SYDNEY MINES, N.S.
Renee Smith will always feel raindrops on the right side of her head, even when it isn’t raining.
That’s because of one of the many surgeries she’s had in hopes of recovering from brain injuries sustained after being hit by a drunk driver in 2010.
To date, the Sydney Mines woman has had six surgeries, including one brain and one cranial surgery. All were done in the United States because surgeons who specialize in treating one of her conditions, trigeminal neuralgia (TN), are scarce in Canada.
Renee also has occipital neuralgia, making her case more complex. With her husband, Tim, as her advocate, the two have appealed to specialists across the country. Many have rejected her case because of its complexity.
“We went to Newfoundland and we were told by that doctor’s patient manager (that) I was an excellent candidate and she was sure he would take me on,” said Renee, sitting next to Tim as he held her hand.
“I still had the problems with the occipital neuralgia on both sides and he said: ‘This is too complicated for me. This is too much for me.’ And literally walked out the door. It wasn’t even five minutes. He didn’t even examine me.”
For Renee, the TN makes brushing her teeth or hair excruciating. Flareups feel like electric jolts inside her head, sometimes with the sensation of a stabbing knife as well.
The occipital neuroglia causes pain in the back of the head. She had cranial surgery in San Francisco last March to remove some nerves and muscle on the right side, relieving the pain. But it leaves her with the raindrop feeling and the feeling she has a hole in her head. Renee needs to have this done on the left side as well.
“As the years went by, on to the fifth and sixth year, the TN got worse than any of the other medical issues I had from the accident. It literally started to control every aspect of my life,” Renee said.
Devoted parents of four children, Renee and Tim were at every sporting event and activity their kids had. Now, Tim is her main caregiver and Renee rarely leaves the house, especially in winter.
If Renee can find a specialist in Canada willing to do the surgery, the wait time for the initial assessment is between two to three years, with an additional six month- to two-year wait for the surgery.
“My doctor there (in the U.S.) said expecting me to wait is like waiting to call the fire department after the house is burned down. He’s like, the longer everything keeps misfiring, the longer it will take to fix it and the worse my symptoms will get every year,” Renee said.
“Problem is you can wait two or three years to see the surgeon, but then the surgeon might not even want to touch her,” said Tim.
The wait time to get an appointment with the one surgeon in Halifax who specializes in TN is about 942 days, with an additional 332 days to wait for the surgery.
Renee and Tim have spent more than $400,000 to get the surgeries in the States. To get the last two, it will cost between $150,000-$250,000 plus travel and accommodations. They will also have to pay for child care while they are away.
“I need someone to be here with my kids while we are away. I need someone to take them to their activities,” Renee said.
Renee is going to San Francisco at the end of November for a cold laser treatment that will freeze the nerves. That can give Renee pain relief for three months and costs $3,500 without the extras.
“In total, you are looking at about $10,000,” said Tim.
On Oct. 22, the couple heard from a specialist in Moncton who said he will review Renee’s case. But if he rejects it or the wait time for surgery is a year or more, Renee and Tim have decided to sell their house so they can get the surgeries in the States.
“I try not to focus on it a whole lot because I get angry. I get angry at our system because every doctor that we’ve seen in the United States is like, ‘We’ve always envied your health care.’ They couldn’t actually believe that we couldn’t just call up somebody and go see a neurosurgeon next week,” said Renee.
“I’d say you could probably wait here 20 years and you’d still get nothing done because if it isn’t very simple, they don’t want to touch you,” said Tim.