Sunday, June 7, 2009

Back home...and back to square one?

Dear Friends and Family,

Some of you know most of this update...some of you may not know because I could not access
my email program remotely while in NY, so I might have missed a few folks and I'm sorry.

I am back home in WA. Dr. B decided that the fusion surgery was not for me. He says that part of my
C1 is starting to grow bony fusion between the breaks (due to the Forteo treatments), and because of that, he cannot do the extraction fusion. If he did put me into traction before the fusion, it would break what is trying to grow back.

I'm confused about it all. Glad that I didn't have to have the surgery, glad I don't have a halo on, but feel
back to square one or worse, because there isn't any clear treatment plan for me at all. For three years,
since I became a TCI patient, I've had a treatment/surgical plan.

Now, I don't have one. So, that is disheartening because that means that the pain and symptoms I have, there is no hope of anything fixing them or lessening them. I need to start working on a new mindset and accepting the way I am, and just dealing with it without looking for a "fix" I guess. But that isn't my nature.

Dr. B wants me to have a Lumbar Puncture to look for other causes for my pain, including infection. He also is suggesting occipital injections for the pain at the back of my head, and Diamox for increased intercranial pressure.
I just find it hard to give up and say there is no way to stabilize things for me so that I can get out and walk.

He said I am to keep the brace on and only phase it out after months or years. I am to start back on the daily Forteo injections because he feels that is what has helped the bone in the C1 to start fusing.

Disappointed in no future "fix," yes.
Feeling hopeless or depressed, absolutely not.
Thankful that God intervened and answered my prayer (which had been, "please show me if the fusion surgery is right for me or not." YES!
Happy to be home with Pete and the dogs and the flowers? Yes!

I'm relying on the Lord to show His plan to me as I keep moving forward on this journey. I'm not nearly as bad off as so many, and I keep reminding myself that God preserved my life in spite of great odds, and He did so for a reason.

I am praying for you, too, as I send this. Thanks for your prayers, they surely were heard and answered.
God bless you always