It's not easy to say which “one in a” Elizabeth Caplan is.
She might be one in 100,000. Or maybe 20,000. Or maybe 80,000.
For Caplan herself, it's not about proving which statistic she is. It's about telling what happens when you are the “one” who has a stroke during a visit to the chiropractor.
“I think the tragedy of this has been that people like me are silenced, for the most part, if they're alive, or they're relegated to some invented statistic of it being so one-in-a-million that it's not worth empirically documenting,” Caplan said.
Each year, thousands of people go to chiropractors, seeking pain relief that doesn't involve pharmaceutical drugs.
And each year, an unknown and hotly debated number of people have strokes as a result of injury suffered while getting their necks cracked, also known as manipulation of the cervical spine.
Life changes in an instant
At first, there was a gray haze, and then she went blind.
Caplan lay disoriented on the table after the neck adjustment. The room was spinning. And soon, the retired nurse practitioner realized she was having a stroke.
“Of course, there's the shock because nobody thinks (at) 44, ‘I'm having a stroke,' let alone here on the chiropractic table,” Caplan said.
The type of stroke that Caplan experienced in October 2010 while at the chiropractor is not something that's easy to quantify. There is no official estimate from any one entity, but the issue has been studied in several medical journals.
Caplan said she suffered a stroke as a result of vertebral arterial dissection, which occurs when blood enters the wall of the vertebral artery, usually through a small tear in its innermost coat, according to Dartmouth Medical School and U.S. National Library of Medicine.
Research published in 2008 in the European Spine Journal found that vertebral artery dissection is overall a rare event, and the increased risks of these types of stroke associated with chiropractic and primary care physician visits “is likely due to patients with headache and neck pain from VBA dissection seeking care before their stroke.”
But a journal article published in 2008 in a Korean neurosurgical journal quoted the likelihood of spinal manipulations causing stroke to be 1 in 20,000.
Dr. Bill Kinsinger has spent 23 years arguing that the risk is too high, regardless of what it is.
Since 1989, the Oklahoma City anesthesiologist has worked as what he calls a victim's advocate and, at one time, ran the website Neck911USA.com.
Kinsinger has traveled across North America, advocating for legislation that would require chiropractors to provide informed consent before performing cervical spine manipulation.
“Informed consent meaning — when they're going to twist somebody's neck, that they tell them not only of the benefits, of which, in my opinion, there are virtually none to twisting the neck,” Kinsinger said. “And without question let them know there is a risk of stroke and potentially death before they twist their neck. That's the first thing I want, and I don't think that's asking too much.”
There's good evidence that the manipulation of the lower back that chiropractors provide, under certain criteria, could have benefits, Kinsinger said.
“I wish they would decide what they want to be is back pain specialists. If they did that ... I would not only back off my crusade against them — I would endorse them because that's something they could do,” Kinsinger said.
Is there a real risk?
Dorothy Cloutet, of Edmond, has been going to a chiropractor on and off since she was 18.
Cloutet suffers from temporomandibular joint dysfunction, or TMJ, which causes jaw pain. She has found relief in her jaw because of the treatment her chiropractor has provided her.
Over the past 30 years, Cloutet has learned that, just like with anything, the quality of care sometimes depends on the chiropractor.
“There are good ones, and there are bad ones,” Cloutet said. “Once you find a good one, which I feel I have, it's very beneficial.”
Some estimates show that between 5 and 10 percent of a primary care physician's patient load relates to musculoskeletal conditions that would be treatable through chiropractic care, said chiropractor and professor Stephen M. Perle.
Perle said more hospitals and community health organizations are beginning to hire chiropractors.
Perle, a clinical science professor at the University of Bridgeport in Connecticut, said although the anecdotes of stroke are compelling and it's horrible for that person, health care must be based on evidence-based practices.
“It is possible that manipulation does cause strokes, but we just don't have that evidence,” Perle said. “All the biomechanics research says that the amount of force that's applied to the vertebral arteries, which is supposedly the problem, is much less during manipulation than what happens to people in day-to-day living. Drive a car, back your car up, don't use your rearview mirror, turn your neck around to go look out the back window, and you've created more force on the artery than a chiropractor will.”
Perle said if he had unlimited resources and grant money to end this debate, he would gather 20 million people for a randomized clinical trial, the “gold standard” in research, on the likelihood of stroke under chiropractic care.
“I would put 10 million of them into a group that got cervical manipulation, and I would put 10 million of them into a group that got a sham procedure that looks like cervical manipulation but isn't, and then I'd look and see whether they had strokes,” Perle said.
“Now the question is, is the problem so great we would expend the kind of resources to put 20 million people into a research study?”
Before the accident, Caplan, an Oklahoma City resident, had taught special education courses and courses for people who are blind. She had served as a linguist in the Army and knew several languages, including Somali, Hebrew, Arabic, Russian, Spanish and sign language.
She remains blind in her right eye and has trouble recalling what she learned earning her master's degree.
“At 44, everything that I worked for and earned is now gone, and I'm essentially starting over,” Caplan said.
Caplan does not blame a specific chiropractor for what happened but rather the practice of spinal manipulation for neck pain.
“The problem doesn't lie with the actual practitioner,” Caplan said. “The risk of stroke, a vertebral dissection, is intrinsic to the procedure. It's not that one person in the hands of one who's more skillful can avoid causing it.”
Tim Young, the Oklahoma Chiropractors' Association president, has been a chiropractor for 18 years and said he has not had a patient ever experience stroke.
One of the symptoms of stroke is sudden severe headache with no known cause, according to the National Institute of Neurological Disorders and Stroke.
Young said people who have strokes after getting their neck adjusted could have been in the early signs of stroke when they were adjusted.
If a person goes to a medical doctor for a migraine, gets medication and later has a stroke, no one blames the medical doctor, Young said.
“If they go to their chiropractor with neck pain or headache, and the chiropractor sees them and adjusts them, and they leave and have a stroke, ‘It must have been the chiropractor,'” he said.