Sunday, October 2, 2011


I pecked out a long post here to catch up with all that has occurred over the past five months, and I hit "post".... but it simply disappeared. Gone irretrieveably. It had taken so much gumption just to get it written out...and now it was gone. That was two weeks ago.

I'll try something short here first, to see if it will post, before I write something long only to lose it again.

My last post, I was on my way to the doctor at Swedish Hospital near Seattle. With hopes lifting me on my way and dreams of a nice neurosurgeon who would listen, who did not have arrogance and a big ego, and who would thoughtfully consider what could be done to help me.

Fat chance. He was almost as bad as the worst yet, this neurosurgeon the last in the litany of 8 neurosurgeons. He came in the door with his mind made up before even seeing me physically. He did not have more than a few minutes to go over the imaging I'd brought him when I arrived early for the appointment.

He announced that he simply never reads the reports of others. He makes his own decisions. Surgery is not an option for me. My symptoms are due to my Post Traumatic Stress Disorder.

Which only made me cry the harder and I could not stop even though my mind was telling me to stop. I hate crying! I don't want to do it, I am a darn strong woman and a child of the Living God, I shouldn't be crying but when this doctor opened his mouth to speak his first words, I could see that he was no different than most of the others I'd seen before.

He didn't care a lick about me. He pointed to the short version of my files that my PCP had sent him, and announced that I am a "trainwreck," and that NO doctor would ever work on me because they also would see I am a trainwreck waiting to happen.

I told him that the team of neurosurgeons at OHSU in Portland a year and a half ago had studied my imaging and had offered surgery to me. He told me to run as fast as I can away from them.

He was a jerk.

But, in the midst of being just who he is, I could see a positive. I now appreciate the docs at OHSU much more! I'm not in love with the neurosurgeon I saw there (3 times). That was why I was seeking a different surgeon. The Portland doc would not talk to me for more than 15 minutes. I did not see any effort on his part to create a connection with me which might reveal to him ways I need help. He simply did not want to offer me surgery, either, and said so adamantly. But, he did one thing that was either mechanical or heartfelt: he said he would have the whole neurosurgical team look at my imaging and would tell me on my next appointment what they all decided.

And when I went back to find out, this same doc burst into the exam room telling me: "You need surgery and you need it now! No doctor has done anything for you, you are very unstable (instability at the craniocervical junction) and you need rods, screws, plates and wires to shore you up!"

As I said, I decided to wait back then because this doctor, besides only allowing me to stay with him for 15 minutes, and, when I asked him to tell me more about the surgery, he told me he'd tell me more once I decided to go for it, despite those things, he also told me, "Now, you must be aware that you could end up worse after this surgery! You could become paralyzed. You could become a paraplegic. You could die! I do mistakes sometimes, you know!"

THOSE were the reasons I wanted to look elsewhere.

Now, I appreciate that team of docs at OHSU. And I think every day about surgery. This instability at the C1/skull junction is worsening. The CT of the C1 showed, according to the radiologist's report, that the C1 is moving, slipping to one side, allowing the bony finger of C2 to slip the other way within my spinal canal and thus crunch the brainstem...the pain is not good...and right now, I sit here just feeling neurologically OFF, I'm sweating bullets, swallowing problems have been worse than ever, vision is worsening, balance is worse.

I think of surgery every single day. Wondering if I can work up the nerve to go for it. Wanting a sign from the Lord but not getting one that I can read. I want to call up OHSU and schedule an appointment with a kinder, gentler doctor. I want to ask a nurse there just who she would recommend, perhaps to her mother, what doc would she want to treat her mom? Would they do that? Would they allow me to see another neurosurgeon? I don't know.

I need new glasses for sure, and I need to have my teeth fixed. I have a front incisor that looked okay, but it was very ouchy. I went to the small town dentist here locally and he was sick and a woman was taking his place, she drilled into the back of that tooth and accidentally drilled right through to the front! So, she pasted some junk in there that looks terrible. Yeah, I'm tired to the bone. I'm happy with life...but it almost feels like things are piling up too high.

The Lord will lead and guide me, I know. I keep waiting for His sign.

Thank you for reading!