SaltWire E-Edition

Community rallies for man with mysterious illness

EMILIE CHIASSON

Dan Ross's life was going along smoothly.

The Antigonish County man had a happy marriage, awesome kids, was physically fit, ran a successful business, had great friends and was a respected member of his community. Ross is gregarious, athletic and an all-around great guy.

He started his business, Ross Screenprint Ltd., when he was 16, and after years of working extremely hard, he was finally able to have some time for play — which included motorcycling and skiing.

Then, on Jan. 9, 2020, there was a big dump of snow in Nova Scotia. Dan decided to play hooky from work. He took his youngest son out of school for the day and they hit the road for Wentworth, where they have a cabin and season passes at the ski hill.

That day, while doing a spinning trick on rail in the freestyle park, his foot caught and threw him down on his head. He saw stars and had a headache for the first time in his life — he didn't feel great, but not bad enough to keep him from skiing for the rest of the day.

The next week, he went on a ski trip to British Columbia with his wife and another couple. While there, British Columbia got hammered with what he described as “the best snow ever” — they did a ton of skiing. While doing a cliff jump into fresh powder, he made an error that caused the snow he was on to form a mini avalanche, known as "sluffing out," causing him to go off the side of the cliff. He had what he described as a "stiff landing" when he found ground again.

It jolted his body. When he got to the bottom of the hill, he got sick to his stomach, which he attributed to being scared. He says it was one of the first times in his life he felt scared.

For the rest of that week, though, he felt "off." It wasn't enough to stop him from having a great time, but in the weeks that followed, he started to feel unwell.

MYSTERIOUS ILLNESS

He was tired — not his usual get-up-and-go self. His pace wasn't as good on his morning runs and, after he ran, he felt incredibly lethargic.

His symptoms coincided with the beginning of COVID, so he couldn't see his doctor in person. After a phone consult, he was put on antibiotics, thinking he had an infection of some sort. Two weeks later, there was no change. They tried stronger antibiotics, but another two weeks and no change, except he was feeling worse.

At this point, he had a sore throat, his ears were full of fluid and ringing, had a stiff neck but no pain, brain fog — nothing that caused big alarm bells to go off. A bunch of random things.

His doc thought maybe he had a virus and brought him into the hospital for some tests. Everything came back normal.

Time kept slipping by and his symptoms worsened.

Extreme chronic fatigue set in. He went from sleeping six hours a night to 18 hours a day.

At the same time, to add fuel to the fire, COVID had all but obliterated his screenprinting business — with sports, conferences and festivals all being cancelled, business was down 91 per cent.

June arrived. He saw an ENT doctor, who said there was nothing wrong with his ears, nose or throat, but he thought Ross might have sinusitis and told him to go to his dentist as his teeth looked close to his sinuses — he thought there might be an infection.

WORSENING SYMPTOMS

While on a morning run in July, Ross started wheezing. Fluid bubbled in the back of his throat and he felt pressure in his neck.

He asked his running buddy if they were running too fast as he couldn't catch his breath. When he turned his head, his neck locked, and he couldn't breathe.

After catching his breath, he ran home to take some Benadryl. His wife, Shauna, came downstairs and asked him what was going on.

When he tried to reply, he started slurring his words.

They rushed to the ER. More tests were done. Every result showed he was a normal, healthy guy.

Oddly, after that day, his chronic fatigue fully lifted, and he went back to sleeping a normal amount.

The fatigue, however, was replaced with drop attacks. If he was standing for too long, he would suddenly fall to the floor.

More appointments. More tests. They all came back normal.

POSSIBLE ANSWER?

After doing some research online, Dan figured he had a CS fluid leak based on his symptoms.

Basically, your brain slumps

down and suppression occurs, causing fluid in your spine to leak out.

He made a video of his symptoms and shared it on an online doctor's forum. A doctor from British Columbia contacted him and told him to put a rigid neck brace on and see if he could sit up without getting a headache or the barrage of other symptoms he was experiencing when upright.

Amazingly, his symptoms lessened — he could sit up, felt comparatively fantastic and went from bedridden to moving around with relative ease.

The doctor told him he should look into Cranial Cervical Instability (not what he had previously suspected — this condition involves the ligaments in upper spine).

"If you have it, it isn't treated in Canada," the doctor added.

Ross started connecting with other people online who had been through the exact same journey as him.

The hard collar helped for a while, but he slowly reverted to four hours maximum of sitting up per day.

His business, at this point, was complete insanity. COVID had slowed everything and then a slingshot effect happened in the fall. He had two very pregnant employees and others were overworked.

Since he couldn't stand, he rigged his computer so he could work laying down, hanging above a bed in his office.

TRYING TO COPE

Ross started having new symptoms: spastic flailing of his arms, pins and needles, racing heart, muscle spasms, eventually seizures.

On Dec. 28, 2020, he saw a neurologist who told him to get a second opinion because they didn't know what was wrong with him. After waiting another four months to see the second neurologist, a day before his appointment, he received a call to say it was cancelled due to COVID.

In January, Ross had applied to be seen by one of the three doctors in North America who treat CCI. Dr. Paolo Bolognese in New York — he calls him Dr. Meat Sauce — agreed to screen Ross.

As he suspected, Dr. Bolognese believed Ross had CCI — he has 20 of the 22 symptoms — and although he couldn't officially diagnose him without seeing him in person, he believed he needed surgery. They set a date of Sept. 22.

Finally, some answers and hopefully a solution to this nightmare.

The problem? As a Canadian, and without insurance, it would cost roughly $300,000 for the first surgery, and Ross will need a followup procedure as well. For MSI to cover the costs, he needed a referral and diagnosis from a Canadian neurologist.

In a last-ditch effort, Ross made a public callout for help getting a diagnosis from a neurologist in Nova Scotia. It didn't happen in time.

If he was going to have the surgery in September, he would need to fund it on his own as time was running out. As each day passed, he worried about long-term damage and even death.

Ross stopped his plight with the healthcare system and moved on to figuring out how they could come up with the money.

COMMUNITY SUPPORT

Ross grew up and still lives in Arisaig, Antigonish County. Arisaig has an incredibly strong sense of community and residents wanted to help him out, as he is a guy who has always helped others. When the community board asked him how much money he needed, his response was, "too much."

What unfolded over the next few months will restore your belief in humanity.

A Gofundme, with a goal of $125,000, was started.

When it reached $127,000, in just a few days, Ross asked his sister to shut it down, but donations kept coming in to the email associated with the fundraiser.

Ross shut down the email address so people couldn't send more.

Envelopes with anonymous donations began arriving in his mailbox. There were knocks on his door with donations, a benefit concert, motorcycle friends donated, priests he knew gave money, a 17-year-old cousin sold Donuts for Dan and raised $1,800 in two days.

Roughly 1,200 people have donated enough money to cover all the costs associated with his surgeries and travel.

In tears, Ross says, "I will tell you if you ever have to ask for help — be careful. Wow. I can't even process this."

His wife is a photographer, and other photographers shot weddings for her. A local mechanic teamed up with a carpenter friend and designed, welded, and painted a bed for the van Ross rode in to New York.

While they are away, their kids and dog are taken care of. Everything is taken care of.

“I could write a Chicken Soup for the Soul book. For all the bad things that are happening in the world and how much havoc COVID has caused. When you feel frustrated and feel mad at humanity — just think of this story," Ross says.

ROAD TO RECOVERY

They hit the road Sept. 18 and arrived in New York the following evening. One of his American motorcycle pals met them at the border and guided them to their destination.

Tuesday, Dan had his first appointment in a place called Great Neck. The hospital where he will have his surgery is in Lake Success.

On Wednesday he had a highly specialized spinal fusion, followed by eight days of recovery before they can head home.

If the surgery is successful, his symptoms should dissipate immediately.

He can't wait to be a dad again. To take pressure off his wife Shauna. To have fun. To just live.

The support given is carrying him and his family through this. They can feel it everywhere they go.

A comment on Facebook, as they departed Nova Scotia, said, "Dan, the entire town is rooting for you."

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2021-09-23T07:00:00.0000000Z

2021-09-23T07:00:00.0000000Z

https://saltwire.pressreader.com/article/281565178904458

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