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The Continuing Shingles Saga & The Absence Of A Medical Home

shingles-on-scalpRegular readers of Better Health will recall my personal frustration that my mother-in-law received 2 months of physical therapy, a head CT, and extensive blood testing in response to a shingles outbreak that I was able to diagnose easily over the phone.

The misdiagnosis that resulted in chronic post-herpetic neuralgia and a $10,000 waste of resources, has continued to vex me. After Mrs. Zlotkus and I realized what was going on, I outlined for her the usual treatment regimen for shingles pain – explaining that most people needed a fairly high dose of the nerve pain medicine before they experience any relief at all, and to make sure her doctor gave her an adequate dose before deciding whether or not it worked.

And you can guess what happened next.

Mrs. Zlotkus was seen by a young and inexperienced neurologist who insisted on giving her a very tiny dose of the nerve medicine (it has an excellent safety profile even at very high doses). Of course, it didn’t help. She was given 100mg twice a day (where shingles sufferers often need as much as 1800mg/day) with instructions to return in a few weeks. The doctor also told her that she “couldn’t be sure the pain was due to shingles since she hadn’t seen the original rash.”

That’s like an ER physician saying to a trauma victim that they can’t be sure of the cause of the injuries because they didn’t witness the car accident.

At that point I instructed her to find an experienced pain management specialist who’d know how to titrate her medication appropriately – and who might even be able to do a nerve block to get her some immediate pain relief.

Luckily, Mrs. Zlotkus “knew somebody who knew somebody” and was able to make an appointment the next day with a senior anesthesiologist experienced in nerve blocks. The pain management physician knew just what to do, administered the nerve block, increased her medication dose, and sent her on her way. She experienced immediate relief of her symptoms and felt like a new woman.

If Mrs. Zlotkus had gone directly to the anesthesiologist in the first place, she might have saved herself months of agony and a $10,000+ bill to Medicare. (Better yet she would have gone to her PCP when she first noticed scabs on her scalp and he would have prescribed an anti-viral medicine that could have aborted the entire pain syndrome.) But how was she to know which provider was right for her? How could she know that her neurologist was prescribing her the wrong dose of pain medication, and that a nerve block might solve all of this nicely. Without the correct diagnosis, a cascade of wasted resources and personal suffering ensued. Without me nudging her in the right treatment direction – perhaps she’d still be doing neck stretching exercises in physical therapy?

I am a fan of the “medical home” concept as described by the AAFP and wonder if it could have made a difference in Mrs. Zlotkus’ care:

“In this new model, the traditional doctor’s office is transformed into the central point for Americans to organize and coordinate their health care, based on their needs and priorities. At its core is an ongoing partnership between each person and a specially trained primary care physician. This new model provides modern conveniences, like e-mail communication and same-day appointments; quality ratings and pricing information; and secure online tools to help consumers manage their health information, review the latest medical findings and make informed decisions.

Consumers receive reminders about necessary appointments and screenings, as well as other support to help them and their families manage chronic conditions such as diabetes or heart disease. The primary care physician helps each person assemble a team when he or she needs specialists and other health care providers such as nutritionists and physical trainers. The consumer decides who is on his or her team, and the primary care physician makes sure they are working together to meet all of the patient’s needs in an integrated, ‘whole person’ fashion.”

In summary, there’s a lot of waste in our medical system caused by a lack of coordination of care, hasty diagnoses, and defensive medicine. Even the most common diagnoses (like shingles) can end up setting off a chain reaction of over testing, incorrect treatment and personal suffering. We need an “OnStar” system for healthcare – a way to help patients navigate their way to the right care at the right time. The medical home model is as good a GPS system as any… so long as the primary care physician at the center of the coordination of care is not so rushed that she can’t do her job properly. And that’s the secret to making the medical home work – giving the doctor enough time to unravel the problems at hand and figure out the best next steps in care. If we get this right, we can probably say goodbye to CT scans for shingles.

Healthcare Costs: Under-Thinking Leads To Over-Testing

My mother-in-law just had a CT scan of her head in the Emergency Department of her local hospital. My husband called me to ask if I could “talk to her about her headache.”

Severe headaches in the elderly are indeed worrisome, and I wondered if she had fallen recently – if she might have a bleed in her brain requiring immediate surgery. Of course, she’d need a CT scan to rule that out… I was prepared for the worst. But what I learned by simply talking to Mrs. Zlotkus was unexpectedly revealing – not only about her diagnosis but about our healthcare system in general.

As it turns out, Mrs. Zlotkus had been having severe headaches for about 3 months. She was taking Vicodin daily to “take the edge off.” When I asked her about the location of the pain, she said that it was “just on one side of my head, from the top of my neck to the top of my head.” I asked her if the pain sometimes traveled to the other side, or if it involved her eye. “Never,” was her quick response. She also told me that she’d been seeing a physical therapist for 2.5 months for neck stretching exercises.

Mrs. Zlotkus told me her CT scan was negative, and that her blood tests didn’t show any “temporary arthritis.” (That’s temporal arteritis, I presume.)

“Well,” I said, “There’s only one thing left that I can think of that will give you a headache in the exact area you’re describing – and that’s shingles. Did you notice any scabs or painful bumps on your scalp when the headaches first started?”

“Why, yes!” Said Mrs. Zlotkus. “About 3 months ago I noticed some very painful, crusty scabs on my scalp. I thought for sure it was because my hairdresser used extra strong chemicals on my hair. I scolded her for it. She told me to put tea tree oil on it.”

Oh, boy. There it was – a diagnosis as plain as the nose on her face.

“Um… Well did you tell the ER docs about the scabs?”

“No. They never asked me about it and I didn’t see what my hairdresser’s chemical burn had to do with my severe headaches.”

My mother-in-law’s work up (ER visit, CT scan, several doctor visits, pain medicines), misdiagnosis (neck muscle stiffness), and mistreatment (physical therapy) for shingles probably cost upwards of $10,000. Worse than that, she did not get anti-viral treatment early enough in her outbreak to prevent a long-lasting pain syndrome (called post-herpetic neuralgia). Now that she has this shingles-related headache, it’s very hard to treat. And taking lots of acetaminophen-rich medications (Vicodin) is the last thing her liver needs right now.

So how did the healthcare system fail Mrs. Zlotkus? In my opinion, this is a great example of the “failure of synthesis” that Evan Falchuk discusses on his See First blog. Somehow, the physicians involved in Mrs. Zlotkus’ care didn’t take the time to think about her symptoms, to ask the right questions, and to put all the puzzle pieces together. Instead, they just ruled out the potential emergency issues (a stroke/hemorrhage, or temporal arteritis) and gave her a follow up appointment with a neurologist (who couldn’t fit her in their schedule for 2 months). They didn’t take a full history – they just dumped her in the most likely diagnostic category (neck stiffness) and let some other specialist follow up. Shameful.

I’ve described more egregious examples of hasty medical care on this blog – consider the case of an elderly woman (the mother of a friend of mine) who was misdiagnosed with “end stage dementia” when she really had acute delirium from an overdose of diuretics… Or the case of my girlfriend who was mistaken in the ER for a drug seeker when she was suffering from a kidney stone.

Sometimes I feel as if I have to keep an eye on all my friends and family before they set foot in a hospital, ER, or doctor’s office. I’m afraid that those providing their care will be so rushed and thoughtless that my loved ones will wind up with a huge bill, the wrong diagnosis, and perhaps even a near-death experience. I am seriously afraid for them.

The bottom line is that we have to stop rewarding providers for volume over quality. We have to value the history and physical exam beyond the CT scan and lab tests. We have to give doctors the chance to think about their patients – rather than turn up the speed dial on the clinical treadmills as a means to reduce costs.

My mother-in-law just spent $10,000 of our tax dollars on a diagnosis that could be made in 5 minutes of thoughtful questioning over the telephone. Multiply that cost by the number of other Medicare beneficiaries who are suffering similar misdiagnoses in this country and we’re talking serious money.

Under-thinking leads to over-testing. Has the CBO taken that into consideration in its scoring of various reform plans? I don’t think so. To me, this is yet another reason why we need physicians at the table in healthcare reform – we see the real cost drivers that others might not think of – even if some of us are too busy to diagnose shingles correctly!

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