GLACE BAY, N.S. — His pain is so excruciating that doctors have compared it to what they call “end of life cancer pain.”
Shannon MacLeod, 48, who suffers from adhesive arachnoiditis, sometimes even dreams of dying to stop the agony.
Adhesive arachnoiditis is a rare disorder that affects the middle protective membrane around the spine. There is no cure and it will get worse because it is accumulative.
“The psychological damage is just as bad as the physical damage. I’ve become obsessed with death,” he said. “Where do I want to get buried? Do I want to be buried or cremated? What’s the best way of taking yourself out?”
His mother, Georgette MacLeod, gets upset remembering a conversation they had in early December while sitting in the emergency room at the Cape Breton Regional Hospital.
“There’s a graveyard across the road (from our house). It’s St. Mary’s. We don’t belong to St. Mary’s but he said: ‘Can I be buried there so I can be close to home?’” she said through tears.
Shannon was diagnosed with the debilitating condition in September 2017 but his health issues started in 2005 with a ruptured disc in his back.
Then in 2007, he lost his motor skills and the use of his legs. On his fifth trip to the emergency room at the tegional hospital a doctor recognized it was Guillain–Barré syndrome and Shannon was airlifted to Halifax. It took a year for him to recover and he was admitted to the pain clinic at the regional hospital.
But the pain continued and got worse. In 2014, he was diagnosed with arachnoiditis, which was eventually upgraded to the more serious adhesive arachnoiditis.
“Like a doctor told me, I can’t make this stuff up … I have a damage list that reads off like a grocery list,” he said.
“This year he’s been given more or less a death sentence,” added Krista MacLeod, Shannon’s younger sister.
Although he goes to the pain clinic, Shannon has been without a family doctor since 2009, when his physician relocated. This makes it difficult to get consistent care or appointments with specialists.
Over the years, Shannon has had so many “meet and greet” introductory appointments with physicians that he has lost count. Everyone has refused to take him on as a patient.
First he was told it was because he was being prescribed opioid medications. Then he was told the doctor had no availability even though Shannon had gotten the appointment because they were accepting new patients. Many of these came from being on the provinicial list for people needing a family physician.
“I’m a hot potato. In no way does anyone want to touch me,” Shannon said.
“And I’m not the only one stuck in this sinking ship.”
Shannon thinks doctors are “scared to death” to deal with his case because it is complex, degenerative and he needs opioid pain medication to get through the day.
The College of Physicians and Surgeons of Nova Scotia (CPSNS) is the regulatory body overseeing the practice of medicine in the province. According to their guidelines for accepting new patients, no one should be refuse because they have complex health issues or they have been or are being prescribed opioid medications.
“From the College’s perspective the best and most appropriate way to accept new patients is on a first-come, first-serve basis. The College embraces the principals of non-discrimination that are set out in the Human Rights Act,” said Dr. Gus Grant, registrar and CEO of the College.
“We specifically address that physicians should not discriminate against patients … who have complex or chronic health needs and we specifically say they should not refuse a patient by virtue of having a history of being prescribed opioids or other psychotropic prescriptions … We expect our physicians to be in compliance with our standards and guidelines.”
Greg Boone, spokesperson for the Nova Scotia Health Authority Eastern Zone, said a patient being refused by doctors should contact the College.
“From our perspective, if a patient has experienced a single or even repeated rejections based solely on use of opiate medication, they should follow up directly with the CPSNS in relation to a complaint,” he said in an email statement.
Shannon has not filed any complaints with the College but has contacted patient advocacy groups, his MLA and the department of health in trying to get help.
“I would like it if they would treat people on an individual basis, instead of this blanket and it’s for everyone,” he said, pointing out he often feels judged because of his medication.
One example occurred at the regional hospital emergency room in August. A nurse came out with his file in hand and told him in front of everyone waiting there if he was “here for narcotics you should just leave.”
“They make you feel like a pariah when you go,” said Georgette.
“I would like to see him treated like a person and not have to bury him,” said Krista.
Shannon MacLeod’s Medical History:
2005: Ruptured a disc in his back
May 2006: Put on disability because of pain
Feb. 2007: Started losing motor skills & taste; fifth visit to ER diagnosed with *Guillain–Barré syndrome (GBS), airlifted to Halifax
2007 – 2008: Relearned how to walk as GBS clears, sensation comes back but pain increased.
2009: Started as patient in pain clinic, family doctor relocated.
2009 – 2013: Continued treatment at pain clinic, pain got worse, given numerous spinal taps looking for infection, none found.
2014: MRI shows arachnoiditis, doctor wrongfully said it wasn’t serious and would go away.
2015 – 2016: Shannon learned arachnoiditis is incurable, pain worsened & he continued at pain clinic.
Sept. 2017: Diagnosis changed to **adhesive arachnoiditis, a more severe version of the disorder.
*Guillain–Barré syndrome – condition where the immune system starts attacking the peripheral nervous system.
**Adhesive arachnoiditis – condition affecting middle, protective lining around spine. Nerves should look like spider webs, Shannon’s look like spaghetti.