beware of sclerals

[Styx]

See, I wouldn't even say "supplement"; I would say "supplant".

You're right that it's not as simple as looking at a peer-reviewed articles to make a treatment decision (though it's 99% of getting there, even in complex cases), but that's not what I'm arguing. I'm simply pointing out that your physician is incorrect re: sclerals. I would also disagree that it's "understandable that different doctors may take different approaches", but unfortunately, they do.

Medicine is an incomplete science, but that does/should not give your physician a license to ignore science. And I'm not sure how anyone could call medicine an art form. That sounds like someone saying that we can fill the scientific gap with mysticism, when in fact we just need to (and eventually will) fill the gap with more science.

Stick with the peer-reviewed literature, and you're golden. When the peer-reviewed literature doesn't have an answer, tread very, very lightly with your doctor, but this seems like a fairly well-known problem with a well-known set of solutions in the literature.

[Rebecca Petris]

I feel a soap box coming on.

Stick with the peer-reviewed literature, and you're golden. When the peer-reviewed literature doesn't have an answer, tread very, very lightly with your doctor, but this seems like a fairly well-known problem with a well-known set of solutions in the literature.

I have to say I think you are in danger of oversimplifying....

I am an avid reader of peer reviewed medical literature. Some of it is really good. Some of it really sucks. A lot of it, I'll never know for sure because the most important findings sometimes just don't get published. Who funded the study, who writes the paycheck (well, the consulting fees etc) of a lot of people involved is often inextricably connected to what is published. I feel a thrill when I see something that looks like real science, but I have no illusions about most of it being real science.

Take ophthalmology. There's a wide array of peer-reviewed publications. One of them is called the Journal of Refractive Surgery. I have a bee in my bonnet over that one because it's basically a rah-rah publication for the LASIK industry. Every study ends in "X is safe and effective for Y." While dry eye is statistically very, very well known to be the top complication of LASIK, you rarely see dry eye ever even mentioned in that "peer-reviewed" publication. I don't care how many "peers" review it, it's still not science in my opinion when they completely ignore some things that really, really, really matter a lot to patients.

I hope I'm not a PITA - blame it on being in the middle of a move, exhausted, and frustrated, and missing my DEZ community (haven't been around much for the last month or two!!) and needing a little release of tension - going to take up one more point here:

That sounds like someone saying that we can fill the scientific gap with mysticism, when in fact we just need to (and eventually will) fill the gap with more science.

When someone refers to the 'art' of medicine, I feel they are honoring the human factor both in patient and doctor. The path to healing is never identical from one patient to another, and not always a predictable, linear path. It's as complex as we are as humans, physiologically, psychologically, etc.

I think there are certain aspects of dry eye care that SHOULD produce identical answers from doctors - especially diagnostically. And I hear constantly from people who SHOULD NOT have received diametrically opposed treatment recommendations for their condition - situations where some medical opinions were clearly based on poor training, poor attention to the patient, etc. However, I also know many patients who have been to several doctors and when listening to their whole history, I sense that each doctor identified an important component of the problem. The breakdown is often that no one put it all together and no one put them on a path that took into account each element. Sometimes, it was evident from medical records that each doctor saw the same things but communicated only a portion to the patient. Every situation different, and unfortunately the biggest breakdown of all in dry eye care is that corneal specialist ophthalmologists, taken as a body (noting many exceptions), aren't interested in disease.

/soap box

[shanku]

I sense that each doctor identified an important component of the problem. The breakdown is often that no one put it all together and no one put them on a path that took into account each element. Sometimes, it was evident from medical records that each doctor saw the same things but communicated only a portion to the patient. Every situation different, and unfortunately the biggest breakdown of all in dry eye care is that corneal specialist ophthalmologists, taken as a body (noting many exceptions), aren't interested in disease.

/soap box

Rebecca, wonderfully worded & on-the-point vent! This is exactly my experience. I do not have the nuts and bolts to fully understand medical publications on my conditions and make a wise decision. If this is what patient is supposed to do and decide on his/her own course then why do we pay these doctors. An "usual" semi-informed patient resorts to see more docs as they are not getting relief from seeing all the doctor they saw earlier and the patient has become disabled or functionally impaired to do his/her job or perform usual life functions. Researching and reading these medical journal on this condition is almost impossible with little chance drawing any useful conclusions.

This fall my employer provided a new benefit- "Expert Medical Opinion program" administered by Advance Medical where one can mobilize a team of experienced physicians to help get the answers you need to make informed medical decisions. They claim to provide:

• Access to some of the world's best physicians, who can provide advice for your medical situation.
• A confidential, independent second opinion from a physician with expertise in your particular area of need.

This Expert Medical Opinion program can be considered for a confidential second opinion when one have:

• A diagnosis for a serious, complex, or rare condition
• A treatment recommendation involving major surgery
• Any uncertainty about a diagnosis
• Numerous possible treatment options

It sounded too good to be true and supposed to deliver the exact same thing you implied above. Anyway, I signed up for it immediately. They took reports from all doctors I saw and reviewed those. Report comes with disclaimers like they do not take responsibility of one's care just based on the reports they received which should be done by in-person exam & tests and all decisions should be made thereafter etc.

After 3 months of long wait, I received the report which was prepared by an retired Harvard professor and these are his findings:

a) All my present regime is correct
b) Surgery is a reasonable next step
c) However, the use of oxygen permeable scleral contact lenses offers the best prognosis.
d) Eyelash electrolysis and punctal cautery was wrong move in my case; low-grade level of inflammation existing in my case could account for an extra-strong healing response after these mechanical interventions, leading to lid distortion and retraction.
e) Also, combination of rosacea and allergies combine to form an underlying, seething, low-level, chronic state of inflammation

I took this report to my doctor and pointed out the page; he simply said these so-called-experts are no good as they have not done any in-person exam and not familiar with your history; he simply dose not agree that it is safe to try what this expert recommends. So, this report has not yet found its practical purpose. But one thing I decided after reading this opinion is that I should not rush to surgery (an irreversible treatment choice) without more deliberation. But not sure how to do that as I do not understand medical publications well; so, I am connecting with other patients with similar conditions and exploring what treatments they are using or have found benefit in the past.

BTW, I was recently fitted with Boston sclerals after I self referred myself to that BFS clinic. They accepted and fitted me. I want to reserve my opinion on how the lenses are working on my condition as I want to give it more time to settle down. Since I had to self refer myself for these lenses, I think my insurance is going to pass on the entire price tag on my plate.

On a another note: was utterly frustrated when I spent all day this time to see this local cornea doctor - my appointment was at 11; I started at 10 and was there by 10:45; clinic's front desk said doctor is running 2 hr behind, I started waiting...it was a long long wait....my turn came at around 6PM!!!...when I was made to wait in the exam room for 2 hours, I was afraid they may have forgotten me, may overlook and lock the clinic for that night, then I am in another trouble. There were couple of other people who came from other parts of the state with a 3 hr drive for 9 AM appt. and doctor saw them at 3PM. They were saying if we want to see this doctor we should get our lunch and dinner packed, no kidding! I asked if I can come back another day, and this doctor's calendar was full as usual until next 3 months. So, I had no choice if I want to be seen during this quarter. As you can tell, this doc deserves to be in best doctors list in the years to come. Anyway, that's my vent I suppose.

Happy Holidays to you all!

[Jade]

I read the beginning of this thread and remembered an article from the American Journal of Ophthalmology 2000 I had read a couple of months ago. The authors were Rosenthal, Cotter, and Baum. It was a very small study sponsored by BFS. 14 eyes were treated for persistent corneal epithelial defects with gas permeable, fluid reservoir scleral lenses. A drop of steroid and a drop of antibiotic was added to the fluid reservoir before insertion. Over several days 4 of 14 eyes contracted microbial keratitis and that was pointed out as a warning in the conclusion. (Steroids depress the normal immune response to pathogens.) Maybe the doctor who warned you had seen this article or one like it.

[spmcc]

I am an avid reader of peer reviewed medical literature. Some of it is really good. Some of it really sucks. A lot of it, I'll never know for sure because the most important findings sometimes just don't get published. Who funded the study, who writes the paycheck (well, the consulting fees etc) of a lot of people involved is often inextricably connected to what is published. I feel a thrill when I see something that looks like real science, but I have no illusions about most of it being real science.

There's a news article today that reminded me of this thread: Why medical science often gets it wrong

[Hopeful2]

What an excellent article. Makes you really wonder . . . who's vested interests are being protected by a particular study. How many dry eye products out there will one day come out as being of questionable therapeutic value?

Also, products that are natural (non-patenable) are not going to get the funding from drug companies to be part of research studies. . . there is no money to be made here.

IMHO, we are much better off following the least intervention methods . . . moisture chambers (low intervention) over artificial tears (greater intervention when you consider possible adverse reactions to added chemicals).

Thanks for sharing this with us!

[shanku]

I read the beginning of this thread and remembered an article from the American Journal of Ophthalmology 2000 I had read a couple of months ago. The authors were Rosenthal, Cotter, and Baum. It was a very small study sponsored by BFS. 14 eyes were treated for persistent corneal epithelial defects with gas permeable, fluid reservoir scleral lenses. A drop of steroid and a drop of antibiotic was added to the fluid reservoir before insertion. Over several days 4 of 14 eyes contracted microbial keratitis and that was pointed out as a warning in the conclusion. (Steroids depress the normal immune response to pathogens.) Maybe the doctor who warned you had seen this article or one like it.

Thanks a lot for this article pointer. on my search with "steroid" I ended up with following article. Is there some way to get access to read the article as it is subscription based:

Clinical Significance of Microbial Growth on the Surfaces of Silicone Tubes Removed From Dacryocystorhinostomy Patients

Saurabh Kamal, Sonam Angmo Bodh, Ruchi Goel, Sushil Kumar
American Journal of Ophthalmology January 2012 (Vol. 153, Issue 1, Pages 189-190)