Wow! Its been almost 9 months since I last wrote a blog entry. I think I have two reasons for not writing, both quite warped, so I guess I better just get over it and write away. The first reason is that I don't want people to know how bad things really have been for me. The second is that I thought if I didn't write or think about the pain, that it would go away.
Unfortunately, my health has continued to decline since my last surgery (almost a year ago). I'm dealing with constant pain in my head, neck and back and intermittent pain in my legs. The constant pain in my head is in the back - where my hardware is. I also have a few different types of pain in my head, from a pressure pulse pain (a blog friend of mine wrote a great explanation of how this happens ) to a sharp pain in the back of my eyes. My lower back muscles are always in a spasm and I have a pinching type pain in the middle of my spine that happens when I move certain ways. My upper back and shoulders are very tight and I can't seem to find anything that provides relief. I also have had some new issues such as urinary problems and instability in my pelvis/hips and shoulders.
My pain management doctor seems to think that I'll have to live on pain medicine. He has increased my dose just about every month. I'm seeing a bit of improvement with the increase, but not nearly what I'd like to see. He had some great ideas that unfortunately didn't help much. He tried something called dry needle trigger point therapy. Its a procedure that uses tiny needles to 'reprogram' the electrical signals in the muscles. I had about 6 treatments and didn't see any help, so we discontinued that. He also suggested that I get evaluated by Dr.Francomono for clarification of my possible EDS diagnosis. Dr.Francomono is a genetic specialist working with the TCI doctors to find out if there is a connection between chiari, tethered cord, and EDS. I'll write more later about that appointment, but long story short, I have Classical EDS (Ehler Danlos Syndrome).