Since being diagnosed with lymphedema more than three years ago, Laura Johnston has been turned away by family doctors and specialists so many times that she assumed treatment wasn’t possible in Nova Scotia.
Johnston, 40, has painful swelling in her right arm that requires her to wear a compression stocking 24/7. She said her symptoms started in May 2021, following treatment with an IV that she says instantly caused discomfort and pain.
“I literally walked out of that hospital and my life has been drastically, drastically changed since. And it’s just been literally one door after the other of just begging people to listen to me,” said Johnston.
Her experience comes more than a year after Jennifer Brady and Crystal Ellingsen’s court win prompted an apology from Premier Tim Houston for the runaround and repeated denials they faced trying to access care for lymphedema and lipedema.
Houston said at the time, “no Nova Scotian should have to go through what they went through,” and he asked the auditor general to conduct a review, which is currently underway.
After a six year fight for her life, a Nova Scotia woman was finally able to get out-of-province lymphedema surgery. For The National, CBC’s Angela MacIvor follows Jennifer Brady’s journey from living with chronic pain to finding new hope in a New Jersey hospital.
As an esthetician who runs her own business in Mount Uniacke, N.S., Johnston struggles to use her arm for hours each day. Since her diagnosis, she hasn’t been able to secure any further details about how to treat the condition.
A special MRI called a lymphoscintigraphy, a nuclear medicine imaging test, could offer the insight she needs. But first, she needs an examination from a specialist — a position she didn’t think existed in the province.
This fall, she had a sliver of hope after MSI, the medical insurer for Nova Scotia, sent a reply to her request for out-of-province care.
“The Department of Health and Wellness has confirmed that within Nova Scotia, the Central Zone Plastic Surgery group at the QEII Health Sciences Centre is accepting referrals for patients with lymphedema,” said an MSI letter to Johnston dated Oct. 30.
She said she followed the required steps and had a primary-care provider send a referral through the Central Referral Platform — three times — but was still denied.
One letter from a plastic surgeon’s office dated Nov. 5 was sent back to Johnston with a handwritten note saying “we do not treat lymphedema. Please redirect.”
A refusal on Oct. 31 stated lymphedema is not something the doctor treats, while another denial on Oct. 30 had questions for the patient.
“To my knowledge, there is no plastic surgeon in QEII Central Zone accepting referrals for lymphedema. May I ask where this information has come from?” the administrative assistant said in an email.
The internal confusion has only left Johnston feeling more frustrated and desperate.
“Every email I’ve sent, I’ve made it very clear, just give me the name of the person. Nobody can give me the name of a doctor,” said Johnston.
Nova Scotia Health and the minister of Health and Wellness confirm care for lymphedema patients is available. However, officials will not confirm to CBC News which doctors are providing treatment.
The health authority said in a statement Monday that doctors only perform immediate lymphatic reconstruction surgeries in certain cancer cases to help prevent lymphedema from developing.
“While referrals are being made to plastic surgeons for certain types of lymphedema treatment, not all procedures can be offered here,” wrote Jennifer Lewandowski, spokesperson for Nova Scotia Health.
“Some treatments are available within the province, but more complex surgical options are not currently provided, which means specialists may not be able to take on every referral depending on their expertise or capacity.”
The health authority did not make anyone available for an interview.
A Nova Scotia-based specialist providing treatment for lymphedema is a quiet update to the level of care being provided in the province since Brady and Ellingsen’s court win in October 2024. A judge ruled that decisions made by the province to deny their care, including the requirement of a Nova Scotia specialist that didn’t exist at the time, were “unreasonable.”
Johnston said she believed the case, and Brady’s breakthrough in public awareness for lymphedema care in particular would “break the boundaries,” but that hasn’t turned into reality.
“It’s been a journey back and forth. Every time it seems that they write me back, it’s kind of the same thing written in a different way but essentially ‘you need a specialist.’”
Michelle Thompson, minister of Health and Wellness, insists that not “all care looks exactly the same for all patients.”
“I would say what’s changed in the last year is really working with patients more collaboratively,” Thompson said.
“We know that because the expertise is not strong in Nova Scotia that we need to build that.”
Minister Thompson said her department is working with Doctors Nova Scotia and the Lymphedema Association of Nova Scotia to “understand the clinical pathways that are best suited for individuals.”
Sarah Brownlow During, a board member of the Lymphedema Association of Nova Scotia and Johnston’s massage therapist, said meetings have been underway for the last year without much progress.
“The intent is there and we can certainly tell that the government wants to help find ways to create solutions or opportunities for people with lymphedema in this province,” said Brownlow During.
“But there’s just so much work on education and awareness and understanding the significant need that exists that I don’t think we’re as close as most of us would like it to be.”
She said it was a surprise to her that Johnston received a letter stating plastic surgeons are now accepting lymphedema patients, since she’s been trying to help Johnston navigate medical care while simultaneously communicating with the department in an advocacy role.
Brownlow During calls it a “big disconnect.”
“I think it also reflects that they want to help and they want to find solutions, but obviously one hand’s not talking to the other hand as clearly as they should be,” she said.
Although Brownlow During does manual lymphatic drainage — a specialized massage technique on Johnston every three weeks — she’s aware it only provides temporary relief.
“I think diagnostics would certainly help in her situation,” she said. “There are ways to determine how much of it is the actual lymphatic system that is the problem.”
She said the doctor who diagnosed her with lymphedema isn’t a specialist, which is required to receive out-of-province care.
“You need a specialist to say that it’s lymphedema, and that’s part of her problem. We’ve seen this with other cases as well,” said Brownlow During.
Johnston doesn’t understand why officials won’t clearly outline what care is available.
In the latest email from the Department of Health and Wellness, Johnston was told her file is being reviewed and she was asked to remain patient.
“You just feel like nobody’s listening or nobody cares and they keep putting it back on me,” she said.
“I’ve done the research, I found the places, but I’m still not getting anywhere.”
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