Syringomyelia is a generic term used to describe a disorder in which a fluid-filled cyst forms within your spinal cord. This cyst is called a syrinx It can expand and elongate over time, destroying the spinal cord.
My syrinx was caused due to the trauma of my spinal cord injury. Only 1 - 4 % of spinal cord injured patients develop a syrinx following their injury. Syrinx can take months and even years to form.
There are many signs and symptoms that can alert your physicians of a possible syrinx. I will share what mine were.
The first thing that I noticed was that my hands started getting weaker, my nerve pain worsened, I was having horrific headaches, my hands got very sensitive to touch, and I could not tolerate touching anything cold.
I was scheduled to have a MRI done to confirm what the doctors had suspected. I had a syrinx that was growing (enlarging) rapidly. I was immediately referred to a Neurosurgeon and was scheduled to have a Subarachnoid shunt placed at the level of my original injury, C6/C7.
I had my first syrinx surgery in March of 2003. The Neurosurgeon made about an eight inch incision on the back of my neck, and then placed the shunt into the syrinx. I was in the hospital for one week, and it took a few weeks before I was fully recovered from my surgery. Then about two months later I started having the same symptoms that I originally had, but was told I was still healing from surgery. My surgeon had actually moved out of state and so I went back to my rehab doctor. After another month passed I knew something wasn't right and so I drove myself to the ER where after another mri was done, it was confirmed that my syrinx had started to grow again. The reason was due to severe scarring over the shunt that had occurred after my first surgery.
the shunt was then blocked from draining and caused the syrinx to start growing. This problem happened a couple of more times and I had this same painful surgery a total of four times between March 2003, and June 2004.
There is no cure for this problem and a shunt placement surgery only has a 50/50 chance of correcting this problem. This shunt can slow down the progression of this disorder with about 50% of patients showing significant improvement. This is a temporary fix because the average shunt life is only five years, because the shunt can get blocked or clogged with small particles.
The decision to use a shunt requires extensive discussion between your doctor and yourself, as this procedure carries with it greater risk of injury to the spinal cord, infection, hemorrhage, and may not necessarily work for all patients.
Here are a couple of links to research Syringomyelia: