A mother from Halifax, whose daughter has a neurological disorder requiring $ 65,000 surgery in the United States, says the province needs to do more to help families access care.
“My heart is pounding to meet patients across Canada who have to re-mortgage their homes,” said Paula Cameron, whose eight-year-old daughter, Maddie, was diagnosed with tethering syndrome in the United States.
The American Association of Neurological Surgeons describes attachment cord syndrome as “a neurological disorder caused by tissue attachments that restrict the movement of the spinal cord within the spine.”
A year and a half ago, Cameron, a senior fellow in continuing professional development and medical education at Dalhousie University, said she had noticed that Maddie was stumbling and had difficulty holding things. Symptoms worsened over time, she said.
“We are at a time when she needs a wheelchair for a longer distance and is significantly tired,” Cameron said.
Cameron said her pediatrician had ordered an MRI. He discovered a Chiari malformation – structural defects in the cerebellum. While examining Chiari’s malformations, Cameron found that some children with symptomatic growths also had attachment cord syndrome.
It is difficult to find a recommendation for NS
Cameron took his daughter to neurosurgeons in Nova Scotia. She said there was nothing in Maddie’s images to suggest she had tied-up syndrome.
Unconvinced, Cameron arranged a consultation with Dr. Petra M. Klinge, a neurosurgeon from Rhode Island affiliated with Brown University with experience in the disease. Klinge diagnoses Maddie with tethered syndrome.
The operation Maddie needs is not available in Canada, Cameron said.
She said that in order for Maddie to be covered by Nova Scotia Health Insurance (MSI), she would need a referral from specialists in Nova Scotia. When she shared Klinge’s diagnosis, it didn’t help the case.
Specific MSI coverage requirements are required
Nova Scotia Health and Wellness said references outside the province are only considered if the area of expertise requested is not available in the province. But with ligament syndrome, there are resources and experience to diagnose it in Nova Scotia, the department said.
The department said there are specific criteria that must be met in order for MSI to provide coverage for treatment outside the province.
- There must be a confirmed diagnosis by a specialist from Nova Scotia.
- Referral by a Nova Scotia specialist should also be initiated by the specialist involved in patient care at the time of referral.
- The medical procedure must be one that is covered by MSI.
“It can be really hard to find someone to recommend you,” she said.
Cameron continues the procedure for Maddie in the United States. She raises money for her on the GoFundMe group funding platform.
Maddie could be operated on in Providence, RI, as early as September, Cameron said.
“I really hope that the operation will restore her energy so that she can play like a normal child,” she said. “It’s really hard to see a child in bed next to them, curled up for most of the day.
“I feel like a child in an old woman’s body”
If the operation is successful, Cameron said it would make a big difference to her daughter.
She said she looks forward to seeing her daughter recover from the operation and finally get a chance to participate in more activities. So far, she has raised more than $ 15,000.
“Maddie talks about feeling like a child in an old woman’s body,” Cameron said.
The man from Glace Bay underwent a successful operation in the United States
Kyle McLean, 28, of Glace Bay, NS, recently underwent spinal cord surgery for providence. He said his symptoms began four years ago.
Like Maddie, McLean’s tied cable did not appear in the images, and he was eventually diagnosed by Klinge in the United States.
“One of the bigger symptoms is that you can’t lie on your back. The sensation of pulling and pain is too difficult,” McLean said.
McLean said she felt much better after the operation and could finally lie on her back.
“I feel like I can move in ways I couldn’t stand up before. Such things. I don’t wake up in the middle of the night when I have to get up five or six times. I don’t have so much tingling in my legs, so much tingling, “McLean said.
“And that’s just the beginning. It may take a few months for the full benefits of surgery. I still think a lot of things are yet to improve.”
McLean said the operation ultimately cost about $ 65,000.
Local experts “would not give the time of day”
“When I take it [medical] back records and all, I’ll go talk to MSI and see if I can get something back, but not that much hope. “
McLean said local doctors need to keep up with the latest research on the condition.
“I have spoken to several neurosurgeons in Halifax. I mentioned it and they didn’t want to separate it, “he said.
Add Comment