Scleral Lenses

[Lucy]

Paying attention

Wish I had been paying more attention to this thread. I am considering contacting the institute and asking for information. I have one eye that is so incredibly dry that I'm ready to have it taken out. I should say I "think" it is incredibly dry. No doctor can find any "other' reason for a lot of pain. In fact, I think sometimes they do not believe me. I get so bad that I consider going to the emergency room. Then I usually put a gob of Muro or other ointment in my eye and patch it, or tape it shut.

I don't know where to go, or what to do. My vision is not good, but that I can live with if I have to. My pain is so bad tonight, I could climb the wall. If I went to a doctor right now, they'd say "duh, i dunno what could be causing this." Especially after I tell them I'm years post-op lasik and more recently post-cataract surgery in the painful eye. Either my eye is going to explode or the cornea is wearing away. Since it has not exploded yet, I assume it's the cornea. *&^%+$#@ Why can't I get a straight answer? If the scleral lens would work for me, I'd be so thrilled. If anything would work to take the pain away I'd be thankful. Maybe if I take a "whiskey eye bath." I'd have to go get the whiskey and it's after dark. Forget that. Maybe tomorrow.........whiskey poured in an eyecup. Kidding.

I do have some eyewash and I think I'll try that now. Argggggggggggh.

[dianat]

Lucy, I'm so sorry for your pain and frustration. I really am. I so wish we could all graduate off this site...I'd even let you go first.

I think you are correct to be thinking of seeing someone different - even the Boston folks. Just do what it takes. Doesn't somebody HAVE to know how to diagnose you?! This is just not something you can give up on.

Keep the faith. I'll be thinking of you and praying for you.

Diana

[Philipp_from_Germany]

Sclerals

Hello Everybody!

I am new here - just registered. I have been diagnosed with a rather "mild" MGD about a year ago. My TBUT is down to 3-4 secs and until I started using Restasis about 4 month ago my eyelids were constantly inflammed.

Since this January I am wearing Scleral Lenses which I got in England from a company called "Innovative Sclerals" near London. Their optometrist is an excellent and very positive health care professional with years of sclerals lens fitting experience - probably better than every German opthalmologist I have ever been to...

I would love to share my experience with anyone who is or has been wearing sclerals ( or the mini version - which doesn't rellay differ)

Yes I purchased both mini-sclerals as well as full size sclerals.
Spent about $4K total for the actual lenses.
I was warned they probably would not work (contacts in a dry eye with lid issues), but desperate times called for desperate measures...

* How long can you guys actually tolerate sclerals? They are absolutely excellent concerning the dry eye symptons (They do offer 100% relief of that problem) but after 6-7 hrs the pressureon the ocular surface gets so intense that I can hardly tolerate wearing them longer than that time period. Also, I start noticing "halos" after apprx. 4 hrs of wearing them. The optometriststells me not to worry too much about all of this and I know that he has conducted various studies for british university hospitals about scleral lens therapy.

I am looking forward for your input (Please forgive my slightly improper english - it has gone a bit rusty over time and I am out of practice...)

Philipp

[kakinda]

european experience

Hello everyone, Hi Philipp

I am a 30 years old male. Following severe neuralgias (atypical i.e.bilateral and constant) on the trigeminal nerve which started in 1989, I finally underwent a rhizotomy on that nerve (Vth facial or cranial nerve) in
1994.
The immediate consequences were: neurodystrophy (loss of sensitivity) on my left face particularly, desysthesia (?), dry eyes. Limited or no consequences on the right side. A few days after the operation, I lost the epithelium on my left
eye and a neurotrophic keratitis - a specific etiology within the dry eye zone so to speak - evolved into an ulcer which "healed" in depth. After a biopsy of the ulcer in December 1994, it recovered despite a huge scar on the surface of the eye.

During the following 9 years, I only had a few short episodes of keratitis in the same area (particularly on the edges of the scar). However, since July 2003, both my eyes started to suffer increasingly from severe dry eyes
and ulcerations episodes are increasingly more frequent. For the first time the right eye suffered from minor peripheral ulcerations.

2003-2004 were literally hell. But i started using scleral (made in France and the follow-up is done by the only specialised team in the country) and I have notice a great improvement in my symptoms. One limited ulceration so far since.
I have been able to use them for at least 12 hours although my eyes (as you can imagine) are particularly sensitive.

Philip, I would be glad to share some aspects regarding scleral use and related issues in Europe (if you're interested). I suppose you went to see Ken Pullum or someone else at Moorfield. There are two other options in Europe.
So maybe we could discuss that more privately later on... this is already a very long post).
I launched an association for dry eye patients in Europe (but so far mainly in France, Belgium and Portugal) called Keratos...http://keratos.neuf.fr/ (i hope you read some French I haven't had the time to translated it into Eng.)
We are working and researching on sclerals (reimbursement issues, etc), on some more innovative drops, on MGD, on corneal healing (growth factors: NGF, etc) etc...
so you may want to join our efforts from Germany...everyone else is welcome of course. I will probably post a message on European campaign/association on severe dry eyes, or lachrymal dysfunction, corneal healing, etc (so not just Sjögren cases as usually) later on...

We do have to join our efforts here in Europe if we expect to (eventually) achieved something... someday... but if we don't try, no-one else will.

By the way, I'm also using a French formulation of cyclosporine (before sleep), doxycycline and some other stuff as well... along with the lenses. If i had to describe my life currently: is not hell anymore but a milder form of purgatory... but I'm hopefully slowly on the way of redemption so to speak (I still wonder what sin I may have committed would justify this severe dry eye plague anyway!).


Take care,
Kakinda

[lestacio18]

I waer the scleral lens

Hi all! I wear the Boston Scleral lens. And the Price is very accurate. I too was wondering How I'd pay for it. Fortunately my insurance covered it! Thank God! Since I exhausted all the possiblilities for everything else, and this was a "last resort" for me. I have found for it to be helpful. I got my dry eye resulting from Stevens JOhnson Syndrome, is that the case with anyone else? I live in Pennsylvania, so it was about an 8 or 9 hour drive, but worth it.

I wear the lens in just my right eye ,

My eyes are always red,so about 5 minutes after I put it in, my whole eye is white, and opened wider, and feels amazing. I use less drops. Another good thing is that it DOESN'T TOUCH YOUR CORNEA, which many people tens to think, only the artificial tears do. The only unfortunate part is that my EYELIDS get very dry, so thats what i need drops for. I stayed for about a week. They have a very comfortable facility. They have a kitchen with food so you can feel comfortale, and a "quiet room" with couches and a computer hooked up to the internet, What happens is after they get the right fit for you, they have you wear the lens, say 2 hours and then they check you , then 4 hours, and check you again, and then one day you will wear it the whole day, say for 8 hours, so you can hang out there or even go off and do what you'd like for the day. The staff were extremely nice and nothing but helpful. Dr. Rosenthal is wonderful. I have found this to help me

I actually was referred to Dr. Tseng where I had my amniotic membrane transplant on my left eye by Dr. Rosenthal in Boston.

Good luck all!

I'll check back regularly so keep me posted!

thanks!
Lindsay

[Cindy]

Hi all! I wear the Boston Scleral lens. And the Price is very accurate. I too was wondering How I'd pay for it. Fortunately my insurance covered it! Thank God! Since I exhausted all the possiblilities for everything else, and this was a "last resort" for me. I have found for it to be helpful. I got my dry eye resulting from Stevens JOhnson Syndrome, is that the case with anyone else? I live in Pennsylvania, so it was about an 8 or 9 hour drive, but worth it.

Well, bless your heart Lindsay and a warm welcome to you! You've done a fantastic job describing your experiences with amniotic membrane transplant and the Boston Scleral Lens. I know so few people who have had one or the other but noone who has had both the amniotic membrane transplant and the scleral lens! I'm so glad that they both seem to be successful for you so far.

We just hosted our first Dry Eye Zone conference in Tampa and heard a presentation by Mark Cohen about the Boston Scleral Lens so your post is very timely.

Thank you so much for posting here and again, welcome.

[lestacio18]

Thank you so much! It's really great to hear from people who are going through soem of the same things I am. It's a long road but I'll make it!

[atta]

´my problem is also redness

Hi Amy,
I got the same problem as you.
Punctual plugs remove the redness for a short time, in which I got a lot of irritations tears and they keep my eyes moist. Its a sure thing that the redness get away when we got enough tears(even the irriations tears may help).
What you mentioned about the painting on the lenses sound interessting. But I think, if the lenses can cover the whole eye,including the white part, the redness might be removed too.
Recently I think of getting myself colorful lenses for my glass before I get another method. Light brown´... have you ever used them? I'm thinking, which color work the best...better not so dark color