The "Answer" ???

The neurosurgeon called today. With my retroflexed odontoid bone/pannus formation being against my brainstem, he is still certain that it's the "Craniocervical Instability" that is causing the vomiting, pain, & worsening symptoms. It looks like I may not be able to put off the fusion for much longer. I was told this years ago, but decided to try & "live with" my symptoms as best I could until there were better options for treating this problem. With the nausea & vomiting getting so much worse lately, the headaches, vision problems, half of my face going numb & the incredible pain that I get... it looks like that is what is causing these & a host of other symptoms. I was hoping that it was just from the added stress of organizing the Chiari Walk. Once the Walk ended & the symptoms continued, I guess I'm wrong. I just wanted an easier answer.

I cannot explain how scared I am. It's not a "typical fusion" as many people have where they fuse just one or two vertebrae and remain able to move with the surrounding joints, this would be fusing my neck to my skull and losing most of the ability of nodding "yes" or "no" with my head. I cannot imagine driving, or putting my head down to help clear my throat when I choke on something. Just scary to think about all of the other things that I may lose. I don't talk a lot about my problems and my fears...but this surgery just seems so scary to me, losing the ability to turn my head (although turning my head is when my symptoms are at their worst), it just scares me so much. But "if" indeed this can resolve the problems that I'm having, I'd do it. The only problem is that there is no crystal ball. There are no guarantees in things like this. I just don't know how I could bear it if I went ahead with this surgery and then woke to find that I feel the same way as I do now.... PLUS not being able to move my head.

The doctor wants me to have some tests first, then do "invasive cervical traction" in the operating room where they can monitor my neuro functions for 1 1/2 hours in there with the traction screws in and get the pressure off of my brainstem to see what effects they can achieve. This will tell them what results I could expect from the fusion. I will also have another MRI while sitting up... to see how much pressure my brainstem is getting from my odontoid bone from the cranial settling with gravity. I first have to have a Dexa Scan to see what my bone density is to see if my bones would be dense enough to tolerate the screws, rods & plates. (I'm hoping that is a sign one way or another)

If we go ahead with the CCFusion, then at the same time he will fix the plate in the back of my skull that has been so painful. Right now I have a hard time using the hard collar due to pain over the plate in my head, but when I do use it, it does help my symptoms, but can only use it for less than an hour. I was hoping that a "halo" wouldn't be needed, but he said that would be a judgement call in the OR, & also depending on the bone scan, but that I should expect it. THAT has been a big worry of mine. Call it vanity, but this is going to be hard enough without looking like Frankenstein with bolts coming out of my forehead. (There would need to be lots of Valium in my future!) Halloween would be over, but if I had it done near Christmas, I could hang ornaments from it??? (UGH)

Well, I do wish now that I'd done this back in 2000, when I was first told that I'd need this, as I'd be all recovered by now, but at this point I'm just praying for a sign as to what to do. So for now I'm going to see what these tests show. I hate to be far from home, but this is where they seem to have the most experience and doctors that have proven themselves to me before. I hope that this is the "answer" already.