Acquiring Scleral Lenses

[Montgumski]

Is there anyone here who knows where to get ahold of these for moderate dry eyes? My Opthalmologist said that I wasn't a candidate for them, but what does he know. My condition sounds very similiar to that of Philip fom Germany's and I would like to give them a try. Currently, the only place I know that fits them is the Boston Foundation for Sight, in Boston.(obviously) And they only fit them to people who have more advanced corneal diseases.

I think I would be kind of bummed out if my only option would be to fly to Great Britain to have a shot at them.

[Lucy]

Have you done a search on Scleral Lens Practitioners? I have the Boston Scleral Lens, which i (obviously) obtained from BFS.

I believe there are others who do fit scleral lens. I'm thinking of a doc in Fla and will post it here if I think of it. Where are you located? I doubt you'll have to fly to Britian to try these. Unless you just want to travel.

[Montgumski]

Thanks for the response

Hi Lucy,

Currently, I live in Pennsylvania, so going to Boston would be ideal. But if I can find a good reputable doctor in Miami (or elsewhere)with experience fitting them that won't turn me away I might go that route.

Thx again

[Lucy]

Thread re: scleral lens

http://www.dryeyezone.com/talk/showt...t=Scleral+Lens



Above is a link to a fairly recent thread about scleral lens. It also has info about a practitioner in the Boston area who trained under the founder of the Boston Foundation for Sight.

[Rebecca Petris]

Is there anyone here who knows where to get ahold of these for moderate dry eyes? My Opthalmologist said that I wasn't a candidate for them, but what does he know. My condition sounds very similiar to that of Philip fom Germany's and I would like to give them a try. Currently, the only place I know that fits them is the Boston Foundation for Sight, in Boston.(obviously) And they only fit them to people who have more advanced corneal diseases.

I think I would be kind of bummed out if my only option would be to fly to Great Britain to have a shot at them.

Montgumski,

Boston Foundation for Sight certainly has state-of-the-art equipment for this process (and they are constantly upgrading it - just acquired a new half-million dollar lathe/milling machine). Their process, and their mission, is pretty unique. There are also several practitioners in other parts of the US (Florida, Boston, Cleveland Clinic) as well as at Moorfields in London who fit some type of scleral lenses, so there are several options.

With respect to BFS and patient criteria, my understanding is that there are no absolute minimum clinical criteria that would rule someone out for a referral. I think that EITHER objective clinical findings OR patient-reported symptoms, if not both, suffice, on a case-by-case basis. One of their most dramatic success stories was a woman who had a high Schirmer, no staining, none of the usual signs of dry eye but basically could not open her eyes due to very extreme photophobia. I think that if your quality of life is greatly disrupted by dry eye, it's likely you would be at least given consideration as a candidate.

For what it's worth, here are my suggestions for you and anyone else who is considering sclerals but whose doctor says it's not appropriate for them:

1) Have you adequately communicated to your doctor the impact dry eye has had on your life? (If you're willing to go to Boston and go through this process, I'm guessing it is significant!) If you want a handy tool with which to do this, try OSDI, a scientifically validated survey which produces a score. (Eye doctors like numbers. )

2) Is your doctor fully aware of the wide range of conditions treated with sclerals? Perhaps you could ask the Foundation to contact your doctor if you think they may not be. Many doctors are under the impression that sclerals are exclusively for conditions like Stevens Johnson syndrome. Extreme cases are certainly those that will benefit the most, but that does not mean that milder cases cannot be considered for treatment. I just came back from exhibiting at a conference in California for ophthalmologists and spent quite a bit of time with the director of BFS who was visited in our booth by many doctors interested in sclerals, and I observed that many doctors simply were not informed of the range of cases treated with sclerals.

[JPiven]

follow up question on sclerals

Dear Rebecca

Thanks for that informative review. I am not very famlilar with 'sclerals' but was impressed that you said they may be considered for anyone with severe impairment as a result of dry eye. Can you please review for me what the downside would be, if any, of this treatment -- other than the cost, which I have heard is considerable. If cost is not a major issue might this treatment be helpful for anyone with moderate to severe dry eye ? Also, how effective could you expect it to be ? For example, could it conceivably eliminate symptoms altogether ?

Thanks very much. I look forward to your reply.

Joe

[Rebecca Petris]

Joe,

I've been learning about sclerals ever since our Feb. event and have found it all very interesting. I'm not technical enough to have a lot of confidence in any summary I could give but I'll try and pull together some more of my thoughts about this based on what I've been absorbing.

Basically the idea of a scleral is a gas permeable, fluid ventilated lens that rests on the "hills" of the sclera, keeping the cornea constantly bathed in fluid, and allowing fluid exchange by liquid pumping in and out through the "valleys" during the blinking process.

The two best-known and most attractive applications for sclerals (in terms of providing the most dramatic benefits) seem to be:

(1) Promoting epithelial healing, for example in cases of recurrent erosions, filaments, etc: In cases where weeks of conventional treatment fails to heal the epithelium, surface healing under a scleral can and will take place within hours or days. I think that an area where in the future we'll see this used more (in addition to disease) is for temporary post surgical use such as promoting healing after PKP.

(2) As a prophylactic device in chronic disease, to prevent deterioration which both erodes quality of life and may eventually threaten corneal health and vision. - SJS, GVHD and neurotrophic corneas are classic examples. Even in this area, many physicians seem to be unaware that use of a scleral could prevent the kind of deterioration leading to corneal melt, PKP etc.

Because of the remarkably high success rates of sclerals with such patients as these two (overlapping) groups, I think there's been a natural progression towards wanting to try to help a third category, the one comprehending probably many of the types of patients that visit Dry Eye Talk, i.e. ocular surface disease severe enough to impact quality of life substantially but where it is perhaps not associated with any progressive systemic or corneal disease and where in many cases there will be poor correlation between patient-reported symptoms and clinical findings. The tough part about this group is establishing who will benefit most - not so much in terms of whose symptoms will be eliminated or vastly improved (it seems clear that this is true in nearly all cases - see bullet point 3 below for exceptions) but in which cases the perceived benefits will be deemed by the patient sufficient to "make it worth it".

Risks: As far as I'm aware the one known risk of sclerals is bacterial keratitis. I think that the few cases of this that they had was after PKP (transplant) and all resolved with topical treatment and the patients continued wearing the lenses.

In terms of limitations / downside for "Group 3":

- As has been mentioned in one or two threads recently, the scleral addresses the cornea and has unprecedented success treating it, BUT there remains the lens/lid interface so a key question for some patients will be whether they have a satisfactory means of lubricating the top lids, or for others with known lid damage or disease there may be additional issues. I know one patient with upper lid damage from punctum plug complications who is probably not a candidate for this reason.
- For some patients, vision (at least at this time). For example, with the LASIK patients who have higher order aberrations, they may not be able to get the vision quality they need from it, though I believe with the new technologies that BFS is in the process of incorporating into their lens design process they expect this to be addressed in the future. I'm not all that clear what all this entails but unlike regular RGPs which rotate, the scleral stays put, so perhaps it is more possible to keep higher order aberration correction in place on the eye (compared to, say, a wavefront-designed RGP or Ophthonix glasses).
- Eye nerve pain that is sub epithelial? I'm not quite sure how to express this accurately but I believe there have been two cases where pain was ultimately attributed to some corneal nerve damage in the stroma and that they were not able to help for that reason.
- Expectations/tradeoffs. Not to pick on the LASIK group but I think it's clear that expectations and attitudes of patients with iatrogenic dry eye are fundamentally different than those who came by it "naturally". Based on purely anecdotal feedback, clearly not everyone is "happy" wearing sclerals. I suppose the safest way to approach this - as with any other treatment, in fact - is to have clearly articulated goals for oneself.

So, getting back to your questions at last:

Can you please review for me what the downside would be, if any, of this treatment -- other than the cost, which I have heard is considerable.

As a nonprofit BFS treats patients regardless of ability to pay. I think that increasingly, insurance is/will be covering cost.

Downside is time, trouble, and travel, and care and maintenance of the lenses. In that sense this is a pretty self-selecting treatment - people who are willing to go through it are usually going to be highly motivated by some kind of disability their condition has imposed.

If cost is not a major issue might this treatment be helpful for anyone with moderate to severe dry eye ?

In theory, absolutely yes. Again it's the time, cost, hassle factor weighed against what patients really want out of it. For someone who is able to maintain their eyes in acceptable condition (i.e. where it is not markedly limiting their quality of life/activities, and is not progressive) with conventional treatments (plugs, drops, MG care, nutritionals, eyewear etc) there's not much point.

Also, how effective could you expect it to be ? For example, could it conceivably eliminate symptoms altogether ?

Yes, I believe so.

[calli66]

In terms of limitations / downside

As for myself, I had surgery on my sclera 20 years ago, and there's a scar/sensitive area there, right where a S lens would have to rest. Maybe the really huge lenses would cover that, I don't know. Judging by the info on the Boston website, I don't I could personally wear the lens in my right eye.

So, your scleras have to be in good shape to wear this lens, I would think.

C66

[Rebecca Petris]

Interesting & very good point! Where is the scarring? I think that typical lens diameter is around 18.5mm but they can go out to around 23mm.

[Montgumski]

Something I've been thinking about...

This might not be feasible but wouldn't it make sense to allow us dry eye sufferers to wear a test sample lens - to test how tolerable and comfortable the lens feels on our sclera and lids? For example, your local eye doctor could take your eye measurements and send them to BFS, and then you could "tryout" a scleral lens that hasn't been adjusted for vision correction/distortion.

The reason I ask is a dry eye zone member by the name of Bmore had mentioned a few months back how he had bought the lenses and didn't have good results.

I'm thinking an approach such as that could save people a considerable amount of time and money,but then again, I have no idea how the fitting process works so it all could be a pipe dream.

[calli66]

Where is the scarring? I think that typical lens diameter is around 18.5mm but they can go out to around 23mm.

The scar is just outside the iris/cornea part by about 2-4 mm (toward the "outside" of eye, not the "nose" side). Diameters I can't guess. But I saw some photos (on some of the scleral lens websites) and thought, "Whoa, that could hurt!" That part of my eye is the first to get irritated under any kind of stress.

There's been so much discussion about these lenses--they do hold out hope for the most desparate conditions. I always wonder how bad my eyes could get, if they're so bad already (I'm 56 years old). I hope that option would be available to me if all else failed.

I am scared sometimes that if I were ever in an accident or unconscious, nobody would know to keep my eyes lubricated, and my corneas would dry up. I wonder if that's possible?

C66

[Silverlady]

Medical Alert

The possiblity of an accident and not having my eyes cared for, is one of the reasons that I wear a MedicAlert Bracelet 24/7. Mine are so dry that they have to have drops or gel before I go to bed and also during the night. They do pretty well this way. But if I forget or for some reason don't wear the nightime goggles, I have to get up repeatedly. I've always worried about a car wreck or something that would leave me unconsious and no one to tell them about my eyes or throat (dry) and they would let my eyes dry out and get damaged as well as strangling me with a tube of some sort that I could't swallow. So this is a very valid point to make. Medical Alert bracelets, necklaces etc. are available for every disease and most can be engraved with whatever you want on them.
Billye

[Rebecca Petris]

This might not be feasible but wouldn't it make sense to allow us dry eye sufferers to wear a test sample lens - to test how tolerable and comfortable the lens feels on our sclera and lids? For example, your local eye doctor could take your eye measurements and send them to BFS, and then you could "tryout" a scleral lens that hasn't been adjusted for vision correction/distortion....

I'm thinking an approach such as that could save people a considerable amount of time and money,but then again, I have no idea how the fitting process works so it all could be a pipe dream.

I'm sorry I didn't notice this before but it's a question that really should be addressed. I think it may be helpful if I explain a bit about the fitting process.

(By the way, I'm a little over 2 weeks into full time wear of sclerals - it's going very well, and I've just been waiting till I get a little time to write up a good explanation of the experience.)

At present, there are basically 2 approaches to scleral fitting. NEITHER is or can be automated to the point that your local eye doctor could simply take measurements and order a lens, although that should be expected someday as better technologies are developed. Today, fitting large gas perms of any kind is very much dependent on the skill of the practitioner.

Approach 1: An optometrist uses a fitting set from the manufacturer to identify a lens that provides the best fit, then overrefracts the patient to determine the prescription, then orders the lens with the appropriate specifications. Sometimes this process has to be repeated several times based on actual experience of the patient once they have had the opportunity to wear the lens for awhile.

There are several optometrists in the US and a few abroad who do this. These include Ed Boshnick in Miami, Janice Cotter in Boston, somebody whose name I always forget at the Cleveland Clinic and a couple of others I believe. Across the pond there is Ken Pullum & team at Moorfields in London.

As with anything there are advantages and disadvantages. Turnaround time from the manufacturer (weeks) make this somewhat impractical for people who do not live within driving distance from the doctor. Customization is limited. But there is no doubt that many people have found this to meet there needs, including one or two on the bulletin board here. From what I have heard the cost is typically around $3,000. Again only hearsay but my understanding is the clinics generally won't bill insurers but some patients may be able to get insurers to reimburse them.

Approach 2: This is unique to the Boston Foundation for Sight (who have their main clinic near Boston, 3 others in India and will be opening others in the US). They have an extensive fitting set and rely on highly trained staff to determine the parameters for a lens, then the lens is individually lathed for the patient. They make as many lenses as necessary till an acceptable fit is found. This is typically done while the patient stays in the area for up to 10 days. Cost is $8,000. Depending on the case & the insurer, insurance may cover it. Since it is a non-profit foundation, a large percentage of patients have reduced cost or free care with their patient assistance program.

So in both cases, the process is necessarily expensive and inconvenient. These types of lenses were originally developed for eye diseases like keratoconus that leave patients badly disabled visually, and have only more recently been adapted for severe dry eye (cases like Stevens Johnson Syndrome, GVHD etc.) For people who are basically blind, the inconvenience is nothing. It is only very, very recently that interest has been shown in use of these types of lenses for more 'mainstream' severe dry eye. In my opinion, with present technology & availability, there are only going to be a limited number of severe dry eye cases where patients are willing to accept the tradeoffs in order to get into the lenses. However, I think that the future holds a great deal for us. I know that BFS for example are always investigating new technologies and I don't think the day is too far off when they will have imaging technologies that permit trained optometrists in 'satellite' (local) offices to scan eyes and order lenses for patients.

Hope this helps. And yes I'll post about my own sclerals experiences to date as soon as I can.

[postrkdryeye]

I just went to Dr. Gemoules in Texas. I have had sclerals fit in several places; most have been discussed on the forum. Dr.G's lenses are fit with a greater level of precision because he uses very updated technology and a fitting process he invented. So you avoid using all the test pairs and the trial process is easier than elsewhere. He uses wave front technology, which others are not using. He works patiently with you and listens to your comments on the fit. He also charged much, much less than other places. I am still stunned at the $30K I read about on this thread. I understand BSF now charges $10 for their lenses. With Dr. G, the lenses cost $3500 - which includes all the remakes. He also has a discounted, very nice hotel nearby with a convenient, free shuttle. Dr. G also communicates with you by email to answer all your questions. I hope you will consider him when you make your decision to get sclerals.

I rely completely on my lenses because I can no longer see well with glasses. It's been hard because I will never have a problem-free contact lens fit because my eyes produce too much mucus when I wear lenses. Dr.G is working hard to get me as close to problem-free as he can. His willingness to listen and answer have helped reduce the constant stress and fear I live with, which means a lot.

[skygoddess]

I have scleral lenses I received from Emory Optical at Emory hospital in Atlanta. Michael Ward is a optometrist who has a good reputation with dry eye patients. He gave me several options on lens types including layering two lenses. I had to self pay $2,500
Which ironically is exactly what I paid 22 years ago for my RK surgery, which I had, so I would not have to wear contacts .

He has changed lenses 3 times on my left eye, but my corneas are so irregular from my surgery, I bet it would not be so difficult on most patients. RK made actual cuts, 22 on one eye.
It takes a couple of weeks for each lens, but all the changes are included in the price.