A Halifax mother whose daughter has a neurological disorder that requires $ 65,000 surgery in the U.S. says the province should do more to help families so they can access care.
“It breaks my heart to meet patients across Canada who have to re-mortgage their homes,” said Paula Cameron, whose eight-year-old daughter, Maddy, was diagnosed with U.S.-linked cord syndrome. .
The American Association of Neurological Surgeons describes spinal cord syndrome as “a neurological disorder caused by tissue insertions that limit the movement of the spinal cord within the spine.”
A year and a half ago, Cameron, a senior associate researcher in continuing professional development and medical education at Dalhousie University, said she noticed that Maddy stumbled a lot and had a hard time coping. Symptoms worsened over time, he said.
“We’re at a point where you need a wheelchair for a longer distance and you have significant fatigue,” Cameron said.
Cameron said his pediatrician requested an MRI. It revealed a Chiari malformation: structural defects of the cerebellum. While investigating Chiari malformations, Cameron found that some children with symptomatic formations also had cord syndrome.
Hard to find NS reference
Cameron took his daughter to see neurosurgeons in Nova Scotia. He said nothing appeared in the pictures of Maddy suggesting he had tied cord syndrome.
Unconvinced, Cameron arranged a consultation with Dr. Petra M. Klinge, a Rhode Island neurosurgeon associated with Brown University with experience in the disorder. Klinge diagnosed Maddy with cord syndrome.
The surgery Maddy needs is not available in Canada, Cameron said.
He said that for Maddy to be covered by Nova Scotia Health Insurance (MSI), she would need a referral from Nova Scotia specialists. When he shared Klinge’s diagnosis, he did nothing to help his case.
Specific requirements for MSI coverage
Nova Scotia Health and Wellness said out-of-province referrals are only considered if the area of expertise requested is not available in the province. But with tied cord syndrome, there are resources and experience to diagnose it in Nova Scotia, the department says.
The department said specific criteria must be met for MSI to provide coverage for treatments outside the province.
- There must be a confirmed diagnosis from a Nova Scotia specialist.
- The referral from the Nova Scotia specialist must also be initiated by the specialist who is involved in the patient’s care at the time of referral.
- The medical procedure must be one that is covered by MSI.
“It can be very difficult to find someone to refer you to,” he said.
Cameron is moving forward with the procedure for Maddy in the United States. He is raising money for this on the crowdfunding platform, GoFundMe.
Cameron said Maddy could be having surgery in Providence, RI, as early as September.
“I really hope the surgery regains his energy so he can play like a normal child,” he said. “It’s very difficult to see a child lying in bed next to him, dragged for most of the day.”
“Feeling like a child in the body of an old woman”
In case the surgery was successful, Cameron said it would mean a world of difference for his daughter.
He said he is looking forward to seeing his daughter heal from surgery and finally have a chance to participate in more activities. So far he has raised more than $ 15,000.
“Maddy talks about feeling like a kid in an elderly woman’s body,” Cameron said.
The Glace Bay man was successfully operated on in the US
Kyle MacLean, a 28-year-old from Glace Bay, NS, recently underwent spine surgery for Providence-linked spinal cord syndrome. He said his symptoms began four years ago.
Like Maddy, MacLean’s tied cord did not appear in the images and ended up being diagnosed by Klinge in the United States.
“One of the biggest symptoms is that you can’t lie on your back. The feeling of pulling and the pain is too hard,” MacLean said.
MacLean said he feels so much better from the surgery and that he can finally stretch his back.
“I feel like I can move in a way I couldn’t before, get up more upright. Things like that. I don’t wake up in the middle of the night having to get up five or six times. I don’t have that much tickling in my legs. , so much numbness, ”MacLean said.
“And that’s just the beginning. It could take a few months to enjoy all the benefits of surgery. I still think there’s a lot to improve.”
MacLean said the surgery ended up costing about $ 65,000.
Local experts “would not give you the time of day”
“When you have mine [medical] Memories and all, I’ll go talk to MSI to see if I can get something back, but I don’t have much hope. “
MacLean said local doctors should keep up with the latest science on the disease.
“I spoke to a couple of neurosurgeons in Halifax. I raised it and they didn’t give it the time of day,” he said.