A 32-year-old Bowmanville woman says multiple hospitals in the Greater Toronto Area and beyond have denied her treatment for her brain condition, which causes her to feel sick, dizzy, and sometimes, to black out.
Lindsey Martin claims specialists from St. Michael’s Hospital, Northumberland Hills, and Lakeridge Health have not given her a solution, and she is pushing for better health care. “I feel like I’m stuck in the health-care system because nobody is doing anything for me,” she said.
Results from her recent MRI tests indicate she has tonsillar ectopia, which the National Organization of Rare Diseases says affects the cerebellum, the part of the brain that “plays a role in maintaining balance and posture as well as co-ordinating voluntary movements.” When the cerebellar tonsils push through the normal opening where the brain and spinal cord meet, they block the proper flow of fluid between the skull and the spinal cord. This condition is sometimes also known as Chiari Malformation.
“I can’t go to my children’s hockey. I can’t go to dance. I can’t drive anymore,” said Martin.
She says doctors have given her anti-depressants and anxiety pills, which are ineffective.
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Decompression surgery, which relieves pressure and reduces compression on the brainstem, is the most common type of treatment for this, but Martin says she has never been offered this option.
The founder of the Canadian Chiari Association, Janet Hussey, says she has heard many people with the condition complain they had been denied treatment for years. “What I’m pushing for is a neurosurgeon to actually take [Martin] seriously,” said Hussey, who also suffers from tonsillar ectopia.
Global News reached out to each of the hospitals, and spokespeople from Lakeridge Health and Northumberland Hills say they can’t comment on specific cases for privacy reasons, but they suggest that Martin should contact their patient-relations teams about her concerns. St. Michael’s Hospital has not yet given Global News an official statement.
Martin says she hopes a specialist will come forward with a solution for her. “I need answers… and help,” said Martin.
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