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three years ago, Jones was in an accident and even though she did not sustain any major visible injuries, few days after the incident, she began experiencing excruciating pain in her shoulders, head and rest of her body.
“I felt electrical shocks burn their way from my neck to my arms, down my spine into my sacral area, then stretching on to every limb,” she recalled. “Sharp and intense pain in center of my head woke me from my sleep every night. The pain was unbearable and no one knew why.”
Subsequent testing revealed the presence of three rare spinal cord cerebral spinal fluid (CSF) filled cysts. Turns out, Jones had Tarlov Cyst Disease, a rare disorder. The cysts in Jones’ body were responsible for the acute pain and nerve damage. Once someone has Tarlov cyst, traumatic injury such as a fall or an automobile accident can aggravate the symptoms and cause pain.
Further testing brought more bad news. In addition to CSF, the Bramptonian was told she has advanced spine degeneration and aqua ductal stenosis for which she will need brain surgery.
“You get stuck in the pain and you don’t know how to talk to your friend or family about it,” she said. “You withdraw from every one.”
To add to her existing woes, the insurance company rejected her claim by saying Tarlov Cyst Disease does not cause pain and that Jones’ condition was a pre-existing one. The insurance company opted to quote an early and outdated research conducted in 1938 on Tarlov Cyst Disease which had concluded that the disease do not cause pain in patients, but subsequent findings have debunked the original notion, Jones explained.
In 2011 the Brampton resident underwent a spinal surgery because of which she’s now able to sit without being in pain. Most people watching Jones walk with a cane assume her discomfort is minimal. But, that’s simply not the case.