Sunday, August 2, 2009

A new day, a new month, a new plan

This will be short.

I am so weak, my hands are hurting and numb and not going where I want them to. But want to update my friends.

I have an appointment with a new neurosurgeon, Dr. Fraser Henderson in Bethesda, MD

I'm quite excited to see him. I sent my package with the CD of my 2 month old imaging done in NY; a 4 page letter of my background and history; and a 2 pg symptom list. He reviewed it and had his secretary call and ask me to come see him.

I'm going on faith, believing that this man, whom I've heard wonderful things about, would not have me fly from WA state to MD if he did not feel he had something important to tell me and could offer me some help.

This is a new plan, a new direction. After 3 years as a The Chiari Institute patient, I did not want to leave their care. Dr. B is a brilliant neurosurgeon, a lovely man, and I was honored to be his patient for that time. But...but...he does not offer me any hope or help or surgical treatment. His opinions have changed. But my symptoms have not, except that they are increasing and intensifying quickly.

I feel I need stabilization at the skull base. He does not feel I need it. I'm choosing to seek another opinion. I could write pages on why I feel I need it, why I am unstable, etc...but that can be found in the time since this blog began, on every page.

It's been hard for me to post this here because I do not want to throw any disparagement upon TCI or Dr. B. This is my personal situation, my choice. It has nothing to do with anyone else's situation.

So, I'm looking forward, not back. My appointment in MD is Sept. 16.

Again, it's a journey of faith. I don't need to spend the money on another flight and hotel. I don't know where I'll find the strength to make this trip alone. But I know God knows, and I know I can't continue on this way, getting worse each week. The implications of this direction are too foreboding. And I don't feel ready to give in and give up.

Besides, the pain is just too awful. I need some help.

I was launched off that big, speedy jumping horse over five years ago. No one has helped me yet. No stabilization whatsoever. No surgery at the skull base/C1 level. In the beginning, I was given a small, flexible collar and told to take it off in 6 weeks. Later, as a TCI patient, I was prescribed rigid collars and cervical thoracic orthotics (CTO). But these do not keep my skull from settling, and, settled, it has!

God must have a plan for me. I'm just trying to follow this, one step at a time. This really doesn't feel to me like I've gone back to square one. I am not upset with anyone. I just feel God had a change of direction in store for me, and so I'm off and running. Well, metaphorically, that is.

Wish me well, say a few prayers for me. I will let you know what Dr. H says. I know I'll be in good hands, I have a sense of strong trust in this man, though I have not met him before.

Thanks for coming along for the ride!

1 comment:

cheryl said...

Email me about your new neurosurgeon. I had surgery last week and would love to let you know how wonderful he is!!