Following that appointment I went to Dr. Fraser Henderson in Bethesda. He is the most caring and compassionate person I have ever met, not to mention out of the pool of doctors known. On August 17th I had surgery for a tethered spinal cord, followed 4 days later by a fusion and plating of cervical 4-5, 5-6, 6-7.
I am 4 week post op presently and the disabling headaches have dissipated thankfully. My body is trying to heal, and my paranoia of "messing things up" is overwhelming. I am concerned if I should walk more, or did I walk too much. Should I be in physical therapy, or do I need to heal more? What about my posture, am I sitting in a way that could further worsen my symptoms as most EDS people do.
"Normalcy" is all definitely relevant. I did not know that other people could not twist all the way around while seated in a chair and grab the gallon of milk out of the fridge.
This journey is hopefully one of learning to live. My situation of genetic misfortunes is not optimal, however, I will do whatever necessary to not only continue, but enjoy my life.
