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Reading Your Doctor’s Notes

Although patients have had the legal right to read and correct their own medical records since 1996, actually accessing them is often a time-consuming and expensive process. Although advocates have encouraged doctors to share their notes with patients, physicians have been reluctant, fearing their patients may misinterpret what they read or become overly worried about test results.

Findings from a year-long study in which patients were given complete access to their medical records show that both patients and doctors were overwhelmingly satisfied with the outcome of sharing records. In the study, patients were emailed a link to their doctor’s notes a couple days after each visit. According to the New York Times,

“Approximately three-quarters of all the doctors said that such transparency had none of the dreaded impacts on their practice. Many felt there was more trust, better communication, more shared decision-making and increased patient satisfaction. While a portion of the doctors were hesitant at the beginning of the study, not a single one opted to stop sharing notes with patients after the study ended.”

In addition to helping patients feel more in control of their medical care, nearly 80% said they took their medications more regularly and were better able to follow their doctors’ recommendations when they had access to the notes.

Appointments are such a blur. Even though I always take a notebook to appointments, my notes usually wind up a jumbled mess. I would love to be able to see my medical record so easily. We all might have such access relatively soon — representatives from several major medical groups are meeting next week to discuss implementing records sharing on a wider basis.

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My Ideal Headache Specialist

Migraine Awareness Month Blogging Challenge #19: “The Match Game” — Describe your perfect doctor to treat your migraines.

My ideal migraine doctor attended Hogwarts and then completed four years at a top-notch magical medical school. After a four-year residency in neurology, she did a two-year fellowship in headache medicine at the world’s best magical headache clinic. She’s kind, compassionate, brilliant and innovative — and she’s never had a patient whose migraine attacks couldn’t be controlled. Chronic migraine is her expertise and her typical patient goes from 25 migraine days a month to five. The treatment is complicated, painful, time-consuming and, of course, expensive, but it works beautifully.

I feel a little snarky writing that I want a magic doctor in response to the blog challenge, but I’m tired and fed up as I begin week four of severely disabling migraine attacks. I have seen so many headache specialists, including some brilliant, well-respected, highly regarded, compassionate, academic superstars and yet I still have a migraine nearly every day. My current headache specialist and the person I saw in Boston are my favorites. I trust them both tremendously and know they have my best interests at heart. And yet I still have a migraine nearly every day. It feels like my migraines are beyond the current understanding and experience of medicine and that only a Hogwarts graduate has the knowledge to get them under control.

National Migraine Awareness Month is initiated by the National Headache Foundation. The Blogger’s Challenge is initiated by Fighting Headache Disorders.

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Medical Groups Urge Doctors to Avoid Unnecessary Tests & Scans for “Uncomplicated Headache”

Through the campaign Choosing Wisely, nine U.S. medical groups are urging doctors to reduce the use of 45 tests, procedures and treatments that may be unnecessary for patients. Each of these groups, which represent different medical specialties, created a list entitled “Five Things Physicians and Patients Should Question.” The one item that pertains to headache appears first on the American College of Radiology‘s list:

Don’t do imaging for uncomplicated headache.
Imaging headache patients absent specific risk factors for structural disease is not likely to change management or improve outcome. Those patients with a significant likelihood of structural disease requiring immediate attention are detected by clinical screens that have been validated in many settings. Many studies and clinical practice guidelines concur. Also, incidental findings lead to additional medical procedures and expense that do not improve patient well-being.

This recommendation makes logical sense and my rational mind agrees with it. However, I don’t know how well it will go over with patients.

There’s no scan or blood work that will prove you have migraine, which can be terribly unsettling. When someone has severe pain in their head, the immediate fear is that they have a brain tumor or aneurysm — you know, something scary and life-threatening. Getting a diagnosis of migraine without having any tests leaves people wondering if something was missed and if their life could be in danger. Negative MRIs and CT scans give patients peace of mind that migraine is the correct diagnosis. (I have no empirical evidence for this analysis, just eight years of interacting with terrified people who have headaches.)

Choosing Wisely’s guidelines do not tell doctors to refrain from testing in all cases, but provide “specific, evidence-based recommendations physicians and patients should discuss to help make wise decisions about the most appropriate care based on their individual situation.” The key here is that physicians and patients discuss the options.

I wonder if any conversation would have calmed my fears sufficiently for me to forgo my first MRI (or CT scan or MRA or spinal tap). I would like to think so, but before I became steeped in the migraine and headache world, practically all my encounters with headache were in movies, TV shows or books, where head pain almost always means brain tumor. Though the gigantic majority of all headache disorders are not life-threatening, society’s general take on headaches falls into two categories: no big deal and big, huge scary deal. For someone to see a doctor about headaches, they usually believe they fall into the latter category.

Tell me about your experience. Have you had imaging done for your headaches or migraines? Could you have accepted your diagnosis without the imaging?

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Seattle Doctors, Neurologists & Headache Specialists

I’ve been asked about Seattle headache specialists and neurologists more times than I can count in the last month. My experience is quite limited, but the online support group and forum has a thread with recommendations for Seattle headache doctors. If you have any to add, please do! You can also check What Do You Think of Your Doctor, an earlier post with lots of good suggestions, some in Seattle, some elsewhere.

Here’s what I know:

I’ve seen Sylvia Lucas at UW and Sheena Aurora at Swedish. They are both kind and caring. We all click with different people, of course, but I found Dr. Lucas to be more patient-oriented and Dr. Aurora to be more research-oriented. Both have at least three-month long waiting lists. It took six months to get into my first appointment with Dr. Lucas and follow-ups are usually scheduled two months out. Dr. Aurora is more like three months for an initial appointment.

A friend sees Patrick Hogan, an osteopathic neurologist, in Tacoma. His number is (253) 284-4488. He requires a doctor’s referral regardless of your insurance and your family/general physician will have to contact his office to get you in.

For other doctors in the Seattle area — or anywhere else in the US, check the National Headache Foundation’s physician finder or the American Headache Society’s health care provider search.

8/14/14: Many readers have lamented Dr. Elena Robinson‘s move to Vancouver. She’s back in Seattle and is in practice with the University of Washington.

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Searching for a Concrete Diagnosis

“My doctor seemed angry with me for not responding to treatments.” “My doctor couldn’t find a diagnosis and just gave up on me.” “If I know what’s wrong, then maybe something can be done to treat it.” Everyone with a headache disorder probably says something along these lines.

Headache disorders are difficult to diagnose. MRIs, blood tests, lumbar punctures…. If one of these turns up something, then there’s a high likelihood of being diagnosed with something concrete. Usually, though, they only rule out possibilities. It may seem like your doctor has given you a diagnosis by default. And that’s usually the case! Some disorders are only diagnosable by process of elimination. Migraine and chronic daily headache are two of those. (I think cluster headaches too, but am not sure). They just don’t show up on tests.

With a diagnosis based on vague information, we keep searching for what’s wrong. If nothing shows up on tests and it can’t be treated effectively, then how can it really be the right diagnosis? No reason to stop looking, but the search can overwhelm you. Also, fixating on one aspect may make you lose touch of other important factors or possible illnesses. I’ve been focused only on migraine for the last six years and I’ve begun to wonder if I’m missing another problem.

You know what patients think when they can’t find a clear diagnosis. What’s it like for a doctor to not really know what’s going on? This New York Times article includes a glimpse into the answer.

“Why do doctors and patients often approach the diagnosis of disease so differently?” Barron H. Lerner, MD asks in When the Disease Eludes a Diagnosis:

But what happens when [severe] conditions are ruled out? In such cases, doctors proceed to search for less dire (and, it must be said, more mundane) diagnoses. The trouble is that at this stage, some physicians, busy with other patients and duties, lose interest.

[non-contiguous paragraphs]

Part of the problem with these conditions is that existing treatments are not nearly as effective as those for, say, heart attacks and pneumonia. As a result, doctors may grow irritated when patients continually complain of symptoms that cannot be “cured.”

Speaking of a current patient, he wrote:

While trying to be as sympathetic as possible, I find myself reminding Lucy of the limits of certainty in medicine. Despite enormous advances in technology, some diagnoses may remain elusive. I also told her that it was highly unlikely her doctors missed diagnosing a disease that could have been successfully treated. But she remains convinced that she deserves to know exactly what she has.

So we will continue to search.