Why was John Silva's chronic pain undiagnosed for so long?

CBC reporter Susana da Silva launches a special series on chronic pain this week with her personal account of her father's struggle. Watch for more stories in the days ahead.

As a reporter, I'm used to telling other people's stories. But now I'm telling my own — or more specifically, my late father's.

Joao (John) Silva was 76 years old, a proud Portuguese-Canadian and former construction worker. I watched his terrible struggle with pain before his difficult death three months ago.

With so many tools at our disposal, why is it so hard to manage pain in our modern medical system?  

The way he died raised so many questions about our medical system's handling of pain, that it compelled me to investigate the issue. With so many tools at our disposal, why is it so hard to manage pain in our modern medical system?

In my father's case, his ordeal began with a mystery illness, a strange pain, that started a few years ago.

He underwent laparoscopic surgery in October of 2010 to have a benign polyp removed. A couple of small incisions were made in his belly, including one near his navel.

He brushed off the mild, infrequent discomfort that followed as a simple upset stomach, and it would go away.

In February of 2013, his health deteriorated rapidly. He came down with pneumonia, and he coughed and coughed. The mild, intermittent abdominal discomfort he'd had a hard time describing became a daily, unrelenting presence.

A man who had worked out at a gym three hours a day, three days a week, was now essentially homebound, barely able to move from his chair. The burning and sensitivity he felt in his belly meant that even the waistband on his pants caused him great pain.

So began a year's worth of tests and visits to doctors to try to figure out what was wrong.

Understandably, when there's discomfort in the abdomen, doctors must rule out all kinds of serious problems such as cancer. So the tests began. My father underwent a slew of them: a colonoscopy (his second in just over a year), a lung biopsy (his second in less than a year), two gastroscopies, two ultrasounds, three chest X-rays, four CT scans of different kinds and a variety of other tests. We also revisited the laparoscopic surgeon, who said he didn't know what could be wrong.

Each time we asked what could be wrong, there was no clear answer. Theories were floated: It could be gastritis, or lymphocytic gastritis, or a bacterial overgrowth in the small intestine or an intolerance to dairy or gluten — the list went on and on.

But no matter what medication was taken or which diet tried, nothing helped. My dad was wasting away. He lost his appetite, 25 pounds and all the conditioning he had worked so hard to achieve at the gym.

In November of 2013, our gastroenterologist said he had no idea what was going on, and that he had no solutions to offer.

An answer, but too late

We took a desperate step. We flew my father to the Mayo Clinic in Minnesota.

It quickly became apparent that they too didn't know what was going on but, in one doctor's report posted online after one of our appointments, there was a brief mention of neuropathic pain.

I began doing my own research, only to discover a series of medical journal articles on neuropathic pain and its relationship to chronic abdominal wall pain. There, in black and white in front of me, were the exact descriptions of all of his symptoms, along with discussions of how the diagnosis is often missed.

I was stunned.

The journals even described a test for neuropathic pain that was developed more than 85 years ago, in 1928: find a patient's sorest point, then ask the patient to do a curl up. If the pain is still present when you press on the sore spot and the patient is curled up, it indicates that the problem is likely on the outside of the abdominal wall, as the tightened abdominal muscles would protect any internal problems.

I tested him myself in the hotel room, over and over again. Sure enough, the pattern of pain seemed to indicate a problem on the abdominal wall itself, and not within.

We then went to the Mayo Clinic's pain clinic. Doctors there conducted the same test and came to the same conclusion I had. They injected lidocaine, a numbing agent, into the sorest point and after a couple of days my father finally had some relief.

We returned home, and looked at getting him into a pain clinic here in B.C., only to learn there were wait times of six to 12 months.

I was left with many questions about chronic pain and how it is managed in Canada.  

It was too long. My father's health was still spiralling downward. In desperation, we made an appointment at a private pain clinic.

Two days before his scheduled appointment, my father was admitted to hospital. A previous lung condition had flared up. It came out of the blue, because we'd been regularly checking to make sure it was not the cause of the pain. All appeared to be fine, at least on the surface, until it roared back.

I believe it was helped along by his chronic, weakened state.

After four days of pleading with hospital staff, we finally got access to a pain specialist. The specialist floored us with what he said "of course" — that my father had a neuropathic pain problem. "It's not rocket science," he said, and he suggested some treatments. But it all came too late.

My father's lungs got worse. He couldn't breathe. Three weeks later, he passed away.

Upon reflecting on what happened, all that I had learned and all the medical journals I had read, I was left with many questions about chronic pain and how it is managed in Canada.

So I started to do what I do everyday, and I began talking with the people who might have some answers. Many times what the experts and the experienced said led simply to more questions about the level of chronic pain care both in B.C., and across the country. 

I soon discovered I wasn't alone in my concern. There are new initiatives underway right now to try to improve chronic pain care, but many experts say they are still large gaps in the system.

My father fell into one.

His unrelieved pain, and our battle to find his help, has left lasting emotional pain for those who loved him, and as yet unanswered questions about why he, and so many others, have to suffer.

Watch for more stories on chronic pain by CBC reporter Susana da Silva in the days ahead.