Pain, a Limp and Winkle Picker’s Disease

By DENISE GRADY
30 sept 2008--Doctors who treat themselves may have fools for patients, but they look like geniuses compared with a reporter who tried to diagnose herself via the Internet.
It seemed so simple. I Googled “foot pain,” and up came two sites with neat little pictures of feet, arrows pointing to various parts and instructions to “click where it hurts.” I clicked and, voila! both sites said my pain — on the top and side of the foot, around the big toe — was probably from a bunion or gout.
Gout? Hmmph. What came to mind was Henry VIII, the movie version, hugely fat and grotesque on his throne, bellowing about his toe. As for bunions, weren’t they from pointy shoes, high heels, a family history? I had none of those. This wasn’t quite adding up.
Onward I clicked. I took fleeting comfort from a slide slow of hideous foot diseases that I clearly didn’t have. Lists of other ailments didn’t match, either. I don’t have diabetes or flat feet and I hadn’t injured myself. One site mentioned leprosy, which had drama but seemed unlikely. I was baffled.
A podiatrist, recommended by a doctor friend, took about 37 seconds to figure out what was wrong. He shoved my big toe up and down, gave it a squeeze that made me shriek and said smugly, “We’ll take some X-rays, and I’ll show you what’s causing your pain.”
A few minutes later, there it was on his computer screen: a bone spur, sticking up like a tiny, evil spike where the big toe joins the rest of the foot. The cause was arthritis of the big toe, which sounds ridiculous even to me. But it’s real, a wearing out of the cartilage that normally protects the bones from rubbing against each other. I’ve always walked a fair amount — at least three miles a day, often twice that or more in recent years — and at 56, I guess it’s catching up with me. Without realizing it, I’ve been wearing out my feet.
The medical name for this condition is hallux limitus, which means “stiff toe.” It’s progressive, and can turn into hallux rigidus — a really stiff toe. It’s humbling to be hobbled by such a comical-sounding ailment.
The podiatrist recommended shoes with stiff, rounded soles called rocker bottoms, to minimize bending of the joint. I figured out that I also needed lots of room in the toe, to avoid pressure on the spur. He said a cortisone shot into the joint might help. (It didn’t.) He also suggested shoe inserts, orthotics, but I was skeptical because I’ve had knee surgery and I feared the inserts might throw my knees out of whack.
Finally, he said I would eventually need surgery to remove the spur and shorten a bone. He said he could perform it right there in his office, and the sooner the better. At that point, if I’d been able to run, I might have. Instead, I nodded politely and said I’d think about surgery. But it sounded drastic.
I retreated to the Internet. Self diagnosis had been a lost cause (I would have done better had I Googled “toe pain”), but at least it was noninvasive. And knowing the name of the ailment made a big difference. Among other things, the Web cheered me up by revealing that hallux limitus is also called winkle picker’s disease (winkles are snails, and in England, winkle pickers used to be a nickname for pointy shoes, if that makes any sense). Unfortunately, I also found out that it can sometimes be disabling. Three of the more useful links were Arthritis Practitioner (www.arthritispractitioner.com, search for hallux limitus), eMedicine (www.emedicine.com/orthoped, click on foot and ankle) and Foot Physicians (www.footphysicians.com, foot and ankle information).
Some of the information echoed the podiatrist’s advice about shoes, and through trial and error I did find one type that seems to minimize the pain — clogs with firm soles and soft uppers. They are far from stylish, but limping is worse.
Doctor No. 2 was an orthopedic surgeon, who also wanted to operate. When I hesitated, he smirked and said, “When it hurts enough, you’ll come back.” No I won’t! I wanted to snap, but didn’t. He left before I could even ask how many toes he had fixed or what his success rate was. I limped home, feeling like a wimp.
Doctor No. 3 offered to inject a joint-lubricating drug into my toe. It sounded promising, but I chickened out, in part because the drug was approved for knees and not toes and in part because it would cost $2,800, but mainly because the doctor’s nose ran constantly and he let it drip everywhere, including onto a consent form explaining the risk of infection from the treatment.
Back on the Web, I found plenty of fellow sufferers. The patient forums fascinated me, especially the ones where people compared notes about surgery (www.healthboards.com, search hallux limitus; and www.foot.com, click on foot cafe, then message boards, and search hallux limitus). Some had good results, but others wished they had never had the operation — enough to reinforce my ideas about postponing it. Graphic surgical photos put me off, too (www.mdmercy.com, search hallux rigidus). In addition, I have not been able to find a convincing report on success rates, which are hard to sort out because there are different types of hallux limitus and different operations.
So, I have been muddling along for about a year now, walking a bit less, biking a bit more, wearing frumpy shoes and hoping that even if my foot wasn’t getting better, at least maybe it wouldn’t get worse. Recently, at my internist’s urging, I saw doctor No. 4, a podiatrist who specializes in noninvasive treatments. He had some new ideas about shoes and padding to protect the spur, and he didn’t seem to think my foot was all that bad. I told him I had always imagined that one day I’d put on a backpack and walk across continents, but lately was starting to give up on the idea.
“You might still make it,” he said. “Just start with a small continent.”