Really uspet about my opthalmologist's reaction to mention of scleral lenses

[heyjude0701]

I just got back from my appointment with my regular ophthalmologist who treats my glaucoma and did my cataract surgery several years ago, and has unsuccessfully treated my dry eyes with all the known conservative treatments (plugs, lasering tear ducts closed, Restasis). He knew that I went to the Weill Cornell cornea group to get testosterone drops, which he thought was a bad idea, and he knows that they are not working for me. When I told him today that the cornea specialists at Weill Cornell told me that I am a candidate for PROSE scleral lenses he lost it. He got angry, and told me I shouldn't let them touch my eyes, that my eyes are fine and that scleral lenses are only for people with severe cornea disease. He told me that I will be spending thousands of dollars and risk getting an infection. He said my eyes are fine, I don't need that. I told him (again, as I have said many times) that I am desperate because my eyes are very sensitive to light and on most days I can't drive more than ten or fifteen minutes, can't keep my eyes open long enough to have a conversation with someone in a room with the light on, and I can no longer read more than ten minutes at a time before my vision gets too blurry to continue reading. He insisted that my corneas are fine and that they were crazy to offer me scleral lenses.

Now I don't know what to do. Are scleral lenses dangerous? My ophth is a well-known and well respected ophth surgeon who has written books and journal articles, is on the faculty at one of the teaching hospitals in NYC. I don't know if his strong reaction against scleral lenses is due to his ego, his ignorance of how to treat chronic dry eyes, or if he is right and they really are only for people with severe cornea disease. I don't know if the reason I am so upset is because I trust his judgment and he took away my only hope of getting my life back. I even started thinking, am I exaggerating my dry eye problem? Is he right that the limitations I'm living with now are not so bad? I don't want to damage my eyes further, but I so desperately want to read and drive again, and get some of my activities and community involvement back that I used to love to do.

I'm feeling lost and hopeless right now.
Judy

[sazy123]

Its his ego. I havent got much time to reply right now, someone with scleral lense expericence will chime in. There are many people on here with less severe objective signs of dry eye who wear them successfully. Just read the forum. I would wear them my self if i could tolerate them, i unfortunately couldnt due to inflammed lids. I wouldnt be worried about what he says, more so id worry about if you can actually wear them when you have a trial. If you can tolerate them and they help your symptoms. Great!If you have problems it may be the fit or you might be unable to tolerate them. If you take care of them, you should not have any problems with infection...

[heyjude0701]

Thanks sazy. You've given me some courage. Judy

[PotatoCakes]

I don't have severe corneal disease and with the help of my serum drops, I don't have damage either (I did prior) but my doctor thought it was fine to explore the idea of PROSE and connected me with a physician at USC. After a preliminary interview to provide various details about the contacts, costs, etc and find out about how dry eye has affected my life and other eye details and having my doctor fax my medical records to USC, I made an appointment and booked a flight. My doctor at USC spent a good deal of time with me, checking out my eyes, fitting me, etc. She was very clear that there was no guarantee but she felt I was a good candidate. They've been great for me. I don't wear them constantly but love them when I do. Yes, my eyes feel tired after wearing them for any length of time and I still have to use eyedrops or film develops on the contacts and they are more uncomfortable but they enable me to do things I haven't been able to in years and quite frankly, based on some of what I've read here, while my eyes are definitely bad, there are people out there with PROSE who have much worse symptoms than I do.

Is it ego? Maybe. It could be ignorance. There's a doctor that posted here a while back who thinks serum drops don't work but, I can tell you that there's an awful lot of us on this site who consider them a life changer. Your doctor may feel that PROSE is too expensive, and they are expensive, particularly if your insurance isn't covering the bulk of your appointments and contacts. He may be well-meaning. Still, IMO, he's doing you a disservice in not allowing you to explore the option. If you are willing to accept their limitations, the expense, the amount of work it takes to adjust to their insertion and use and the possibility that they may not work for you after all of that, who is he to tell you you can't have them? I'd trust a PROSE expert on whether you are a good candidate, not a guy that seems stuck in the old ways. My first doctor was stuck in a rut and the best thing I did for myself was find a new doctor who was more open to exploring new options for me, even if I was the one that brought the options to him.

[DCRdryeye]

Speaking out

Hi Jude, I saw a supposed "dry eye specialist" ophthalmologist who told me both autogolous blood serum and sclerals are NOT for my eyes because they aren't serously diseased at the surface. But we want PAIN relief, who cares if we don't have occular cracks, marks and bumbs!! They are not very compassionate and to be honest, it's not "smart". We need more ophthalmologist to think out of the box and just bloody well try harder for us. So if you don't mind, I am collecting a few stories of those who have experienced Arrogant, rude or dismissive ophthalmologists and ask if you can please make a contribution. The more we get, I will distribute them to the regularity bodies. I'd like to see each patient receive a "feedback" form after a consultion, eg: From 1 to 10 (10 being the worst) how would you rate your experience with Dr. Doe", "Why weren't you satisified with the consultation?"...then you can really go for it. Those forms will be sent to the regulatory bodies for evaulations. So please go to http://www.blockedtearductsurgeryadult.com/?p=91 and write up an account of your experience and frustration. I've only just recently launched the site so we don't have many responses at the moment. It's your choice of course. But it sure would help.

[heyjude0701]

Thank you, PotatoCakes for summing up your experience and posing reasonable explanations for my doctor's response. This helps me a lot, gives me the courage to go ahead and try Prose, even though my ophth is strongly opposed to it. I'll give him a chance to read the literature, and see what he says next week, when he wants me to call him.

DCR, I will consider speaking out but here are my concerns. My ophth is an excellent surgeon, has always been technically competent, thorough, caring and considerate, did my cataract surgery and YAG, patched up a hole in my retina, and successfully treats my glaucoma with laser so I don't have to use the IOP lowering eyedrops that had been irritating my eyes. I have been going to him for about five years now. It is only because of my chronic dry eyes this past year that I have been at odds with him. For the most part he has been willing to go along with my requests, it was the scleral lenses that made him draw his line in the sand. Because he is a competent surgeon, and I know several people with complicated problems for whom he restored their vision, I don't want to do anything to take away from that. I just want him to learn about dry eye and be more open minded. So I'll pursue the Prose option and see how he responds when I continue to work with the Prose team at Weill Cornell. I'll continue to see him for my regular glaucoma check-ups. If Prose works for me, maybe it will make my ophth change his mind and will help future patients. So I will hold off on speaking out. But, if he continues to oppose my attempts to help my dry eye problem in ways he doesn't approve of, then I will contribute to your site. Fair enough? Judy

[heyjude0701]

oh DCR, I just read your link, what a nasty SOB your optht was!!! I would definitely report it if my ophth reacted like that! My ophth's response was not that severe, no cursing, I think mostly it was surprise with an immediate negative response out of ignorance. But I have the kind of doctor-patient relationship with him that I hope to be able to have an effect on him; I think he can change his attitude, so I will give him a chance. If he is willing to learn from my experience then it will help future patients. If he does his research and learns about Prose and that is being used for dry eye even in cases where there is no clinically observed damage to the cornea (by the ophth), then I'll be pleased and won't report him. If he still vehemently against it and gets paternalistic about it, trying to protect me from those other bad guys who just want to make money on my "untreatable" problem, then I'll contribute to your site. He hasn't actually said to me that my dry eye problem is not bad or that it is all in my head, but he asks, is it really that bad? I'd say its more paternalistic than arrogant.

[Nikki]

I think ophthalmologists whom do surgery tend to be very solution-focused -- and, with dry eyes - often there isn't a very good solution. And, many ophthalmologists are ignorant about how sclerals work, low risk of infection with adherence to proper cleaning and wearing guidelines. It may be that he is frustrated that he doesn't have anything he can offer you --

I'd give it a chance to get evaluated at the least at BFS or one of the satellite sites. They help many patients with extreme light sensitivity. The dry eye disease is multi-faceted - an inflammatory disease with comorbid pain factors. I'd give him one of Dr. Rosenthal's papers about corneal pain and also about the benefits of scleral lenses to educate him about both corneal pain and also sclerals.

[heyjude0701]

Thanks, Nikki. I have decided to keep my first appointment with the Prose specialist team at Weill Cornell (it is not until Jan 23) and I will take your advice and give Dr. Rosenthal's research papers to my regular ophthalmologist. If after my ophth has all the info and if the Prose team thinks that the scleral lenses can help me, and if my ophth is still opposed, then I will change ophths. Maybe one of the reasons my ophth is not taking my dry eye symptoms too seriously is because I don't have eye pain; my worst symptom is severe photophobia and a close second is blurry vision after reading or driving for ten minutes. I get occasional burning and feeling like there is sand in my eyes, but it is not constant, and those symptoms can often be alleviated by artificial tears, I can live with that. It is the photophobia and blurry vision that is so limiting, and nothing I have tried so far have gotten rid of the photophobia and blurriness. Moisture chamber polarized sun glasses make it possible for me to extend my driving time, and f.lux has made it possible for me to use the computer again, but I am still limited as to how much I can drive and read. I think that maybe, if the ophth has never himself experienced photophobia, he doesn't understand how disabling it is.

[littlemermaid]

Interesting he thinks you'll risk an infection with a scleral lens. I've had a chat about infection with bandage contact lenses after surgery but why would someone without a post-surgery or damaged cornea risk infection with a PROSE lens? Maybe he doesn't know much about them. Regarding surgeons who throw their toys out of the pram, I understand how you're in two minds. For me, it's not necessarily been a dump. I'm not saying it's good for anyone's health. It's useful to see the other person's point of view. Is he pleased with his handiwork so far? He doesn't seem to understand the problems he can't actually see in the microscope.

[Rebecca Petris]

Ignorance is an issue for sure - and frankly IMO there is no eye specialist on the planet who has a full understanding and appreciation of the potential and role of every single specialized dry eye therapy and palliative treatment. I wouldn't expect that of anyone no matter what their credentials. That's why we have to sometimes spread our care out amongst more than one doctor based on what their specific strong points are.

But the broader issue is just what you said:

he doesn't understand how disabling it is.

Eye doctors do not "get" the pain factor. (Or, in your case, photophobia. Same principle... when a symptom's disabling, it just is.) I think it's great that you are willing to continue trying to educate your doctor and give him more chances. And it's natural to question yourself if your doctor is doing so. But it's not good for you to let it get to the point where he's undermining your confidence in the reality of what you're experiencing, so don't let it go on too long if he continues resisting. It's reasonable for a doctor to resist you pursuing treatments he disagrees with - IF he's got a potentially effective alternative to offer! If he hasn't, time to move on, IMHO.

I don't know if... he is right and they really are only for people with severe cornea disease.

For the most part yes but there are an awful lot of exceptions and those are the ones like you: no severe surface disease signs but disabling symptoms. A lot of doctors who have seen the results understand that sclerals are a medically reasonable way to attempt to address symptoms.

[heyjude0701]

Thanks Rebecca, your post is very helpful and to the point. I value your opinion! Judy

[heyjude0701]

Is he pleased with his handiwork so far? He doesn't seem to understand the problems he can't actually see in the microscope.

Other than the dry eye problem, he is pleased with his handiwork so far, and so am I. Not understanding problems he can't see himself in the microscope (the old signs vs symptoms dichotomy that docs learn in first year med school- I know, I used to teach it as an epidemiologist many years ago!) - you are right on with this!

[Nikki]

other low cost things to try before the PROSE lenses are the FL-41 lenses -- specific rose-colored lenses that block out certain frequencies of light -- there are several optical shops that sell them -- axon optics for one - and, BPI sells that specific tint - though, I don't know if it's as high quality as the Axon glasses.

Nikki

[heyjude0701]

Thanks, Nikki, I'll look into it. Judy