'No quality of life:' Halifax woman with rare disease paying $60,000 for U.S. surgery
There are no specialists in Canada that perform the procedure for those with Tarlov Cyst Disease.
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Leanna MacIsaac, 37, has spent most of the last three years in bed with a condition that until very recently was undiagnosed.
Now she has a diagnosis and a surgical treatment that is likely to help, but her family faces financial ruin for her to get her life back.
Visiting MacIsaac at her Dartmouth home, it’s not hard to tell she’s in pain as she slowly walks across the room with an ice pack to help ease her discomfort.
Her husband, Shaun Ziman, watches anxiously as she winces before sitting down on the sofa to chat.
Just two weeks before their wedding three years ago, a previous disc injury progressed into a loss of function in MacIsaac’s right foot and leg.
It was accompanied by disabling nerve pain that made it difficult for her to sit, stand or walk without severe pain.
MacIsaac had to leave her job as a hospital nurse in Halifax. She underwent numerous tests and saw a variety of healthcare professionals and specialists.
Nothing helped and no one knew seemed to know what was wrong with her.
Three months ago she and her husband welcomed their first child, a son, into the world. Ziman is on parental leave from his job as a police officer so he can tend to the baby and his wife.
“For the most part I’m sitting to breastfeed and it’s pretty painful. Other than that I stay in bed with about 12 pillows under my legs so that I am at a 90 degree angle and have some lift in my pelvis area," MacIsaac said.
"That’s where I stay 95 per cent of the time. That’s how I’ve lived for the last three years and three months.”
Earlier this year a physiotherapist mentioned that her issues were similar to those of another patient who had Tarlov Cyst Disease. MacIsaac began researching the condition.
The relatively rare disease involves cysts that may become enlarged following a disc injury. In addition to severe nerve pain, it can cause diminished functioning and reflexes.
Armed with a possible answer, she was also faced with the knowledge no one in Canada specializes in the condition or performs the required surgery.
Dr. Frank Feigenbaum, a neurosurgeon based in Texas, is a world-renowned specialist in the treatment of Tarlov cysts. He examined MacIsaac’s medical records, including her diagnostic imaging.
He concluded she has seven Tarlov cysts, some of which are eroding the bone on her sacrum and compressing nerves. Surgery has been recommended as soon as possible to prevent further nerve damage.
“I think before I had some kind of a hope it was really overwhelming. I have no quality of life. To try to think of every day spent that way, I just couldn’t fathom that this would actually be my life because there was no life to be had,” MacIsaac said, fighting back tears.
“And for my husband I felt so terrible because we had gotten married and it was just before the wedding that this had happened. I felt so guilty that we got married and then this happened and I was someone to take care of.”
The issue now facing the couple is financial ruin. MacIsaac still carries debt from her nursing education and the cost of the surgery alone is $56,000 that must be paid upfront.
MacIssac’s sister started a GoFundMe fundraising page to try and help ease the burden.
She’s scheduled to have the surgery in Texas on Oct. 25 and already has her flights booked.
“It is overwhelming because I have something that might help me and I can’t afford it and I’m desperate because I don’t want to have further nerve damage and at the same token I feel like I’m putting my family in financial ruin,” MacIsaac said, tears in her eyes.
Ziman said he’s committed to doing whatever he can to help his wife reclaim a normal life. Her dreams include one day being able to return to work.
“We’ll take a loan, use line of credit, credit cards, so be it. She’s only getting worse and it’s not going to get better,” Ziman said.
“So we’re taking matters into our hands.”
So far, almost $9,000 has been raised via the fundraising page.
MacIsaac said she feels “awful” asking for the help, but is glad to use the opportunity to spread some awareness about Tarlov Cyst Disease and the limitations of the health care system for those with rare illnesses.
“I’m really happy to have this out there because the more people that read about it, the more the medical community reads about it, maybe it will help others,” she said.
“I don’t want (it) to be unknown that I’m doing this. I want the government to see that I’ve had to go outside the country to do this. The more people who know about it, they’ll know it really is a problem. I’m not the only one.”