Dr. Gemoules and my first Scleral Lens

[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.

[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!

[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, 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]

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/

[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.