Silas,
Lori is the syrinx expert but me and Dan also have them. Ive had mine for
about 4 years.
Basically its complicated yet simple, you either leave it alone and monitor
the pain, or you find an expert to collapse the syrinx or put a shunt valve in.
I talked with Craig Hospital in Englewood, Colorodo....they agreed to
collapse the syrinx but wouldnt take United Heathcare.....price was 50,000. i
had one doc in St. Louis that would do it but he was unexperienced and he would
only perform shunt surgery to drain it.
All my other docs said the risk was too great to perform surgery on a quad
because sometimes you can lose a few levels of function during the surgery. I
was also told that most neurosurgeons wont operate unless you report lose of
function. Pain isnt a reason for surgery they say.......but that is
crazy!!!!!!!!
The risk of functional loss during surgery is 10 percent. The possibility of
alleviating the pain is 50/50.
Ive spent many, many hors researching this. Have read everything on the net.
Have a whole syrinx folder.
Remember what you have is a Post Traumatic Syrinx, not just a syrinx or a
chairi malformation.
The spinal injury forms a dormant cyst, then as the years go by the cyst
fills with spinal fluid creating the syrinx. The fluid can go in but it cant go
out.
Any lifting, straining, coughing, bending, breathing can possibly make it
worse.........crazy but the truth......I about cried when I was first told that.
ron c7
