‘I can’t wait any longer’: Brockville mom desperately seeking OHIP’s help in treating debilitating disorder

A Brockville woman living with debilitating pain is looking to travel to Cyprus for what she hopes will be a life-changing surgery, but is facing a number of roadblocks in getting there.

A few months ago, Sadie vanRavenhorst, a 40-year-old mother of two young sons, received the diagnosis of a rare and progressive neurological disease called Tarlov Cyst Disease (TCD), after what she describes to Brockvilleist as “years of being passed around from doctor to doctor, all unable to provide a formal diagnosis.” She says she’s had symptoms of the disease for the last five years, “with the last two years being the most severe and debilitating,” leaving her unable to stand, sit or walk for extended periods of time.

In the New Year, vanRavenhorst will have the opportunity to travel to Cyprus, where world-renowned U.S. neurosurgeon Dr. Frank Feigenbaum practices as part of an international surgical group for those suffering from this disease. But the surgery to treat the cysts on her spine is set to cost a staggering $85,000 out of pocket, plus travel, and vanRavenhorst has learned the hard way that OHIP will not even consider providing financial coverage for such surgeries unless an Ontario neurosurgeon endorses the plan. Unable to get a timely referral or secure an appointment with a neurosurgeon, possibly for several years, she says she’s reached the end of her rope.

Her family doctor has submitted one referral to a neurosurgeon in Kingston, but it was denied by their office. She’s also a patient of the Kingston Orthopaedic Pain Institute, and has “essentially been denied a referral entirely and continues to be referred to other doctors within the clinic,” vanRavenhorst explains.

“I just want the chance to play with my kids again,” she told Brockvilleist. “Instead, I’ve been passed around from doctor to doctor in every field from pain management to gastroenterology, orthopaedics, obstetrics and gynecology – and still no solutions.”

vanRavenhorst believes this rare neurological disorder “is simply not well understood” in Ontario. “The disease, which predominantly impacts women, has gone under-funded and under-researched in Canada, where medicine remains a predominantly male-driven field,” she says.

In search of help, she’s contacted her local Member of Provincial Parliament, Steve Clark, and has sent a letter to Ontario’s Minister of Health, the Hon. Sylvia Jones. She is calling on them directly for their support to secure financial coverage for the surgery.

“In a province like Ontario, no one should face financial ruin to get the care they need. My family is counting on me, and I’m counting on the province of Ontario to step up and do what’s right.”

When reached for comment by Brockvilleist, Clark said he’s working with vanRavenhorst and the Ministry of Health to explore possible options. However, he explained that “primary care physicians and medical specialists control the out-of-country and out-of-province referral and approval system. There is no MPP appeal mechanism, nor is there an ability for MPPs to prioritize a specialist’s wait-list.”

Clark added, “My heart goes out to Ms. vanRavenhorst and her family for everything they’re going through. I will continue to advocate for her to the full extent of my ability as her MPP.”

In the meantime, the clock is ticking.

“I can’t wait any longer,” vanRavenhorst says. “Every day this disease goes untreated, the risk of permanent nerve damage grows. I want to be able to walk by the time I’m 50 years old. I can’t wait around for my condition to become a life sentence – it’s not fair to myself or my family.” 

vanRavenhorst adds that since sharing her story, she’s become aware of four other women in the area who have this same disease, some of whom are not formally diagnosed.

“This is considered a rare disorder, yet I’ve connected with a handful of women in my own area,” she noted. “There must be other women out there suffering in silence.”

For those looking to help, a GoFundMe has been set up to support vanRavenhorst in funding the surgery. As of the morning of Friday, Dec. 13, it’s raised just over $10,000.

Brockvilleist will continue to follow vanRavenhorst’s story, and provide updates as they are made available.