I found out that replacing them would cost 20,000 which was impossible for me, so I researched a little bit online (mostly on this site), and found out about Dr. Gemoules. I was excited because it sounded like his lenses would fit better and would be one fifth of the price of replacing my Prose.

So in March I flew to Dallas and spent 5 days getting fit for my lenses, and I have to say the results have been really wonderful. The first pair of lenses that he had me try on were more comfortable than my Prose and that was just the first pair he made. He made me a total of 5 pairs until he got the most comfortable fit, with a coating that makes it so that I can barely feel them, even when I blink. They are also slightly smaller than my Prose in diameter, which makes them more comfortable and easier to put in.

Overall my experience going to see Dr. Gemoules was wonderful. He is a really kind hearted person, he listened to what I had to say, and he made sure I left with the most comfortable pair of contacts that I possibly could. I am up to wearing them as much as 14 hours a day now, I am able to go outside and enjoy the day in ways I could never before when the sunlight hurt my eyes too much. For the last year or so I was basically a shut in because of my eye conditions, and now I am outside every day sometimes 5 to 7 hours. I can't recommend Dr. Gemoules highly enough and I can't thank him enough for what he did for me.

[PhoenixEyes]

Thanks for the reply. Sorry to hear it was TEN for you too. I know what you mean about the sandpaper rubbing on the cornea. It feels like detergent in my eye, stinging and burning, chronic pain and blurred vision / ghosting. I'm hoping autologous serum will help heal the damage, a recent 2017 study showed good results for TEN patients:
https://www.ncbi.nlm.nih.gov/pubmed/28362052

But if that doesn't work out I may have to consider sclerals, I remember when I used to be scared of eye drops so I guess I'd get used to inserting/removing contacts. You certainly didn't put me off sclerals in general, just gave me something to think about before jumping on a plane abroad.

There are some places on the NHS here in the UK who do sclerals, but not sure of the material or how meticulous they are with fitting, that's also of course if the NHS approves them funding-wise, I'm already costing them a lot! Alternatively I've heard of the private clinic Innovative Sclerals in London, some very positive feedback, one case study of a person with Stevens-Johnson Syndrome who was happy with their sclerals for decades, but also of course mixed reviews for others (e.g. couldn't get a comfortable fit, fogging a lot etc.). I think it is just luck of the draw though!

It's tough since there are those risks if it doesn't fit well or the material isn't as breathable, and the financial risk if you go private. But your experience after getting the perfect fit with Dr. Ward really sounds amazing, I'm so happy to hear a fellow TEN patient get such relief from scleral contact lenses. I hope that something gets me to that level of comfort and vision too, sclerals are definitely on my list of things to try.

By the way I recently joined a helpful Facebook group for SJS / TEN patients:
https://www.facebook.com/groups/21049136206/

[miki-mama]

Hello, Phoenix-Eyes. I, too, had Toxic Epidermal Necrolysis. I sincerely hope that my experience with Dr. G has not discouraged you from seeking help with the scleral lenses. I believe the scleral lenses play an important role in preserving whatever viability I have left in my eyes. They shield my cornea from further damage by the abrasion of the eye lids which act similar to sandpaper on the smooth surface of cornea. I've been told by numerous doctors that my conditions can never be reversed. The only thing I can do is prevent further damage from being done, and maintaining the current state, what ever it takes. The scleral lens is one of those things that prevents further damages o my cornea. I believe the scleral lenses have played a key role in preventing further damage, in my case, possibly from losing sight. As you have stated, it is very important for the lenses to fit well. If they are too tight, or the material used don't allow oxygen to flow they will cause those side affects you describe. I have had all three things on you list happen to my eyes. My eye conditions are being managed by well fitted lenses made of highly gas permeable material. I came upon Dr. Ward purely by chance when I was looking for an optometrist for my sons who are myopic. He had been practicing in my area for many years, making scleral lenses. I just didn't know about him. I mention this as I wonder if there aren't any scleral lens providers in your area, that you are not aware of. I lived briefly in Europe about 6 years ago (Switzerland). I found, through my cornea specialist in Switzerland, an optometrist who was able to fit me with scleral lenses.

[PhoenixEyes]

I really appreciate your update miki-mama. My problems stem from an extension of Stevens-Johnson Syndrome called Toxic Epidermal Necrolysis so I may have to consider scleral lenses someday, but not being a contact lens wearer before I'm apprehensive about insertion/removal, discomfort or damage from an ill-fit, and side effects (corneal neovascularization, corneal edema/swelling, oxygen deprivation), which I see is what led you to get a different fit. I was tempted to consider traveling from UK to America to get the perfect fit, despite my very limited funds, but your experience is very enlightening. I do wish your Dr. Ward was here in UK though, they sound amazing. What's their clinic name? There's always very mixed feedback about scleral fitting in UK but maybe it's the same with every doctor =(

[miki-mama]

Hello. I just saw this request for update from my scleral lens fitting experience with Dr. G. In spite of the great effort by Dr. G, I could not be fitted with the scleral lenses that I was able to tolerate. I had been successfully fitted with, and worn scleral lenses (by a number of providers, including BFS) for over 14 years before going to Dr. G. I went to see him primarily because I was hoping to get a better vision, particularly my night vision. Both the day and night time vision with Dr. G's lenses were noticeably sharper than with any other scleral lenses I had previously worn. Unfortunately, even after multiple tries, Dr. G. was not able to fit me with a pair which I could tolerate for longer than a couple of hours. My thought on this is, expecting to get fitted with perfectly fitting scleral lenses over a week's time is an overreach. Dr. G was kind enough to continue to try to fit me with better fitting lenses, sending me two extra pairs after I returned home. But none of them fit comfortably. I resorted to wearing my old pair of lenses. Upon returning home, I found a local optometrist who fits scleral lenses. I went to see him originally, hoping he would be able to help Dr. G produce the lenses I could tolerate. This local doctor, Dr. Ward, is one of the most meticulous lens practitioner I have ever worked with. He has been able to fit me with perfectly comfortable pair of scleral lenses. I can wear my current lenses for 14-16 hours per day. The vision with my new lenses are also better than any other I've worn. My night vision has improved, although it is still distorted, and I get the starbursts with my current lenses. But during the day, especially when I am having a "good-eye day", I can see as well as 20/15! I think the moral of my story is, that it takes more time to be fitted with comfortable lenses than a week or two. Ideally, one would find a local provider to work with, so that if there are any issues, the patient can easily go back to the provider for adjustments. There are many more practitioners that provide scleral lenses than when I got my first pair 17 years ago. The scleral lenses have become much more common. I would like to advise someone interested in scleral lenses to try to locate a practitioner locally before venturing out to far away places. Failing to find one nearby, I would prepare to invest more than a week or two to be able to get fitted with the comfortable lenses. BTW, I have severely dry eyes with schirmer test result 0 in both eyes due to Stevens-Johnson Syndrome. I have no eye pain or discomfort in my eyes while wearing my scleral lenses. Once I remove them, the pain from the upper lids rubbing on my dry cornea is unbearable. So you can say that I rely heavily on my lenses! Take care!

[theidealist]

Hi, I'm really interested to get scleral lens if my E-eye treatment won't be successful.

My eyes would normally get red in the corner near the nose bridge. When I start to feel my eyes get scratchy, I can already bet that the corner of my eyes would be a bit red.

With that, I wonder if scleral lens would work for me given that it would still have the corner of our eyes exposed.

I'd appreciate your thoughts on this.

[Phlier]

Andre Pereira, tealeaf, miki-mama, any update on your trip to Dr Gemoules ? i also have the High order abberation (glare halos) after lasik. been emailing back and forth with Dr G. has been very nice and informative but still unsure becouse the trip is half of the world. very far. any update will be greatly appreciated. thanks guys.

I, too, would love to hear an update from you guys/gals. I have read all 12 pages of this thread, and I'm very much appreciative of the information you all have shared. Andre did kinda leave us hanging, though. ; )

I am post LASIK X2, and am also post cataract surgery in both eyes. Prior to the cataract surgery (I'm one week post-op on the right eye, and just one day on the left), my surgeon told me that my eyes were most likely too dry to wear soft contacts. RGP's are off the table, as I wore those years ago, and refuse to go through that nightmare again.

So now I'm investigating sclerals for the purpose of treating dry eyes, as well as intermediate and near vision correction. I sent off an initial inquiry to Dr. G just a few minutes ago. I'm hoping to find out how long I'll need to wait after cataract surgery to start the scleral lens fitting process.

L8rgator, thank you so much for the videos! They are very informative.

I'm hoping that a lack of posts in this thread means that all of you are doing well with your Dr. G lenses...

[cemong82]

Andre Pereira, tealeaf, miki-mama, any update on your trip to Dr Gemoules ? i also have the High order abberation (glare halos) after lasik. been emailing back and forth with Dr G. has been very nice and informative but still unsure becouse the trip is half of the world. very far. any update will be greatly appreciated. thanks guys.

[L8rgator]

I use blink rewetting for contacts. I don't really like the other two because my eye doesn't do as well. I also sometimes just use my saline vials for drops. I'm not enthusiastic about Blink. they are not thick at all, so do evaporate quickly. But I haveing found any other options. I want to try blood serum drops someday - it sounds promising.

[alb1967]

L8rgator I have been wearing scelra since Dec 2014 (due to dry eye and irregularies in my cornea from lasik in 2005). They are great but lately my right eye has been getting really dry.
So I think i need to find a good rewetting drop for when it gets dry. Do you use Blink for contacts ? My dr suggested Refresh Optive for sensitive eyes but U cannot find that here in
Louisville Ky anymore. Then he suggested Systane Ultra which is too think. he also suggested Unisil 4 to rewet them. I was wondering how the BLINK drops work for you ?
Thank you Andrea

[Mastiff]

Thanks l8r.

Regarding return visits and continued care, wouldn't you be concerned about the fit of the lenses after several years? In particular, related to ensuring your eyes stay healthy and are not compromised because the lenses get "tight" or something like that. Or do you think you can tell that? There are actually a lot of docs around here who claim to do sclerals. It would seem possible to have one of them at least check annually for obvious issues, though I don't know if they'd be offended. I'm actually in a dilemma now because I just started seeing a doc recently about sclerals (right before I learned about laserfit). She tried hybrids on me first, which are okay but the vision isn't good enough, so next step would be the standard trial lens type scelerals. Funny that with something as important as my vision, I'm worried about the social awkwardness of breaking ties with this person if I go with DrG. I have infinitely more confidence in DrG, but the commitment is much more too.

Did you try regular sclerals before the laserfits? I tried them once a long time ago, but the doc had little experience. They were not comfortable, and hard to get out. I had a red ring on the white of my eye where it got suctioned during removal. So I guess I don't know what's possible with the more old fashioned technology. But then, why mess around with something so important? That's what I keep coming back to. Odds are I'll be heading to Texas soon.

[L8rgator]

>> I'm mostly interested in correcting high astigmatism and some other problems.

These lenses are awesome for that. Nobody else can duplicate the processed used by Dr. G to make those types of corrections.

I was hesitant to let Dr. G put any even basic astigmatism correction into my lenses because every time I got it in glasses I couldn’t wear them. My husband has the same problem. Headaches, and feeling dizzy because of the way everything was warped. Many doctors over decades forced us to try again, but every time we ended up trading in because they wouldn’t work. Apparently this was just for glasses, because after lots of gentle encouragement on my latest trip I finally let him put the correction into my lens on like the 3rd fitting day. Everything was crystal clear. My frequent headaches have actually gotten noticeably less severe. And honestly now without my lenses I feel blind. I seriously don’t know how I managed with glasses for so long. I felt quite wasteful and guilty getting one for my right eye (which has NO moisture problems whatsoever), but I can’t get around the fact that for me it was totally worth it to see so clearly.

>>I've been in touch with DrG and he thinks I'm a decent candidate.

He would definitely tell you if you weren't. He doesn't sugar coat it. He told me the concerns he had for my situation.

>> My questions are (1) what is the "plan" normally regarding return visits?

For me there was no "plan", or suggestions other than see your other doctors for checkups regularly as you did before the lens.

>>Prescriptions change, so the lenses will eventually go stale I think.

This is really a question best answered by Dr G - don't be afraid to ask him. He usually charges for time (so any modification to the design takes computer time and can come with a fee) as well as the cost of the lens. I started out with a non-corrective lens, and then decided to get one a few months later with correction. I went to walmart to get the prescription, and had them fax it to Dr. G. He will make simple prescription changes if you have a doctor locally who will work with you.

An exact duplicate of a lens only incurs the lens fee (and actual shipping charge), so if you damage a lens it's a simple fix.

If for some reason your eye changes shape or you are having other unusual issues, a return trip may be warranted. Unfortunately, it's impossible to predict if that will happen or not. I can say for me knowing what I know now, it was totally worth the risk. But I also totally understand your hesitation because I was in that EXACT same boat right up to the day I got my first lens to wear around town. Maybe ask Dr G how many patients he sees return, and if there are ones what their issues or new needs seem to be??

>>Also, it will be strange to go to my normal glasses doc (for backup glasses or maybe just a checkup) and have to explain the whole situation. How do you handle that?

I find most eye doctors have absolutely no clue what is a scleral is. I bring one of my first day lenses along (the ones that were part of the fitting process that I kept as souveniers) to show them. I gave one to my eye surgeon so he could show his colleagues. So generally they are interested to learn something new. For me they haven't been scared of it, or unwilling to work around it. Just interested, and willing to help. I do have to remind the doctors assistants that I have the lens in and ask if something is appropriate (like if they really want to put fluorescein drops over the lens, or if they want to use a certain piece of equipment with my lens in or out). So I just ask lots more questions than I used to. And I have pretty much memorized my explanation of a scleral now. But that is partially because I had an obvious eye injury so friends and family (and clients, and people at the grocery store and tacobell, etc) ask how it’s doing so I have to do the quick overview summary of how my eye will not heal any more than it has, but how a scleral has changed my world . My advice: learn about the lens on dr g’s site and other sites. Then don’t be afraid to ask Dr. G lots of questions as you get the lens made, because it makes it a lot easier to explain to people (especially doctors) if you know what you are talking about. And if you get a souvenir, mark it with a marker (so you don’t accidentally wear it!) and bring it with you to appointments so people can see and handle it without you having to take yours off.

>>(2) I understand the lenses have to be rotated the right way. Can anyone elaborate? My experience with toric contacts has been terrible; they rotate all over and the vision is horrible if they aren't lined up just right. How do these deal with those problems?

Another question for Dr G, but from my experience these are self-righting and there are no problems with rotating. They are custom fitted to the exact surface of the eye, so they do not want to move at all once in place. and you only need to get it placed in the general direction when inserting them - they self-right to the correct position immediately. If I actually try to rotate mine (just tested with a finger), they really don't want to. Maybe this would be more of a problem if your eye was perfectly symmetrical, but I think that is very unlikely (not an eye doctor, so could be wrong!).

>>Finally, how long did you guys need to stay?
Almost always is 1 week. Complex cases might require adding additional days, but I don't know if I've heard of anyone personally that had to do that yet. I would definitely plan for 5 days. This was one of my biggest worries also. I would not have been able to find coverage for my job for additional days. But Dr. G works very had to get you done right as early as possible. My first trip I was easily done in 4 days and could have bought a plane ticket and left early. But I was really enjoying the time away, so my husband said "no, stay" . This latest time I brought my husband along. We had a lot of fun. Too bad you can't take your family along. It is actually a nice place to visit, with quite a few activities located within like 3-20 miles. But by yourself you can walk to the mall, or go to the aquariums and zoos. Although I hear Texas is pretty hot in summer, so maybe walking isn't a very exciting option this time of year.

Do note- Officially the office is on Wednesdays. They DO bring in their scleral patients to fit lenses. However they DON'T do the first day (all the measurements and scanning) on Wednesdays so plan your trip to start on a different day. You can leave on the 5th day after your appointment, so hotel may only need to be for 4 or 5 total days depending on when you fly in.

[Mastiff]

I'm still working through this thread, but am considering this and had a few questions. I only have moderate dry eye (enough to rule out normal RGP lenses in my dry climate) and I'm mostly interested in correcting high astigmatism and some other problems. I've been in touch with DrG and he thinks I'm a decent candidate. My questions are (1) what is the "plan" normally regarding return visits? Prescriptions change, so the lenses will eventually go stale I think. Also, it will be strange to go to my normal glasses doc (for backup glasses or maybe just a checkup) and have to explain the whole situation. How do you handle that? (2) I understand the lenses have to be rotated the right way. Can anyone elaborate? My experience with toric contacts has been terrible; they rotate all over and the vision is horrible if they aren't lined up just right. How do these deal with those problems? Finally, how long did you guys need to stay? I was really hoping to only miss 5 days of work. Plus killing time in a hotel alone over a weekend would be an extra drag. I'll have to go out there myself because the kids will be in school. Thanks.

[L8rgator]

Not yet. I don't think I should drive after getting that much blood drawn, and haven't been able to find anyone to drive me when the clinics are open (it's quite a long drive, and quite limited available hours). And actually my eyes have been doing terrific with my sclerals with this weather, so I haven't really thought about it in a while.

[Gerri55455]

L8rgator: glad to see things have worked out well for you with the lenses. I still haven't tried the lenses. 50/50 serum has worked fine for me. I first traveled to UIC in November 2014. Then again in April 2015. I will be going back again because my eyes do feel better when I'm on the serum. Have you tried serum yet?