Hello. This is Robert, the owner of the Canadian Syringomyelia and Chiari Malformation Board.
I was born with spina bifida and hydrocephalus in 1974. The opening in my back was closed shortly after birth and a VP shunt was placed in my head to relieve the pressure on the brain caused by excess fluid, called hydrocephalus. Over a two-year period I had some complications associated with the shunt so the doctor decided to try me without a shunt. That lasted 20 years.
In October of 1993 I woke one morning and couldn't move. It felt as though a huge weight was sitting on top of my chest. I managed to drag myself out of bed and to my college classes. When I returned home later that morning, my mother noticed I wasn't moving well and asked what was wrong, and I told her.
A few days later I was sitting in the orthopedic surgeon's office because at the time I wasn't followed by a neurosurgeon. He put an x-ray of my spine on the board and said that I had a cyst on my spine. A few days later when I saw the neurosurgeon he told me the cyst was in the spinal cord and that I should stop using my arms.
Having used crutches all my life to move around and a wheelchair for long distances, there was no way I was going to stop using my arms. For the next 3 years I would manage my way through the pain and graduate college and eventually obtain full-time employment. But before that could happen the hydrocephalus needed to be taken care of.
In February 1997, I was home when I felt a 'pop' in my spine and then severe pain throughout my back. That lasted about an hour and then disappeared. The next morning I went to lift my head and felt a massive amount of pressure in it. I knew what was wrong, but my parents had gone away for the weekend and my siblings didn't want to rush to the hospital. For 2 days I laid in bed unable to move.
When my parents came home they rushed me to the hospital and the shunt was placed in my head. The neurosurgeon felt this would also collapse the the cyst (known as a syrinx) in the spine. That didn't happen. Two years later I had another surgery to place a shunt in the spine to collapse it. Unfortunately, the syrinx didn't fully collapse and now I have 2 syrinxes.
After researching syringomyelia I found that it is also associated with chiari malformation, particularly those born with spina bifida. Unforunately I haven't been able to find a surgeon who believes the chiari malformation is a concern even though I have all the symptoms listed in the 'Symptoms' area of this messageboard.
It is a hope of mine that others with these conditions will post their story and that surgeons will read them and someone will get the help they need.
Robert