Corneal Topography was NOT used to fit my vaulted Jupiter scleral lenses. ???

[Max]

I asked my optometrist why there is no technical equipment used to measure the corneas for my lenses and she said it makes little difference and she doesn't know of any type of equipment.

Now on the Duke Univ site it notes they fit lenses after an initial consult that includes corneal topography.

http://cms.revoptom.com/handbook/oct02_sec3_6.htm

Any comments? Advice?

Thanx
Max

[Blinks]

Max,

I'm in the process of scleral fittings and have had two rounds of topography and the doctor used optical coherence tomography OCT to make sure the surface of the cornea doesn't touch the lens. He was able to measure the clearance in microns (!) between the eye surface and the inner side of the contact lens. Just amazing. He used the topography (I think) to find the center or visual axis since the corneas are very scarred and rather like the lunar surface due to ongoing recurrent corneal disease. My maps show the apex or visual center to be way off center so I'd expect (not sure though) the topography will indicate where the prescription needs to be in the lens. Will be interested in what others here have to suggest.

I didn't see any information in your profile to indicate the need/reason for the scleral lenses, is it for dry eye exclusively or for astigmatism/visual correction or eye disease? I can't offer advice, other than to keep asking questions here and continue more reading. There's a lot of information here http://www.sclerallens.org/ the Scleral Lens Education Society plus there are lots of scleral lens wearers on this site. Best of luck to you with the fittings. Let us know how it goes.

[Max]

Max,

I'm in the process of scleral fittings and have had two rounds of topography and the doctor used optical coherence tomography OCT to make sure the surface of the cornea doesn't touch the lens. He was able to measure the clearance in microns (!) between the eye surface and the inner side of the contact lens. Just amazing. He used the topography (I think) to find the center or visual axis since the corneas are very scarred and rather like the lunar surface due to ongoing recurrent corneal disease. My maps show the apex or visual center to be way off center so I'd expect (not sure though) the topography will indicate where the prescription needs to be in the lens. Will be interested in what others here have to suggest.

I didn't see any information in your profile to indicate the need/reason for the scleral lenses, is it for dry eye exclusively or for astigmatism/visual correction or eye disease? I can't offer advice, other than to keep asking questions here and continue more reading. There's a lot of information here http://www.sclerallens.org/ the Scleral Lens Education Society plus there are lots of scleral lens wearers on this site. Best of luck to you with the fittings. Let us know how it goes.

Thank you so much for responding.

The Jupiter scleral's were recommended for acute dry eye syndrome and irregular corneas. At one point following Lasik surgery, the surgeon exclaimed that the surface of my corneas looked like steal wool under a microscope. I have been in horrible pain.

I was visually impaired and then developed cataracts. I had very bad astigmatism complicated by myopia and night blindness since I was born. I was a lifetime client of a state Division of Blind and Visually impaired before moving here where there is no support services. Before this time, anything that was to be done to my eyes went by the Dept of the Blind - they even chose my corneal specialist. I'm on my own here and it's been such a different world.

Cataracts set in and my already identified dry eye started getting worse as well. I first went to an ophthalmologist for the dry eye which I was told often gets worse with menopause. The cataracts were identified at that time.

After waiting a good long time the cataracts got worse and I did research and found crystal lenses. I went to the physician who offered crystal lenses and he first cauterized by tear ducts after experimenting with punctal plugs which didn't stay in. Then he said I really should consider Lasik while he was doing the cataract surgery since he could give me close to perfect vision for the first time in my life. I went for it. It was a disaster and did not improve my eyesight. Instead my corneas became horribly abraded and never healed.

I switched doctors back to my original ophthalmologist and he did surgery by tightening up the outer edges of eyes and using a porcine material to deepen my lower lids so I could hold lacriserts. The Lacriserts were abrasive and didn't stay in - they'd pop out and scratch my corneas. My doctor sent me to another opthamologist at Duke Med Center with the intent of getting a serum made. He said we were going to do it but then wouldn't. Instead he suggested Jupiter scleral contact lenses.

When I called Duke to find out how much these were going to cost, I was told it would be around $1500 per eye. I could not do it. My insurance would not cover them.

Back to my ophthalmologist who has been monitoring the bleperitis and corneal abrasion. His group had an associated optometry dept. He told me to talk to them about the cost of Jupiter lenses which I did and the whole thing was $500.

I am now waiting for my fifth revision. But no corneal topography was done and the optometrist doesn't seem to know anything about it. She's (no pun intended) eye-balling the fitting.

Now I'm dealing with cloudy lenses and one loose fitting lens in my left eye. The lenses become cloudy within 2 to 3 hours and have to be removed, cleaned and replaced three to four times a day. I also wear dry eye goggles purchased here which have been a great help. The surface of my corneas is much much less abraded according to my eye doctor. But nobody seems to know anything about dry eye or corneal topography - it's all a mystery here. I imagine if I had been able to afford Duke's internal contact lens referral I might have had an easier time with this.

[Blinks]

Max, I'm so sorry to read about all of your difficulties. Do you have access to another doctor for a second opinion? Not trying to discourage you from your optometry department but sometimes another consult can be helpful and reassuring. Could you go to Duke for the consult?

After five revisions, is it the fit that's a problem (i.e., comfort) or is it visual correction issue, or both? I have no idea how important topography is in connection with the scleral fit. My doctor relies on using Fluorescein dye and the blue light on the slit lamp to look for pooling (fit too loose) or dark areas (fit too tight) in assessing fit on different areas of the lens. Here is another source of information: http://commons.pacificu.edu/cgi/view...3&context=mono Probably wayyy too detailed but may prove helpful.

Good that the corneas are less abraded now. If the cloudiness persists have you read about plasma treatment? Have no idea if that's included in the Jupiter lenses. Mine are from another manufacturer so I'm no help there. Have you tried different wetting solutions? I've read about using Celluvisc with Unisol to try to tame the cloudiness, but it may depend on one's own individual eye "chemistry" as to what may work to solve that issue. It could be there's more protein being produced by your eye.

[Max]

Max, Do you have access to another doctor for a second opinion? Not trying to discourage you from your optometry department but sometimes another consult can be helpful and reassuring. Could you go to Duke for the consult?

After five revisions, is it the fit that's a problem (i.e., comfort) or is it visual correction issue, or both? I have no idea how important topography is in connection with the scleral fit. My doctor relies on using Fluorescein dye and the blue light on the slit lamp to look for pooling (fit too loose) or dark areas (fit too tight) in assessing fit on different areas of the lens. Here is another source of information: http://commons.pacificu.edu/cgi/view...3&context=mono Probably wayy too detailed but may prove helpful.

Good that the corneas are less abraded now. If the cloudiness persists have you read about plasma treatment? Have no idea if that's included in the Jupiter lenses. Mine are from another manufacturer so I'm no help there. Have you tried different wetting solutions? I've read about using Celluvisc with Unisol to try to tame the cloudiness, but it may depend on one's own individual eye "chemistry" as to what may work to solve that issue. It could be there's more protein being produced by your eye.

Very very minor correction is possible now. So this is for comfort due to acute dry eye and erosion of the cornea.

I have had three lenses that were pooling in the left eye and it wasn't completely fitted to the eye. The right eye had tightness issues and the first was painfully tight. She uses Fluorescein dye each visit. Right now my left eye feels wet; I think the lens is still too loose. So she's ordered another lens for the left eye and is communicating with the Jupiter people about what to do about the very quick clouding; mostly in the left eye.

I'm going to ask my ophthalmologist if he can order a corneal topography. And if that doesn't help I guess I'm going to have to go to Duke.

If I still lived in New England I would have tried Boston lenses. But then if I was still living in New England my counselor would never have approved of Lasik surgery for me. When I called and told her, she nearly had a cow.

It's hard when nobody you talk to is up to snuff on this stuff. My ophthalmologist seems as out of it as the optometrist, and I'm convinced I'm her first Jupiter patient.

[Blinks]

Max,
There's some further info on topography and contact lens fitting on the National Keratoconus Foundation site which may be of interest:
http://www.nkcf.org/finding-the-way-with-a-corneal-map/

"Despite all their fancy features, there is one thing that corneal topographers cannot replace: the skill of the contact lens fitter. Corneal maps need to be captured properly, interpreted correctly, and filed carefully for future reference. Otherwise, the benefits of the technology are not passed on to patients. And even after investing the time to gather all this advanced information, lenses must still be evaluated on the eye."

"To achieve success in all these categories, fitters must ultimately watch the lens perform in its dynamic natural environment – on the eye, not on a computer monitor.

"Nevertheless, computerized corneal topographers are gaining favor with contact lens fitters across the country. Topographers provide a clearer picture of the surface shape of the cornea, especially in cases where the cornea is diseased or injured."
(Written by by Patrick B. Goughary, a Fellow member of the Contact Lens Society of America, teaches contact lens fitting at Camden County College in Blackwood, NJ.)

[Max]

Max,
There's some further info on topography and contact lens fitting on the National Keratoconus Foundation site which may be of interest:
http://www.nkcf.org/finding-the-way-with-a-corneal-map/
"Despite all their fancy features, there is one thing that corneal topographers cannot replace: the skill of the contact lens fitter. Corneal maps need to be captured properly, interpreted correctly, and filed carefully for future reference. Otherwise, the benefits of the technology are not passed on to patients. And even after investing the time to gather all this advanced information, lenses must still be evaluated on the eye."

"To achieve success in all these categories, fitters must ultimately watch the lens perform in its dynamic natural environment – on the eye, not on a computer monitor.

"Nevertheless, computerized corneal topographers are gaining favor with contact lens fitters across the country. Topographers provide a clearer picture of the surface shape of the cornea, especially in cases where the cornea is diseased or injured."
(Written by by Patrick B. Goughary, a Fellow member of the Contact Lens Society of America, teaches contact lens fitting at Camden County College in Blackwood, NJ.)

Hi Blinks: Oh boy. I could probably get my opthomologist to order Corneal Topography but if my optometrist doesn't know what the heck to make of it or apply it, it would be useless info.

In retrospect, the about $1500 per eye charged by Duke was probably due to the fact I was going to get an experienced optomitrist plus someone who was technologically savvy.

I don't know whether to both or not. I don't know if this might help my ophthalmologist with info - he doesn't seem all that knowledgeable and doesn't pass on what he finds unless you tie him to a chair and interrogate him.

There doesn't seem to be any cross communication within the practice between the optometrist and the ophthalmologist. The only doctor who was very communicative in that practice was the surgeon who does not do Lasik but did my lid grafts. But he passed me on to this newer young guy.

Do I both pushing for the corneal topography or not? Confused puppy.

[Blinks]

Hi Max, Rebecca has a terrific article on getting good care from one's doctor here: http://dryeyezone.com/encyclopedia/coping101part2.html She talks about goals so in that spirit, here goes.

Trying to zero in on your concern and I may be waaay off base, so please forgive me if this is off track, it sounds like it's a comfort issue with the lenses not a vision issue you're experiencing with these lenses, is that right?

If it's a comfort issue, and that could be caused by poor fit, your goal may be to rule out fit as a cause of the discomfort.

Do you think your referring ophthalmologist would see you again? Could that ophth provide you with a second opinion with your goal on improving comfort?

My eye surgeon was able to evaluate lens fit and isn't in the same practice as my optometrist. If you have good rapport with your ophth, perhaps you could state your comfort issue, and ask for his/her suggestions.

Perhaps you might ask your ophth about a second opinion at Duke --on the comfort issue-- especially if there's no access to topography in that office.

If someone can rule out fit as the cause of the discomfort, that might be the key to the next step. It's possible topography might be needed, but a lot of docs don't like it when their patients try to direct their treatment, especially if the doc is a bit out of their comfort zone and in this case no access to the technology.

Or another option: Maybe an MD/ophth at Duke could be your primary eye doctor for an annual visit since you have a complicated case, and also provide some coordination with your lens fitter?

Just thinking it might be an avenue to pursue for a consult, not for starting over with the lens fitting at $1500 per eye especially since you have a complicated case and are already invested in your current Jupiter lenses.

Of course there's the potential to alienate your lens fitter if communication is difficult so ultimately you have to decide what you are willing to do in terms of saving that relationship and your goals for better comfort. Maybe a frank conversation around a second opinion would be welcomed by your fitter especially if you ask for their recommendation.

If Duke would write a letter to your fitter, as is often done for second opinion evaluations, maybe it could speed the goal of better comfort in the lenses. It's a pickle, but my lens fitter was open to discussion with my eye surgeon and there seems to be respect between optometrists and ophths.

Just some food for thought.

[ixmnr]

While it may seem counter-intuitive, scleral lenses can be fit without corneal topography. The devices are so large compared to "standard" hard lenses, that they do not even rest on the cornea. They actually rest on the sclera(the white part of the eye) so, in many cases they can be fit without topography. The lenses are designed to vault over the corneal surface thus, ******g any surface irregularities. So knowing the shape of the cornea may be a moot point. However, it may take a bit longer to find a good fitting lens without topography. Having said all that, even with topography, fitting sclerals can be challenging to fit. Patients are so accustomed to soft lenses being easily fit, that assume these are easy too.

It is not uncommon that sclerals in dry eyes can film up throughout the day and need to be cleaned multiple times daily. Remember, your eyes are still dry so, hopefully you still lubricate your eyes religiously while wearing the lenses. Your cleaning and care regimen can make a difference. Bring your concerns to your fitting doctor and they can suggest alternative care systems which may improve some of your issues.

Hope this helps.

ixmnr

[Max]

Good to know. Thanks. I'm bring it up.

[Max]

Important question.

I asked my opticiam if we could do a corneal topography. She said she already did it on first visit but I have only been given an eye test and then told to sit for 15 mins to see how I reacted to test lenses.

Would I know if a corneal topography had been done?

What is the experience of people who have had it done? What was the test like.

I'm on my sixth try and the last lenses pooled and in one eye the flourocine (sp?) sat in the center of the lens and never reached the out perimeter. The other eye is still lose and the lens falls down to the inner lower quadrant so I can't see through it.

Again she called into the company. I may be expecting to much but I hoped for some technical fitting rather than just verbal, very non technical info over the phone.

I asked for a copy of the corneal topography but was kind of ignored.

I am not a difficult patient but I need communication.

[Rebecca Petris]

If she said a topography was done I'm sure it was. The test is not a big deal and unless you asked or they made a point of talking about it a lot it wouldn't be memorable. If you want a copy you can get it... I'd call or stop by and ask the receptionist for it. I would not expect them to do it immediately, and they do have the right to charge a small amount, but they can't refuse a request for your medical records.

I'm sorry the fitting isn't going better. This kind of thing is not easy. -Poor communication isn't uncommon unfortunately... it can sometimes take a lot of extra effort to remedy it, making lists of questions, even faxing them your questions, and speaking up about your need for better communication.

[Max]

Thank you so much Rebecca.

My husband sits in on my exams and he noticed she gets defensive about the silliest things. She is obviously annoyed that we're on our sixth try.

She said that she was going to ask the company to come in for a special fitting. Then later said that while other companies do send in representatives for difficult fittings, Visionary Optics, doesn't have that service.

My husband said that if he wasn't there he wouldn't believe how uncommunicative she is and that he notices weird mood shifts as if she knows it's not my fault and that she should be courteous to a patient and then some personal quirk takes over and she shifts to saying things like, "well we've given this multiple tries, maybe its time to give up"

My husband noted that it feels as if we're walking eggshells with her and never know what completely innocent info will set her off but she's definitely not used to having to deal with lenses that repeatedly don't test out as appropriate.

The website for the makes of the Jupiters notes that they guarantee that they will solve problems.

[Rebecca Petris]

Sigh. Doesn't sound too promising. I'm glad your husband is there with you... good going. Helps in a lot of ways. Re: the dr's annoyance - I'm sure she's as frustrated as you are that it's not working, but it's too bad she doesn't have better interpersonal skills or experience. Maybe it IS time to move on to someone/somewhere else? I know that's a very hard thing to do when you've invested so much into it, but it kind of sounds like this one has hit the limit of her resources.