It’s been a long time since I’ve written about health care, but in view of some recent developments on my personal health front, I felt the urge to blow off some steam once again.
My neck and back have long been sources of pain and frustration. MRIs and X-rays at various times in the past have revealed arthritic changes that were causing the pain by impinging on nerves at various points. Thus, it was no surprise that after my most recent bout with a two-week painful stiff neck, with severely restricted head motion, an MRI revealed that I had spinal cord compression at C4-5.
The story here is how the medical industry handled this diagnosis and how I probably could have the diagnosis almost four years ago if my doctor of the time hadn’t been dismissive, for whatever reason.
Within hours after Wednesday’s MRI, my primary care doctor’s office called me with the results. The radiologist at the hospital had called them with a “wet read” of the MRI. (It should be noted that I had two MRIs on the same day and still haven’t received the results of the other—in that case, no news is good news.) So, I have to assume that the radiologist felt that the situation was important enough to merit an immediate call instead of the faxing the report in a couple of days, as is the usual procedure.
This diagnosis calls for a consultation with a neurosurgeon, as surgery might be required to prevent further damage. My doctor’s office called three neurosurgeons before finally getting me an appointment in mid-July. The first neurologist they called was booked until September; the second didn’t take my insurance; and the third could “get me in” in mid-July. Not having better alternatives, I took the mid-July appointment.
That was yesterday. Today, I called that neurologist’s office to ask to be put on the cancellation list. I want to get this assessment as soon as I can. It seems to be standard procedure around this town that one has to wait inordinately long for appointments with in-demand specialists. Well, I really don’t know how inordinate it is, because I don’t know how dire my situation is. Yeah, I know, I’m selfish. If I took an appointment of someone with MS, for example, they’d have to wait. I have a good knowledge of fundamental economics, and I guess this is a good indication of a specialist shortage.
Be that as it may, I recall that in September 2003, I presented at my then doctor’s office with a similar stiff neck, with which I had been suffering for several weeks. He essentially shrugged it off, telling me to “take some Tylenol.” I returned in January of 2004, with both back and neck pain. He met my concerns with more dismissiveness, telling me to “get out and be active.” He knew that I was walking daily and hiking longer distances (6-8 miles) once a week, or maybe he forgot. In either case, what I got was another handwave and a waste of my time. This is what he wrote in my chart on 9/16/2003:
The patient presents today acutely for evaluation of posterior neck pain, and a dull, background headache, which he explains has been present for the past two to four weeks. These do not limit him in any significant way, and he states he is walking two to three miles, three to four times weekly, and one day of the week walks six miles. He has no fevers, chills, change in appetite or cough. He further denies symptoms consistent with allergic rhinitis. He states that he has had mosquito bites and is outdoors, and he is concerned regarding possible West Nile Virus or tickborne encephalitis, which he has read about on the internet [sic].
First of all, I mentioned tick-borne Lyme Disease and mosquito-borne WNV and Eastern Equine Encephalitis, which I had indeed read about on the Internet—probably on the Mayo Clinic Health Letter web site, but let me not split hairs. Being outdoors a lot, these are always rational concerns. Perhaps this digression by me, which resulted in somewhat derisive scorn by Dr. C, was a mistake, but I wanted to describe my concerns as comprehensively as possible. While he dismissed those concerns, he seemed to want to blame it on hay fever, hence the mention of allergic rhinitis. (I guess hay fever isn’t an Internet disease. 🙂 ) At no time did Dr. C ask any questions about muscle weakness, numbness, or other neurological symptoms. He must have made up his mind that I was a hypochondriac.
So, Dr. C conducted a quick examination after generally ruling out infectious disease and the dreaded hay fever, which he documented as follows:
General: He is extremely pleasant and appears in no distress. HEENT: Exam reveals pupils equal and reactive with normal fundi. TMs are in tact [sic] bilaterally without effusion. Oropharnyx is benign, without erythema or exudate. Neck: Exam reveals neck is supple with a full range of motion, and reproduction of the patient’s posterior cervical neck pain on extreme lateral gaze and upward gaze. There is no adenopathy or thyromegaly. Cardiac: Rhythm is regular without murmurs or gallops. Apical rate is 70. Lungs: Clear to auscultation bilaterally. Abdomen: Soft, nontender and without organomegaly or masses.
OK, so I all I had was a pain in the neck of several week’s duration. X-rays in the past had revealed osteoarthritis of the cervical spine. Did this not merit further examination, even if it was not caused by an infectious disease that I caught on the Internet? Apparently not, for Dr. C wrote the following plan:
PLAN: The patient was given reassurance regarding his concerns about infectious etiology of his cervical pain, and treatment as above. He will follow-up as scheduled in four months.
In other words, Dr. C saw no need for further investigation once he was able to dismiss a possible infectious etiology. (He had casually told me, although he didn’t note this in the chart, that if I had one of those arthropod-borne illnesses, I would be very, very sick. I suppose that this is true with encephalitis or West Nile virus, but is it really the case with Lyme Disease? Isn’t it true that by the time debilitating symptoms appear, that disease becomes much more difficult to treat?)
What motivated Dr. C to send me on my way, so as to deny me a four-year head start in diagnosing and treating this serious disorder?
Here’s one conjecture. Dr. C had been an Army doctor, and fairly recently, too. With this background in mind I should have been wary when I first engaged his services, but I ignored it because several trusted people, including my ophthalmologist, had recommended Dr. C. (Seems that those who recommended him were banking on the reputation of Dr C’s father, Dr. C, Sr., but I digress.) I now see the error of my ways. I think Dr. C’s Army training pretty much screwed me over. Keep the troops marching and don’t be spending money on expensive diagnostics. The Army doesn’t have money for MRIs for stiff necks. Moreover, after enough dealings with Dr. C, I began to believe that he was overplaying the gatekeeper role, rationing expensive diagnostics in an overrestrictive manner to cozy up with the insurers. It must have pretty much felt like keeping the General happy.
Fortunately, my present doctor, Dr. F—my fourth primary care physician since Dr. C—believed that my symptoms were serious enough to warrant an MRI. I’m hoping that there is still time to treat the ailment, especially because I have to wait for a neurologist.
Dr. C, if you are reading this, let me repeat what I wrote to you in my May 2004 sendoff letter: “What I … wanted from you was informed commentary on what my options might be (other than Tylenol).” We would have discussed whether further diagnostics would be beneficial and decided on an appropriate course of action. What I got instead was a roadblock in my path. Eventually, the stiff neck went away, but it came back with a vengeance a few weeks ago after an absence of a few years.
What do I want from a primary care physician? Three things, aside from treating minor ailments and injuries:
- Listen open-mindedly
- Proceed appropriately when conditions require further investigation
- Refer me to specialists as necessary
Dr. C did not listen, he dismissed my symptoms out of hand, and a referral to a specialist was apparently the farthest thing from his mind. In contrast, my current doctor, Dr. F, when I first presented with the stiff neck, listened to me, evaluated my condition, told me an MRI was needed, and said that he “smelled a neurosurgical consult here.” His assessment turned out to be right on the money. I wish Dr. C had half the sense that Dr. F has.
I’ll write more as this process continues.