Published on 17-Jan-2011 20:47
Number of Views: 122
“But there certainly are not so many rich men in the world as there are pretty girls to deserve them.” – Jane Austen
The Truly Great Dry Eye Doctor is a bit like Sir Thomas Bertram, isn’t he? There just don’t seem to be enough to go around.
Some few of you have managed to bag one: The doctor who knows an awful lot, is involved in the most current research, is kind and sympathetic, listens well, takes the initiative with finding you new treatments but also likes educated patients and is perfectly willing to discuss ideas you bring to the table. This doctor encourages you to keep an open mind about things you object to yet is willing to be flexible when you have strong opinions for or against a treatment. Even when this doctor can’t understand you, s/he fakes it well. Best of all, this doctor keeps trying and never gives up on you – even when you’re hurting, grumpy, frustrated, reluctant, depressed or anxious.
Believe it or not, dry eye doctors like this really do exist. If you have lucked out with such a paragon, congratulations! Pass the word to the rest of us. And don’t forget to tell your doctor how good s/he is and how important they have been in your dry eye journey!
The majority of us hopeful doctor-shoppers are seeing a doctor in our local community who doesn’t quite measure up to this standard… one whose best assets may be as attractive as intelligence, a willing attitude and current information, or may be as modest as a detectible pulse.
The purpose of this article is to help you find the best you can short of the paragon.
STEP 1. Resolve to be a Truly Great Dry Eye Patient.
"'What's WRONG with the children, Captain?'
'Oh, there's nothing wrong with the children. Only the governesses!'"
(from The Sound of Music: Captain von Trapp speaking of his children's eleven former governesses.)
Like any relationship, that between patient and doctor is a two-way street. Frustration can be mutual.
When you find a new doctor, you want to start off on the best foot possible. Before you go doctor shopping again, PLEASE read my article about how to get better care from your doctor. It’s long, but worth it. Some of you have been through several doctors and it could be devastating for you to experience a rerun of past disappointments. Making just a few strategic changes to your own expectations and behaviors could be an effective safeguard.
STEP 2. Consider both MDs and ODs
Your doctor type choice lies between an optometrist (OD) who happens to take a serious interest in dry eye and an ophthalmologist (MD) whose subspecialty training is in cornea/anterior segment (let’s call them cornea MDs for convenience’s sake) AND who also takes a serious interest in dry eye.
Many people with chronic severe dry eye tend to take it for granted that they must have an ophthalmologist – that an optometrist isn’t “good enough” in their situation. And understandably so, since many of you were referred to your first cornea MD by your OD.
But if you haven’t ever reconsidered a dry eye savvy OD as your dry eye “primary care” doctor, now is a good time to do so. Compared to the average cornea MD, ODs are considerably more likely to actually WANT you in their practice. As one cornea MD said to me a couple of years ago, most cornea MDs don’t actually like treating corneal disease. Some of you remember when I had the Dry Eye Yellow Pages, right? There were lots of MDs I wanted to list there because I knew they were really good at dry eye – but they did not want their names there because they were concerned it would bring too many dry eye patients through their doors. I’m quite serious. And I’m not saying it to be critical – I’m just describing the reality of our situation here. To the mainstream cornea MD, dry eye tends to be a sidebar professionally and something approaching negligible financially unless they are among the slim minority who truly specialize in it. To the mainstream optometrist, dry eye is a little closer to bread & butter. This does not mean you’ll get suboptimal care from the MD just because s/he’d rather be doing surgery. But with an OD may be more available and more interested and, overall, a better day-to-day resource.
So, to get a GOOD doctor, you are looking for either a gem of a cornea MD who likes ocular surface disease, or you are looking for a gem of an OD who is taking maximal advantage of the extensive continuing education dry eye courses available these days. Better yet, look for both. For some, the ideal situation is an OD who’s very serious and up-to-date about dry eye but who is either in a mixed practice with a cornea MD available to consult when needed or who has a good relationship with a good cornea MD at a nearby university.
One last note: Some of you could really benefit from drawing another specialist onto your team. This might be a really good dermatologist (for example if you have really stubborn lid margin disease) or a really good endocrinologist (if your dry eye onset is suspected to have coincided with hormonal changes).
STEP 3. Determine what you want, or rather need, from a new doctor.
“Everything” is not realistic.
“Better”, in the abstract, is not enough. No doctor will be “better” than the last if you can’t articulate what the last was lacking that the next needs to have.
Take some minutes to write down everything you feel your previous doctor(s) lacked. Then put yourself in a budget-making mindset where you know you have to slash some things that you really want. Be ruthless. Pare it down to a list of must-haves and cross off everything which, push come to shove, you can live without. Go back through my lists from the “How to get better care…” article and cross off your list the things that I suggest not to expect. (It’s better to be pleasantly surprised when the new doctor exceeds your expectations than disillusioned when s/he falls short.)
In terms of qualifications, reputation and standing in the profession, I’m not going to give any guidance whatsoever save to keep an open mind. The best doctor on paper is not always the best doctor face to face.
STEP 4. Start looking.
Local support groups.
There are very few dry eye support groups at this time. But if there is a Sjogrens (visit www.sjogrens.org) support group in your area, you can bet the group leader will have the skinny on good local dry eye doctors and may know which are using very new or unusual treatments.
DryEyeTalk is a decent place to start. Look in the Plug-a-Doc forum. Registered members can also post there asking for recommendations. Private messaging is available for those who don't want to make their opinions public. And try other forums like sjogrensworld.org.
If you don't have another source, google names from the phone book (I've resorted to this more than once myself!) and see if they’re publishing much on dry eye, whether in peer-reviewed medical journals or the ‘throwaway’ medical news magazines. I would certainly not use this as an acid test for a doctor that you've had a verbal recommendation about (there are a lot of 'hidden gems' out there that are not prolific in publishing) but it may be helpful in the absence of other sources. This may be particularly helpful for international patients.
“Dry eye clinic”?
Don’t assume that anybody and everybody who hangs a “Dry Eye Center” sign in their window really is a dry eye “specialist”. It might mean nothing more than that they write more Restasis prescriptions or fit more plugs than anybody else in town. There is no such thing as a dry eye specialist per se (officially, I mean) though anyone can self-describe as one. There is also an interesting trend lately for LASIK centers to start describing themselves as dry eye centers. So don’t make assumptions about qualifications.
OSSO (Ocular Surface Society of Optometrists). This is a quite a new organization and it doesn’t have a directory for the public but I think it will be an organization to keep an eye on and even their officer/staff listing may yield some good leads.
ASCRS (American Society of Cataract & Refractive Surgeons). Use this to find cornea MDs in your area. Go to ascrs.org, click on Find a Surgeon, use the zip code locator, and then check each individual practice to see if it says “cornea” under the subspecialty heading.
TFOS (Tear Film and Ocular Surface Society) No directory but if you scour the site including some PDFs from events you will find a lot of good names. International patients, check this PDF: http://www.tearfilm.org/pdfs/TFOS_Abstracts.pdf
Got names? Call the practice for more info.
You want to pin down a cornea MD or an OD who really ‘digs’ dry eye disease or at least who is a really good advocate for their patients. Big ophthalmology practices often have one or more ODs on staff, not just MDs, so don't forget to ask about both. As I have mentioned, sometimes a really good OD in a big mixed practice will be a better resource for your routine visits than the cornea MD in the same practice. S/he may be able to give you more chair time – but at the same time, they have easy access to the cornea MD for consulting as the need arises (and even an oculoplast, which may be helpful in some eyelid cases).
This is no time to be shy. Chat up the receptionist, even ask to speak to a technician. Ask probing questions. Pull out your “must-have” list (#3 above) and tell them what you are looking for. Someone on staff has dry eye… someone will understand! You will often be able to get some sense of whether dry eye really is this doctor’s cup of tea or not and whether this doctor is likely to ever think about anything beyond the most conventional treatments.
FAQ: Why doesn’t DEZ have a directory?
I tried it once. Alas, too many websites and too little time to maintain them. I may try it again someday.
Meantime, you can help others find outstanding doctors by posting names of doctors who have helped you in the Plug-a-Doc forum. No negative reviews allowed, for all the usual obvious reasons.
FAQ: Should I travel to a dry eye specialist?
Maybe. It's helpful in some cases, less so in others.
Look carefully before you leap. The emotional cost of a disappointment when you're traveling to a famed specialist can be even greater than the financial cost.
1) It doesn't solve your long term care needs.
No matter how good a "distance doctor" you find, you still need a good local one.
2) Be realistic about what you stand to gain.
We all know they're not going to wave a magic wand over us, but… it doesn't stop us from subconsciously hoping they will give us fresh new hope.
The things a Dry Eye Guru is most likely to be able to help with include:
- Identifying a condition no one else has noticed.
- Attributing more of your symptom-woes to a known condition that other doctors didn't think was that bad.
- Identifying things you're doing (possibly including things your previous doctors recommended) that may be harming you.
It may not be practical or appropriate for them to put you on a completely new treatment program immediately. Don't be surprised if their recommendations have a lot of overlap with things your previous five doctors have recommended.
3) Beware the pet diagnosis/treatment.
Don't be just another nail for someone's hammer. Doctors treat what they see (clinical signs) as opposed to what you feel (symptoms). What they see in you, no matter how medically legitimate, may or may not be your primary source of symptoms. So exercise caution when presented with an exciting new diagnosis, especially if the recommended treatment is boutique and/or expensive and/or invasive. It might fix an observed problem, but it won't necessarily fix YOUR problem.
4) Beware the confusion factor.
I hope I can put this across in a way that sounds more practical than cynical:
You've had, say, four opinions and you're about to add a fifth. And the reason you think this one will help is what, exactly?
Yes, the new doctor may well be more right than the others. But don't assume you will FEEL certain this is so after your appointment. No matter how well reputed the Dry Eye Guru you choose, the burden will still be on you to decide who to trust. The new doctor may agree with some of the previous doctors or may flatly contradict them all. At the end of the day you have another opinion (hopefully more complete, more accurate and more to the point) and YOU still have to decide what to do with it. If they tell you to stay the course, will you be willing? What if they tell you to change everything? You may find yourself replaying conversations with other doctors whose pronouncements you also trusted at the time of the visit but aren't so sure now. I say this in order to lower expectations to a rational level.
5) Beware the 1-minute-37-second specialist.
So you've found him. He's a teaching doctor, is on the international speaker circuit, has published scores of studies, is on editorial boards of peer-reviewed journals, is involved in new drug clinical trials. Clearly, he's qualified. And also really, really, really busy, between surgery schedules and all these other obligations. My advice? Don't bother, UNLESS the scheduler you speak with can guarantee you're going to have a decent amount of one-on-one time time with the doctor and/or you know from other patients of this doctor that travel-ins do not get shortchanged. If you go, make sure you follow my advice in step 5 (below) so that you can stand out as an interesting, unusual, motivated, educated patient.
STEP 5. Preparing for the first appointment.
"…’Tis good to be off with the old love before you are on with the new." - Various
Get your records from your previous doctor(s). (Don't just authorize the new doctor to get them. Get your own personal copy.) Submit a written request (doesn't have to be fancy), ask if there are any fees, and ask when to expect them. It's good to know what notes your previous doctors have written about you, and also helpful to see your clinical history on paper, because this is what your new doctor is going to see before they meet you.
When you call to make the appointment, don't be shy about asking them to schedule in extra time for you. Explain your situation and that it is really important to you to have plenty of time for Q&A with the doctor. And don't forget to get their fax number.
Write a 1-page summary of your history and symptoms and your goals for the appointment. Print and complete an OSDI. Fax these to the doctor the day before your appointment. And if you know that you have adverse reactions to any dyes, drops or tests likely to be administered (I hear of this every now and then from dry eye patients) highlight this on your 1-pager as well.
Bring a friend. If you get anxious or emotional in dr. appointments or are fearful you'll forget your questions, bring a list and a family member or friend. Brief them in detail about your concerns beforehand so they can help take your part if the appointment gets derailed in any way.
Housekeeping. Finally, when you are settled with a better doctor, do your previous doctor (and his/her future patients) the kindness to let them know why you left. Be courteous - not acrimonious. Write a brief letter telling them honestly what you feel your needs were and how they failed to meet them, and what you think they could do to be more helpful to future patients. We all need to be part of making things better for others!