by karenb » Sat Jan 15, 2011 7:51 pm
I personally hate the term - it makes me cringe & feel sick to my stomach.
When I first found out I had SM about 3-1/2 years ago, I tried to do a little on-line research. One of the first articles I came across was from a person who had posted extremely graphic photographs of their surgical scars on-line, and referred to themselves as a "zipperhead". They went on to provide horrifying descriptions about the pain, infections, etc, and said that this was the only option available for treating Syringomyelia.
The images alone gave me nightmares for days - it was months before I found out that I was not a surgical candidate and, regardless, the type of surgery the person had posted on-line isn't even an option for my type of SM.
Karen