Syringomyelia Month Awareness:
A time to educate and increase awareness while focusing on support and resources available. An opportunity to connect, talk and learn more about the impact of Syringomyelia.
Patient Story, Caroline Rose Brownell
About two weeks into her life, she started vomiting bile. She would choke shortly after starting to eat. After various studies, she was diagnosed with Nasopharyngeal Reflux, Dysphagia, GERD, and Failure to Thrive. She was also diagnosed in the first year with a Stills heart murmur and Strabismus.
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When she was about 18 months old, she started screaming all night long. She wasn't able to speak so we didn't know what was going on. The pediatrician thought it might be night terrors. We used to wake her up and get her a drink before they usually started to see if that would help. She would still scream in pain at night.
After years of speech therapy, she told us, "the bugs are eating my feet." The doctor ran blood tests and did X-rays and they couldn't find anything. The doctor said she had lax joints and it was just growing pains. He told us to give her ibuprofen before bed. It helped some. She was a very clumsy child and was always falling. She couldn't carry anything and was always tripping. She couldn't hold a pencil or crayon tight enough to color or make an impression. She couldn't jump. She couldn't pedal a bike. She couldn't potty train. She was a bright child but couldn't hold her bladder. We tried everything. She was extremely irritable. She was affected by loud noises and tight clothing. Read Caroline Rose Brownell full story <click here>
Syringomyelia (sear-IN-go-my-EEL-ya) is a disorder in which a cyst forms within the spinal cord. This cyst, called a syrinx, expands and elongates over time, destroying a portion of the spinal cord from its centre and expanding outward. As a syrinx widens it compresses and injures nerve fibres that carry information from the brain to the extremities.