5 years in the past, after Sadie van Ravenhorst gave start to her second son, she observed some ache in her left foot.
Extra time she felt numbness, however in 2021, the ache began spreading to her left hip and glute space. She was recognized with a torn left hip labrum and had surgical procedure to restore it in August 2022.
Sadly, issues solely went downhill from there.
“After that surgical procedure, I by no means actually absolutely obtained higher,” van Ravenhorst advised Ontario Chronicle Ottawa in an interview at her house in Brockville, Ont.
“By that December (2022), I began to develop main ache in my tailbone space.”
For about 14 months, van Ravenhorst bounced from doctor to doctor going by way of a number of procedures and physiotherapy periods to attempt to work out what was unsuitable.
She obtained an MRI of her tailbone in Kingston however was advised it revealed nothing.
“I used to be primarily advised that there was nothing actually unsuitable with my decrease again. That it was principally simply regular put on and tear from somebody my age,” van Ravenhorst mentioned.
Within the meantime, her ache solely continued to worsen. Unable to sit down, stand or stroll for prolonged durations of time, she was determined for solutions.
“I used to be requesting referrals consistently. I used to be advocating for myself consistently. It virtually felt like I used to be being bounced round from physician to physician and nobody knew what to do with me,” she mentioned.
Earlier this yr, she met along with her OB/GYN, who reviewed the MRI outcomes and mentioned she ought to examine among the findings within the report.
The report disclosed she had a perineural cyst on her S2 nerve root, roughly situated the place the backbone meets the pelvis.
Van Ravenhorst did not discover out about that till August 2024, about 9 months after visiting the MRI clinic.
“Practically all of the signs that I had correlated to this S2 nerve compression,” she mentioned.
Discovering a surgeon
After years of trying to find solutions, she lastly had some course however was now confronted with a brand-new set of hurdles.
Figuring out it was a problem along with her nervous system, she needed to fulfill with a neurosurgeon.
“I’ve requested a referral to a neurosurgeon a number of occasions all through this course of, and I saved being referred elsewhere or I simply could not efficiently get a referral to a neurosurgeon,” she mentioned.
She was once more pressured to take issues into her personal arms, discovering that the surgical procedure she wanted wasn’t carried out in Ontario, which defined why the unique MRI did not increase any alarms.
More and more pissed off with the hurdles of the province’s well being care system, van Ravenhorst discovered Dr. Frank Feigenbaum, a neurosurgeon in Dallas, Texas.
After inspecting her ends in a session, he formally recognized her with Tarlov Cyst illness – a situation the place fluid-filled sacs kind on the backbone. The situation requires surgical procedure that Feigenbaum makes a speciality of.
“He is operated on these cysts for 20 years,” she mentioned. “He is confirmed the analysis that I do have Tarlov Cyst illness, and he is prepared to deal with me. I’m a surgical candidate.”
The surgical procedure would price her over $85,000 Canadian {dollars}, she mentioned.
Beneath the Ontario Well being Insurance coverage Plan (OHIP), some sufferers can get protection for surgical procedures exterior of the nation if they’re referred from a physician within the province.
Van Ravenhorst says she nonetheless hasn’t heard again from a surgeon in Ontario.
“I am unable to even entry a neurosurgeon to endorse me. And that is one of many standards that has to occur,” she mentioned.
“It is my understanding that the precept of well being care in Ontario is accessibility, and but I am unable to entry a neurosurgeon to even presumably endorse me to have this surgical procedure elsewhere.”
These near her have began a GoFundMe.
“I feel that is my solely possibility. There’s nothing out there right here in Ontario,” she mentioned.
In an announcement, the Ministry of Well being says the advice for out-of-country companies is a scientific determination.
“Physicians are accountable for the coordination of well being care for his or her sufferers, this consists of figuring out the urgency of their sufferers’ want for well being companies and referrals to different applicable well being care suppliers and services exterior of the nation. Ought to a doctor determine that their affected person requires medical care that isn’t carried out in Ontario, the Ontario doctor could request funding for out-of-country (OOC) companies through the ministry’s OOC Prior Approval Program.
“OHIP insures medically needed and non-experimental companies offered by physicians for the analysis and remedy of Tarlov Cyst Illness, similar to consultations, and assessments and surgical companies.”
“I hit my breaking level”
After years of her ache rising, van Ravenhorst says she has been pressured to fully alter her way of life.
“About two months in the past, I hit my breaking level,” she mentioned.
“That is once I lastly sought an appointment with Dr. Feigenbaum in america. The ache simply grew to become insufferable. I am having a tough time strolling, getting by way of my day. I could not trick-or-treat with my children this yr.”
She has two sons aged 8 and 5 and is used to being extraordinarily energetic, enjoying pickup hockey recurrently and training her two children’ groups within the Brockville Minor Hockey Affiliation.
She says she even had a possibility to advance her profession not too long ago however wasn’t in a position to pursue it due to her situation.
“I’ve needed to accommodate my work schedule. I am unable to do the issues that I usually used to do at work,” she mentioned.
It has been taxing on her husband Rick too, being pressured to accommodate for her situation over the previous few years.
“We’re simply looking for assist, and we have not. We’ve nowhere to go,” he mentioned.
This story shall be up to date.
