What is Syringomyelia?

Syringomyelia /sɪˌrɪŋɡɵmaɪˈiːliə/ is a generic term referring to a disorder in which a cyst or cavity forms within the spinal cord. This cyst, called a syrinx, can expand and elongate over time, destroying the spinal cord. The damage may result in pain, paralysis, weakness, and stiffness in the back, shoulders, and extremities. Syringomyelia may also cause a loss of the ability to feel extremes of hot or cold, especially in the hands. The disorder generally leads to a cape-like loss of pain and temperature sensation along the back and arms. Each patient experiences a different combination of symptoms. These symptoms typically vary depending on the extent and, often more critically, to the location of the syrinx within the spinal cord.

Syringomyelia has a prevalence estimated at 8.4 cases per 100,000 people, with symptoms usually beginning in young adulthood. Signs of the disorder tend to develop slowly, although sudden onset may occur with coughing, straining, or myelopathy. 

My Mother's Story

Fearless, Passionate, Loving and Larger than Life, describes my mother, all in the same order. My Gorgeous mum was born on 17th May 1963 in a small town in Jammu and Kashmir. But that doesn't matter because later she married my father, an Army Man and traveled all across the country with him. 

My mother, known as Sneh (English meaning: Love) belongs to an X-Large family. X-large or XX-Large, I guess. I am saying this because they are all 7 siblings, all sisters and one brother. Mumma was a tom boy in her childhood. She was a theater artist in her college days, when theater was a term known to few in India. She Played badminton at the state level and always aspired to be a son in the family. But her destiny was planned like all of us and she met my father, a young, handsome newly commissioned Army Officer in the year 1985. It was November she says, and her elder sister and her husband who happened to be the armed forces too were the reason why and how my parents met. 

It wasn't a love at first sight for her (even though my father was floored seeing her at a gurudware: the Sikh holy temple for the very first time). This is also a reason why all SIKH festivals are celebrated with great elan in our family even though we are Hindus. So her elder sister convinced her to marry my father, because they thought he was a good match (how dating never existed in those times) and she said YES. They were soon engaged and then this lady agreed to go out with him. 

On 3rd May 1986, they married each other, exchanged vows and have been together ever since. It was all perfect until 2009. I faintly remember, I was all set to join my new university right after school and had moved to Delhi to join my elder sister who was completing her post graduation in the same university. We never knew that one day, a call from daddy would change our lives like it did. Daddy was strong and he told us, there was nothing, the doctors told mumma that she needed to undergo a brain surgery- LIKE WHAT?!

And then my parents moved to Delhi only to discover that my beautiful mother was diagnosed with Syringomyelia CPM type II. She underwent 2 brain surgeries ever since and is battling it out every single day.

This blog is dedicated to my mother, she has survived 2 brain surgeries, partial paralysis attack, has fixated neck (insertion of 2 platinum screws in her neck) and is a part of battle we didn't choose. 

Join us to spread awareness on this lesser known disorder Syringomyelia. If you know anyone with this disorder or would like to share a story, please feel free to write to us.