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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.


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4 Responses to “The Continuing Shingles Saga & The Absence Of A Medical Home”

  1. nanarcr says:

    You are so right. My devastating complete disability, confinement to wheelchair, need for in-home care attendants and chronic progressive probably eventually terminal disease could have all been lessened (if not eliminated) by even ONE of dozens of physicians I consulted bothering to look past a few extra pounds (that crept up as I became increasingly inactive due to illness), and actually listen to me. Thank goodness your mother-in-law has a physician in the family. In my case, a close friend is a physician who said, “No, you are not a hypochondriac. Put your foot down and make someone listen.” Well, after almost dying in a hospital and being discharged to “schlep and lose weight”, and being at home afterward so ill and alone I barely knew what day it was, I followed my friend's advice, got to the surgeon who did the biopsy, and finally with a tissue diagnosis I was finally, finally, finally credible to the medical community.

    And I've still had to be my own doctor, social worker, and advocate. A month to get the proper paperwork to the DME company for a hospital bed? FIRED. Fentanyl patch instead of neurosurgeon referral for intractable trigeminal neuralgia and dysphagia? FIRED.

    In my case, my true “medical home” turned out to be a brilliant specialist whom I'd seen for almost 20 years, who knew me well enough, believed in me, and was appalled that I'd been permitted to become so ill who picked up the ball and got me to another specialist, and so forth through the network.

    Sometimes PCPs just get in the way. That old HMO managed care mindset has lingered in a whole generation of Primary Care docs, and I suggest that that is at the root of what your mother-in-law experienced. I hear it from friends, particularly the elderly, but others as well.

    With a whole generation of physicians trained to limit care and ignore the patient, this will not change until the next generation emerges. Much the same as the Israelites wandering for 40 years until the rebellious generation died off before being permitted to enter the Promised Land.

    Maybe the primary care shortage isn't such a bad thing. Perhaps it is time for patients to become more sophisticated, educate themselves, and self refer to specialists and surgeons. The gatekeeper approach has limited care while simultaneously contributed to this high cost of unnecessary testing, misdirected services, and cost lives and health.

    What has my lost productivity cost society, myself and my family, and what has my preventable disability cost us all?

    A long string of my primary care physicians over the past twenty years should owe insurance companies and the taxpayers refunds. Perhaps once we make physicians financially liable for quality of care we'll see a change. Until then, expect more of the same.

  2. nanarcr says:

    You are so right. My devastating complete disability, confinement to wheelchair, need for in-home care attendants and chronic progressive probably eventually terminal disease could have all been lessened (if not eliminated) by even ONE of dozens of physicians I consulted bothering to look past a few extra pounds (that crept up as I became increasingly inactive due to illness), and actually listen to me. Thank goodness your mother-in-law has a physician in the family. In my case, a close friend is a physician who said, “No, you are not a hypochondriac. Put your foot down and make someone listen.” Well, after almost dying in a hospital and being discharged to “schlep and lose weight”, and being at home afterward so ill and alone I barely knew what day it was, I followed my friend's advice, got to the surgeon who did the biopsy, and finally with a tissue diagnosis I was finally, finally, finally credible to the medical community.

    And I've still had to be my own doctor, social worker, and advocate. A month to get the proper paperwork to the DME company for a hospital bed? FIRED. Fentanyl patch instead of neurosurgeon referral for intractable trigeminal neuralgia and dysphagia? FIRED.

    In my case, my true “medical home” turned out to be a brilliant specialist whom I'd seen for almost 20 years, who knew me well enough, believed in me, and was appalled that I'd been permitted to become so ill who picked up the ball and got me to another specialist, and so forth through the network.

    Sometimes PCPs just get in the way. That old HMO managed care mindset has lingered in a whole generation of Primary Care docs, and I suggest that that is at the root of what your mother-in-law experienced. I hear it from friends, particularly the elderly, but others as well.

    With a whole generation of physicians trained to limit care and ignore the patient, this will not change until the next generation emerges. Much the same as the Israelites wandering for 40 years until the rebellious generation died off before being permitted to enter the Promised Land.

    Maybe the primary care shortage isn't such a bad thing. Perhaps it is time for patients to become more sophisticated, educate themselves, and self refer to specialists and surgeons. The gatekeeper approach has limited care while simultaneously contributed to this high cost of unnecessary testing, misdirected services, and cost lives and health.

    What has my lost productivity cost society, myself and my family, and what has my preventable disability cost us all?

    A long string of my primary care physicians over the past twenty years should owe insurance companies and the taxpayers refunds. Perhaps once we make physicians financially liable for quality of care we'll see a change. Until then, expect more of the same.

  3. LisaEmrich says:

    A case of shingles, which developed only weeks after severely comprising my immune system with 5-days of IV Methylprednisolone at dosage of 1000mg each day, was probably the last time I took myself to the E.R. I had seen what shingles looked like on my mother's torso and mine was developing rapidly on my face throughout the day. It wasn't until around 10PM when I finally admitted that shingles 'had to be' the cause of my strange break-out which was increasing in itchiness and pain.

    Knowing the warnings of starting anti-viral meds as soon as possible, I did go to the E.R. After I was called back, it was probably the fastest accessment and diagnosis by an E.R. physician…..ever. He asked me relevant questions; I gave answers. Then he asked me – “what do you think this might be?” His answer – “you're right!”

    However, since the breakout was surrounding my eye, he did have an opthamologist come look to make sure that he didn't think it had spread to my cornea. I still had to follow-up with my own eye doctor the next morning. I was out of the E.R. in less than an hour, filled my anti-viral prescription at a 24-hour pharmacy, and started them before going to sleep. The entire visit even was billed at less than what my health insurance plan negotiates.

    After the shingles cleared up, I still have pain for which I take gabapentin (ie. Neurontin) at much greater doses than was prescribed for your mother-in-law. The drug also helps with nerve pain associated with multiple sclerosis, so I've always got a good supply on hand. Never leave home without it.

    I hope that your mother-in-law begins to feel relief soon and I just wanted to share my story of an E.R./educated patient success story.

  4. LisaEmrich says:

    A case of shingles, which developed only weeks after severely comprising my immune system with 5-days of IV Methylprednisolone at dosage of 1000mg each day, was probably the last time I took myself to the E.R. I had seen what shingles looked like on my mother's torso and mine was developing rapidly on my face throughout the day. It wasn't until around 10PM when I finally admitted that shingles 'had to be' the cause of my strange break-out which was increasing in itchiness and pain.

    Knowing the warnings of starting anti-viral meds as soon as possible, I did go to the E.R. After I was called back, it was probably the fastest accessment and diagnosis by an E.R. physician…..ever. He asked me relevant questions; I gave answers. Then he asked me – “what do you think this might be?” His answer – “you're right!”

    However, since the breakout was surrounding my eye, he did have an opthamologist come look to make sure that he didn't think it had spread to my cornea. I still had to follow-up with my own eye doctor the next morning. I was out of the E.R. in less than an hour, filled my anti-viral prescription at a 24-hour pharmacy, and started them before going to sleep. The entire visit even was billed at less than what my health insurance plan negotiates.

    After the shingles cleared up, I still have pain for which I take gabapentin (ie. Neurontin) at much greater doses than was prescribed for your mother-in-law. The drug also helps with nerve pain associated with multiple sclerosis, so I've always got a good supply on hand. Never leave home without it.

    I hope that your mother-in-law begins to feel relief soon and I just wanted to share my story of an E.R./educated patient success story.

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