Dr Fu called this morning, and my bones are actually worse than they were a year ago. After 18 months of IV pamidronate treatments. Actonel every week for five years. I am in tears.
I was so counting on having the fusion, getting the weight of my head up off my spine and brainstem. Having a life again. I had so many high hopes. You have to have that when you are prepping yourself for a surgery like this fusion surgery is. You have to build it up as a savior of some kind, you have to see brighter futures down the road which includes immeasurable pain.
My husband and I planned on getting a camper, putting a hitch on the car, traveling all over, flying up to Alaska to see it for the first time. I pushed those hopes ahead, post-surgery, post-halo. For me and now for him, it won't happen because I can hardly stand riding in the car to town and back, one mile away. My condition is holding him back, his happy retirement back.
I can't fly down to see my son, I will have to rely upon him taking the time to come see us. I had such plans...
I'm afraid if my head keeps settling, I will be in a halo for life.
I look to the Lord for my help for vain is the help of man. Oh, boy, do I know that one! Vain is the help of man. The first neurosurgeon who should have put me in traction and into a halo, who gave me "less than the minimum standard of care. Who sent me home with a small, flexible collar and made me take that off in six weeks. His "help" was certainly vain, and so far, no human has helped me to get this fixed yet.
I know the Lord has a plan. I survive on that thought.
And I prayed to him several times that if I am not supposed to get the fusion, if the fusion would fail and cause me to be worse, please let it never start...let Dr. Fu say that "no surgery."
I should be rejoicing, but I am grieving, tempered with the knowledge that God answered my prayers.
Dr. Fu said no more pamidronate because it is not working, that he would have work comp approve Avista for me, a daily pill, and perhaps Forteo, daily shots. He would also refer me to a spinal cord injury center.
In time, I will grasp this and be fine with it, but right now, tears course down my cheeks. I knew today would be momentous, it would either mean "go" or "no." But I never expected a "no." I had that whole Tethered Cord surgery in preparation for a fusion I'll never have! I'm much worse off in below the waist symptoms since the TC surgery a year ago. I'm confused and grieving and yes, worried about my future.
Lots of new symptoms started up in the last few months. And I turned my head a certain way a couple of months ago, felt a clunk, and have had a lot more occipital pain and symptoms since then.
For me and so many others, when will it end? Oh Lord, when will it end.
I'm sorry, dear readers, some of you (well, one of you) gets so upset when I show my honest face here, and I'm so sorry to cause you heartache too. I wanted so badly to come here with a happy post, I'm on my way to "better."
Quite possibly for me, better comes when I cross over.