Excerpted from "When the Pain Never Goes Away," Stroke Connection Magazine September/October 2003
Treatment for central pain syndrome (CPS) has varying degrees of success. Some are able to manage it with medications, generally anti-convulsants and anti-depressants. But finding the right medication regimen takes time.
Dr. Swift explained that pain treatment is progressive. It starts with common analgesic drugs like ibuprofen. He adds “tricyclic anti-depressants, which are cheap, safe and effective.” Depending on how effective these methods are, treatment may progress through increasingly strong analgesics and possibly up to narcotics.
“Narcotics are the best drugs for pain because they bind to pain receptors specifically. Narcotic analgesics like morphine, methadone and heroin are very effective. If it gets where you’re taking too much, you can get an implantable pump. Because you are putting the drug right in the spine, you can use tiny amounts that just affect the nervous system, so you don’t get a lot of the side effects that you get when taking it orally or by injection.”
The absolute last resort is neurosurgery, such as deep brain stimulation where an electrode is implanted and sends stimulation to the pain receptors.
Robert has a morphine pump implanted and credits it with saving his life: “The pump is a gift from heaven to me. It takes the edge off, but I still have great pain.”
Finding the right doctor is crucial. Some find the right one on their first neurologist visit. Others have to go through many before finding the one who believes them and begins the treatment process. For Robert, Dr. Swift played an important role, eventually authorizing the morphine pump.
“I am a strong believer in the doctor-patient relationship,” says Dr. Swift, who retired as the chairman of the department of neurology at the Medical College of Georgia. “When a patient goes to a doctor, good things can happen. But if you go to a ‘program,’ I’m not sure good things can happen. Whose responsibility is the patient’s pain at the end of the day? The doctor-patient relationship is really an amazing thing. In it the doctor takes full responsibility for the welfare of the patient.”
So how does a patient find such a doctor, one who is best suited to treating this horrific pain from stroke?
“Some patients have difficulty choosing doctors,” Dr. Swift says. “Sometimes they see one just because they can get an appointment. I would advise them to look in Best Doctors in America and find a doctor that is board certified in neurology, anesthesiology or physical medicine and rehabilitation. Most important is a doctor who takes you seriously and will be available when you need help.”
The Need for Research
There are no solid statistics for central pain syndrome (CPS). In a recent online survey by the American Stroke Association, nine percent of respondents reported they had CPS. We simply don’t know how common it is. Those who suffer from it are often dismissed as making it up or exaggerating it.
Dr. McHenry says that people with central pain need to unite and advocate for pain research. “Living with central pain is like living in a kind of Auschwitz. You are tortured constantly. No on in America would allow people to go to a place like Auschwitz ever again. If they knew the reality of the lives of central pain sufferers, they would not allow it.”