Dwane UnRuh calls it “my Sept. 11.”
On that date in 2017, the 57-year old, Ottawa-based researcher and federal government manager left work feeling a sharp and pervasive pain that seemed to come from deep in his bones. He would not return to the office until 20 months later.
Over time, that deep bone pain gave way to a plethora of other debilitating symptoms. In August 2018, a medical notice from a Nepean, Ont.-based neurologist reported that UnRuh was experiencing “widespread skin sensitivity affecting all surfaces of his skin,” a high-pitched ringing in his ears, dry heaves, nausea and an inability to think clearly.
In addition, UnRuh had developed some motor and verbal ticks. He would unintentionally jerk different limbs and say words like “fiddle” and “skittle” over and over.
He also reported strange headaches that would become more pronounced after standing up for several hours, with pressure at the back of the head, the base of the skull, the forehead and behind his eyes.
“It feels like his brain has weights on it,” the neurologist reported.
UnRuh, whose job involves complex statistical analyses, said that while he was occasionally able to perform basic tasks like getting a few essentials at the grocery store, he became unable to do simple math.
“I went to the store and looked at two items that had different sizes — 12 eggs and 18 eggs. I had no idea how to do the calculation to figure out which was better to buy,” he said.
And that was on a good day. When his symptoms were at their worst, he said, he could do little but lie in bed in the dark to avoid vomiting.
“Otherwise, we’d be cleaning up in the living room,” he said.
Doctors were puzzled by what they were seeing, according to medical evidence reviewed by Global News. Before seeing the Nepean-based neurologist, UnRuh estimates he’d already seen eight specialists, including a rheumatologist, a gastroenterologist, a geneticist and another neurologist who had excluded a neurological cause for his many ailments. And because none of them could tell what was causing his symptoms, UnRuh’s long-term disability (LTD) insurance claim was denied.
“We understand that you may be experiencing some health concerns. However … the information we have does not confirm that your health prevents you from performing your own occupation,” Sun Life Financial, his employer’s insurance company, wrote in a letter viewed by Global News.
UnRuh, who still has one of three children living at home, was left with no income at a period when his wife also had to take some time off work after being diagnosed with breast cancer.
His own diagnosis wouldn’t come until a year and a half after the start of his ordeal, when the Nepean-based neurologist concluded he had spontaneous intracranial hypotension, a relatively uncommon and often misdiagnosed condition where a patient’s brain “sags” when some of the liquid that normally surrounds it leaks out through the spine, something doctors call a cerebrospinal fluid — or CSF — leak.
Sun Life has since reversed its decision, agreeing to retroactive benefit payments dating back to Dec. 12, 2017, the start of UnRuh’s LTD eligibility period under the plan. The insurer has also committed to partial benefits coverage starting May 30, when UnRuh went back to work part-time after experiencing a marked improvement in his many symptoms following treatment.
“We empathize with Dwane’s situation,” Sun Life said in a statement to Global News.
“Rare and difficult-to-diagnose conditions are a challenge for both the patient and the medical community, which often involves lengthy and complicated processes,” the insurer said. “We base our assessments on the medical evidence we are provided throughout the claims process. We understand the impact disability claims can have on our clients so we continue to review and make adjustments to our processes with the goal of making it easier to come to the right decision as quickly as possible.”
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What can you do when doctors can’t tell what’s wrong?
Carolyn McClanahan, a certified financial planner in Jacksonville, Fla., who has also worked as a physician, said UnRuh’s story is a familiar issue. On the one hand, “one of the problems with medicine, and especially illness that’s not common, is it does often take time to diagnose it,” she said.
On the other hand, “insurance companies operate too much in black and white — they don’t do grey very well,” she said.
Grey is the kind of situation patients like UnRuh find themselves in when working becomes impossible, but all doctors can do is describe — rather than explain — the symptoms.
UnRuh’s neurological ailment remains poorly understood even among neurologists, according to Dr. Linda Gray, a neuroradiologist and associate professor at Duke University who specializes in CSF leaks.
Awareness of the condition has been growing since the mid-2000s, Gray said, but misdiagnoses remain common. She recalled seeing a patient who had been told by 15 neurologists and nine neurosurgeons that he had Alzheimer’s disease when, in fact, he had a CSF leak.
Making things worse, UnRuh’s sagging brain and spinal leak did not show through medical imaging, a key piece of evidence insurers use to evaluate LTD claims.
Intracranial hypotension and spinal leaks can be hard to detect through imaging, Gray said.
“You have to do a very high-resolution immediate scan in order to detect some of the leaks that are present,” she said.
A family doctor can play a pivotal role in these cases, according to McClanahan.
“The first step is to have your doctors write a letter saying: ‘Look, we know something’s going on, but it’s taken time to figure it out,'” McClanahan said.
And if that’s not enough, Step 2 is to work closely with the GP to explain how the lack of disability benefits is impacting your financial situation and see if it’s possible to submit at least a preliminary diagnosis, she added.
If that all fails, “you have to hire a lawyer,” McClanahan said. “I hate to say it, but that’s what you have to do.”
But as the search for a diagnosis and a cure continues, a good primary-care doctor can also be crucial in piecing together the overall picture from your various specialists’ appointments, McClanahan said.
In UnRuh’s case, it was Facebook groups — in addition to his committed family doctor — that helped to solve the puzzle.
UnRuh would lie on the couch — the only position he could be in for long periods of time without developing piercing headaches — and peruse social fora where people with rare or undiagnosed conditions came to compare notes and symptoms.
One day, he found a woman whose experience almost exactly matched his own.
“It was amazing,” he said.
The woman had been diagnosed with a CSF leak, she told him.
From his horizontal position, UnRuh began reading up on the condition.
“My brain would hurt if I tried to concentrate so I would read only a few minutes at a time,” he said.
Eventually, though, UnRuh managed to collect a significant amount of medical literature.
“I went to see my GP with this information, and she was so supportive,” he said.
The family doctor sent him to the Nepean-based neurologist, who would eventually reach the spontaneous intracranial hypotension diagnosis.
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‘We had to count pennies’
UnRuh’s medical and financial odyssey, though, was far from over.
By October of that year, the medical imaging had come back with no helpful hints. In February, a neurologist who independently assessed UnRuh for disability benefits on behalf of Sun Life noted that “investigations have failed to confirm a diagnosis of a suspected CSF leak.”
“From a strict physical neurological perspective alone, there are no specific restrictions and limitations that preclude the return to work,” the documents read. “However, I would defer to the appropriate specialist addressing non-neurological issues.”
UnRuh’s own neurologist, though, didn’t give up and ordered an epidural blood patch, which involves injecting blood in the spine in order to prop up a patient’s sagging brain.
The procedure worked immediately, according to UnRuh.
“As I was lying there … everything cleared up, and it was so amazing,” he said. “I was literally in tears. … It just was like awakening back into the world again.”
UnRuh was able to draw another huge sigh of relief when his LTD insurance payments finally came through.
The result of the epidural allowed his neurologist to confirm the brain-sagging diagnosis.
“His wife has made the observation that she has got ‘her husband back,'” reads a doctor’s note dated April 25, 2019.
On July 5, UnRuh received a letter from Sun Life saying the insurance company had reversed its earlier decision and would pay benefits retroactively starting from December 2017.
“It makes such an enormous difference to us,” UnRuh said.
But going a year and a half without benefits was tough, he added. UnRuh and his wife had to “count pennies” and dip into their retirement savings to make ends meet.
UnRuh said he had gained 50 pounds after months of being confined to the couch and eating in an attempt to calm his frequent nausea. But when his neurologist recommended underwater physical therapy as a form of exercise compatible with his positional headache, he found he couldn’t afford it, he said.
“Every moment of every day you’re consumed with your financial situation,” he added.
Still, it could have been worse, UnRuh reckoned.
“We were lucky we weren’t young. It was a hit, financially, but it wasn’t devastating.”
He said he understands why it may be difficult for insurance companies to deal with complex cases like his, but, he added: “It would be nice … if there were a better way of dealing with it at an earlier stage.”