Jul 10, 2012
Really real
In the past two months my neck/base of my skull have been awful. I woke up one morning, rolled over in bed, and my neck started clicking, popping, shifting, cracking, and feeling like someone kicked it. I called my primary care physician for an xray order to see if any hardware was broken. Then, we contacted my local orthopedic surgeon and after a CAT scan my fears were confirmed - I need a revision on my cranial cervical fusion. We tried injections with nerve blocks and steroids with no positive effects. I restarted physical therapy/cranial-sacral therapy, but this is beyond the help of all these modalities. Evidently my NY surgeons left the two titanium fusion rods two levels longer than the vertebrae they secured the rods to with screws. Now, six years later, the bottom of the rods are to close to my C-6/C-7 restricting motion, rubbing the vertebrae, and bone is trying to form between vertebrae and the rods - in other words, the clicking and popping noises in my neck are metal and bone hitting each other. To top that off, my left C-1 screw is protruding out the back of my vertebrae into "vessels". This seems to be causing odd shifting sensations, "creeky" hinge noises, cracking, pain, and squirty/bubbly sounds along the occipital ridge/base of my skull.
In the past few days I've realized my life is about to get really real - again. People walk through life everyday without real problems, true stresses, or issues that will truly effect their life long term. So many of us create the majority of our stress and anxieties by making poor choices, over reacting, being negative, or treating others badly. Sometimes its hard for me to have sympathy for people when they could easily alter there behavior and fix the problem... some of us aren't so lucky. It is hard to describe what it feels like before major surgery when you've already had several and know you'll have more in the future. The anticipation of the upcoming procedure mixed with the memories of painful past experiences leaves me anxious, stressed, and thinking about how long I can ignore the whole thing! I'm in the process of deciding who will do the surgery and where they will do it… Do I need to go back to NY? Did my NY doctors make a mistake when they installed my cranial cervical fusion hardware in 2006? Is any of my "residual pain" actually do to poor screw placement or rod length? Can my amazing, local orthopedic surgeon do the surgery here in IN safely? Should I get another opinion from another Chiari specialist? If so, who - an Indy doc, the renowned specialist in CO, or a doc in Chicago well known for his Chiari work?
Its just gotten so complicated. Three doctors agree, so far, that this is necessary surgery. They also agree it will not be an easy procedure for me. My surgeon will have to remove the left C-1 screw and right C-5 screw, plus shorten my two titanium rods by two vertebral levels. All of which is lies snuggly under layers of muscle, scar tissue, arthritis and a solid fusion. . . Did I mention I also have a large area of cerebral spinal built up at the base of my skull? And that my connective tissue disorder makes healing more difficult? Like I said, its gotten very complicated.
The more I talk about it or think about it the more real it seems. I'm scared. I'm sad because this may rule out any chance of a baby. I guess all I can do today is focus on the current task and worry about tomorrow, tomorrow. This surgery is inevitable, but I'm not in a hurry. My family and doctors seem to disagree, so we'll see how long they let me get away with ignoring the situation and concentrating on Logan/I having a great summer!
I'll update once I have more information- I'm waiting to hear back from my NY surgeons after they view my latest CAT scans. Any prayers or good thoughts you can send my way would be appreciated. Thank you and I hope you're having a good day!
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