The Tale of Dr. Mean

Having a yucky morning. After feeling some relief from the pain and pressure on the weekend, I've had a couple of bad days, with not just pain and pressure but stomach upset.

Since I'm cranky, I will dedicate today's post to a story I promised to tell, which some friends have heard, about the worst experience I've had with a doctor in pursuit of some answers about this new back pain -- probably the worst experience I've ever had with a health-care practitioner, ever. It says a lot, I believe, about the Canadian health system (which, on balance, I approve of, but certainly has its flaws), and, in particular, the problems around orthopedic care.

After a spinal fusion with metal rods for scoliosis when I was eight years old (that's a whole other story), I've seen many orthopedic surgeons regarding sciatic pain and later lower-back pain that has plagued me on and off since my 20s (I should say that until this year I have missed maybe a day and a half of work because of back pain; I just lived with it). The reason I've seen so many orthopedists is that, one by one, each of them packed up and moved to the U.S. shortly after I began seeing them, including the one who did my original surgery.

In my late 30s, I went to a lovely old guy who was close to retirement and had operated on my brother. He knew a lot, and he suggested I should see him every six months (I didn't see any reason to go so often) in case my arthritis and stenosis worsened, though he said he didn't see any paralysis in my future. One day I might need a fusion of some of the remaining vertebra, he said, but that was to be avoided and in the meantime he strongly recommended I see a physiotherapist he worked with closely, who worked in the hospital's outpatient physio clinic.

The physiotherapist was brilliant -- I learned more from her about scoliosis and, more important, the aftermath of its surgical treatment, than I ever had from any surgeon. She never performed any therapy, just taught me exercises, recommended lifestyle accommodations and explained what my body was doing. Seeing her from time to time kept me out of the orthopedist's office, but eventually the clinic was privatized and for reasons that seemed complex and unfair, she was pushed out of the hospital. I c0ntinued to see her after she set up a private practice, even though her services were no longer covered by OHIP.

Meanwhile, my comfy old orthopedist retired. When I asked him whom I could see in his place, he recommended two younger doctors at his hospital. I went to one (the one I called Dr. Second in an earlier post) but found him a bit arrogant and unhelpful; when I asked him about exercise, with an air of impatience he had his secretary dig out an old repeatedly mimeographed sheet containing scratchy old diagrams, and kind of threw it in my direction, and he made me feel like an idiot for being sucked in by a podiatrist who sold me orthotics, which he considers an insurance scam. When Dr. Comfy came out of retirement part-time for a short while, I saw him again and he suggested I try the second guy, whom I'll call Dr. Mean.

Dr. Mean wasn't mean at all the first couple of times I saw him. He was polite and attentive, and his attitude toward surgery was conservative; he predicted a lot of pain because of the lower-back stenosis, and said I might develop "drop foot," but recommended nerve-root cortisone injections (which I never tried) and keeping good muscle tone. He also suggested the part of my lower spine that wasn't fused might fuse on its own and the pain might go away as a result. The last time I saw him, in January 2007, he said I should come back in a year.

Exactly a year later, my lower-back and sciatic pain vanished, almost overnight, but at around the same time I began feeling odd twinges in my upper back between my shoulder blades, which occasionally shot down into my armpits and arms. By spring of 2008, it was worsening and because it was something I'd never experienced before -- and because I'd had breast cancer -- I was a little concerned, although it wasn't debilitating. My wonderful physiotherapist had gone missing, so I couldn't ask her anything. I asked my GP if he knew of any physiotherapist that specialized in spines, and he gave me a blank look, then suggested I call the Canadian Back Institute (which I didn't do because my brother was given bad advice by them). My GP didn't seem worried and said repeatedly that he was not surprised my spine would throw me some discomfort here and there. I suggested maybe I should go back and see Dr. Mean, and my GP agreed that was a good idea and ordered an X-ray to take to him.

So I called Dr. Mean's office myself and made an appointment. Nowadays some specialists won't take appointments without a referral from a family doctor if it's been a year since you last saw them, or maybe two years. But some don't seem to care. In any case, Dr. Mean's secretary didn't object in any way although it had been a little over a year since I'd seen him, and she slotted me in for the end of May.

When I showed up, Dr. Mean opened my file and asked why I had referred myself without going through my GP. I was a bit stunned and nervous and didn't remind him that the last time I'd seen him, he'd told me to come back in a year. "Trying to be your own doctor, are you?" he said, without a smile. Then he asked me what was wrong. When I told him I had upper-back pain and that my lower-back stuff had gone away, he said, "A lot of people have back pain. I can't see every person who has back pain. My time is valuable."

I was more stunned, and stuttered something about thinking it was a good idea to check in with my orthopedist when my back pain changed dramatically. He shuffled through my files. "You were referred to me for lower-back pain," he snapped. "If you're coming to me for a new problem, you need to be referred by your GP. He should know that."

"I'm sorry," I said. Trying to keep it light, I chuckled a bit and said, "You gotta imagine that sounds kind of crazy to me since I only have one spine." This was, apparently, the wrong thing to say. He got really angry then, in my opinion wasting a lot of time telling me how much of his time I was wasting while I kept trying to get him to look at my X-rays. "I thought you were my orthopedist," I said, "and that I could come to you for ongoing problems with my back."

"It doesn't work that way!" he said over and over. I stammered out my theory that I was developing a hunchback in the unfused upper part of my spine and that that must be creating a lot of stress at the junction of the fusion; I suggested I needed to know what kind of changes I could expect as I aged (because nobody had ever been very specific about that). He agreed that I might have some changes, but continued to be dismissive. I began to cry and reminded him that I had had breast cancer and I was worried about bone metastasis. He finally took a look at my X-ray and then pooh-poohed its usefulness while at the same time saying my back looked fine. He turned me around and examined me perfunctorily.

I asked him whether he wanted to do a new X-ray while I was there. No, he didn't. I asked him whether he worked closely with a physiotherapist who was knowledgeable about scoliosis surgery. Again, I got the "It doesn't work that way!" response. "If you need a physiotherapist," he barked, "look in the phone book."

I was so distressed at this point that I said something like, "Look, I'm not stupid, but I obviously don't understand how it does work. Could you explain it to me? Are you not my orthopedist?"

"I'm not stupid, either!" he replied. Then he softened a little and said, "OK, I know you've had cancer and so you're concerned." But somehow the exchange deteriorated from there, and ended with him saying, "Get yourself another doctor," and stomping out the door.

I had never felt so unsafe and helpless in my life, not to mention humiliated and alone. How was I ever going to get to the bottom of this problem if I didn't have an orthopedic surgeon who provided me with ongoing care? It takes a year to get a first appointment with a spine doctor, of which there aren't many in Canada; their phone greetings say so, usually along with the warning that Dr. So-and-So sees only "surgical patients," which I assume means they don't do ongoing care, they only do surgery. But how do they know whether you need surgery if they don't give you some ongoing care? In the meantime, it took me a day or two to realize that what Dr. Mean had been trying to say to me without actually saying it was that he wouldn't be able to bill for that appointment because I had not been properly referred. How was I to know the system works that way? Why didn't my GP? Was Dr. Mean simply having a bad day, or was he taking out on me his frustration with the stupid, fragmented way our medical system works?

I admit that I am an argumentative person, and I often discuss my case vigorously with doctors, but I seldom get a hostile or unkind reaction, and I've never encountered anything like the Dr. Mean debacle.

Meanwhile, in June my oncologist ordered a bone scan and bone-density test just to be sure there wasn't cancer in my spine; when I called for the results I was told everything was fine (even though the bone-density technologist told me that I'd lost over an inch in height). I found a new physiotherapist through a friend. In December my back pain had become so intense I went to the emergency department, where, to my shock, the doctors dug out the July bone scan, told me it showed anomalies in my upper spine and urged me to see my oncologist. That's when she found the lump in my armpit. At my request back in June, she had referred me to another orthopedic surgeon, and it was another eight months before I got to see him, and then only because the new CT scan she ordered at my urging in January showed bone metastasis and a collapsed vertebra.

I only learned recently that there's a new-ish spine centre in Mississauga with an integrated-care system, where you can get in quickly to see a surgeon, who works closely with other types of health-care providers. So that's where I'm going to try for a third opinion.

A friend who recently vacationed in New Orleans visited on the weekend and brought me a voodoo doll. I've hated very few people in my life, and I've been wondering who or what my voodoo doll should represent. Any suggestions?