'We have nowhere to go:' Brockville, Ont. woman seeking OHIP coverage for rare nerve disease

Five years ago, after Sadie van Ravenhorst gave birth to her second son, she noticed some pain in her left foot.

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Overtime she felt numbness, but in 2021, the pain started spreading to her left hip and glute area. She was diagnosed with a torn left hip labrum and had surgery to repair it in August 2022.

Unfortunately, things only went downhill from there.

"After that surgery, I never really fully got better," van Ravenhorst told CTV News Ottawa in an interview at her home in Brockville, Ont.

"By that December (2022), I started to develop major pain in my tailbone area."

For about 14 months, van Ravenhorst bounced from physician to physician going through several procedures and physiotherapy sessions to try and figure out what was wrong.

She received an MRI of her tailbone in Kingston but was told it revealed nothing.

"I was essentially told that there was nothing really wrong with my lower back. That it was basically just normal wear and tear from someone my age," van Ravenhorst said.

In the meantime, her pain only continued to get worse. Unable to sit, stand or walk for extended periods of time, she was desperate for answers.

"I was requesting referrals constantly. I was advocating for myself constantly. It almost felt like I was being bounced around from doctor to doctor and no one knew what to do with me," she said.

Earlier this year, she met with her OB/GYN, who reviewed the MRI results and said she should investigate some of the findings in the report.

The report disclosed she had a perineural cyst on her S2 nerve root, roughly located where the spine meets the pelvis.

Van Ravenhorst didn't find out about that until August 2024, about nine months after visiting the MRI clinic.

"Nearly all the symptoms that I had correlated to this S2 nerve compression," she said.

Finding a surgeon

After years of searching for answers, she finally had some direction but was now faced with a brand-new set of hurdles.

Knowing it was an issue with her nervous system, she wanted to meet with a neurosurgeon.

"I have requested a referral to a neurosurgeon multiple times throughout this process, and I kept being referred elsewhere or I just couldn't successfully get a referral to a neurosurgeon," she said.

She was again forced to take matters into her own hands, discovering that the surgery she needed wasn't performed in Ontario, which explained why the original MRI didn't raise any alarms.

Increasingly frustrated with the hurdles of the province's health care system, van Ravenhorst found Dr. Frank Feigenbaum, a neurosurgeon in Dallas, Texas.

After examining her results in a consultation, he formally diagnosed her with Tarlov Cyst disease – a condition where fluid-filled sacs form on the spine. The condition requires surgery that Feigenbaum specializes in. 

"He's operated on these cysts for 20 years," she said. "He's confirmed the diagnosis that I do have Tarlov Cyst disease, and he's willing to treat me. I am a surgical candidate."

The surgery would cost her over $85,000 Canadian dollars, she said.

Under the Ontario Health Insurance Plan (OHIP), some patients can get coverage for surgeries outside of the country if they are referred from a doctor in the province.

Van Ravenhorst says she still hasn't heard back from a surgeon in Ontario.

"I can't even access a neurosurgeon to endorse me. And that's one of the criteria that has to happen," she said.

"It's my understanding that the principle of health care in Ontario is accessibility, and yet I can't access a neurosurgeon to even possibly endorse me to have this surgery elsewhere."

Those close to her have started a GoFundMe.

"I think this is my only option. There's nothing available here in Ontario," she said.

In a statement, the Ministry of Health says the recommendation for out-of-country services is a clinical decision.

"Physicians are responsible for the coordination of health care for their patients, this includes determining the urgency of their patients’ need for health services and referrals to other appropriate health care providers and facilities outside of the country. Should a physician identify that their patient requires medical care that is not performed in Ontario, the Ontario physician may request funding for out-of-country (OOC) services via the ministry’s OOC Prior Approval Program.

"OHIP insures medically necessary and non-experimental services provided by physicians for the diagnosis and treatment of Tarlov Cyst Disease, such as consultations, and assessments and surgical services."

"I hit my breaking point"

After years of her pain increasing, van Ravenhorst says she has been forced to completely alter her lifestyle.

"About two months ago, I hit my breaking point," she said.

"That's when I finally sought an appointment with Dr. Feigenbaum in the United States. The pain just became unbearable. I'm having a hard time walking, getting through my day. I couldn't trick-or-treat with my kids this year."

She has two sons aged 8 and 5 and is used to being extremely active, playing pickup hockey regularly and coaching her two kids' teams in the Brockville Minor Hockey Association.

She says she even had an opportunity to advance her career recently but wasn't able to pursue it because of her condition.

"I've had to accommodate my work schedule. I can't do the things that I normally used to do at work," she said.

It's been taxing on her husband Rick too, being forced to accommodate for her condition over the past few years.

"We're just trying to find help, and we haven't. We have nowhere to go," he said.

This story will be updated.