Thursday, January 29, 2009

how my new Neurosurgeon visit went last Wednesday.

I had a "meet and greet" with a NS on Jan. 21. It occurred to me that I had not reported here on how it went. I have a feeling that my "neuro" friends who read this will relate to how it went and how I was treated, and how I felt.

It seemed to be a waste of my strength and energy, but God knows.

I got there and the paperwork showed me he planned to give me ten minutes. He came out to get me and we went straight into the exam room and I told him up front, I don't know why I'm here. He said, I don't know why you are here either, all I got was this appt. form!

I was in my CTO, so I explained my situation, after he first asked me why I went all the way to NY for surgery. I took my CD of my latest imaging in NY (a copy of it) and gave it to him. He took it and looked at it, and came back saying, I see no evidence of the tethered cord they say you have.

And I said, that imaging was done after the filum was cut. (duh! so yeah, there was no tethering in those images)

I'd asked him earlier, have you dealt with many people with Jefferson fractures? He looked down at his papers and said, "Oh lots of 'em."

I asked him if he performed Chiari surgery and he looked down at his papers and said again, "Oh sure, lots of 'em." (My neuro friends reading this will know the point I'm making here. No NS in the world is doing LOTS of Chiari surgeries except the full time specialists. They may do one or two a year, tops. The Jefferson Fracture thing, he might in fact see several JF's a year since he is a NS in a ski town).

Bottom line, he said, "I have no interest in working under another neurosurgeon. I've never done it before and I don't plan to."

I said, "What if I went to NY and had a halo put on and then had problems and needed local help?"

He responded, "I don't know, what WOULD happen?"

I said, "What if I went to NY for surgery, and then had a CSF leak later here at home and needed local attention?"

He said the same thing, looked me right in the eye (obviously he wanted to push this point home) and said, "I don't know. You need to ask your NY surgeon that."

I asked if he would put a halo vest on me if the NY doc said I needed one.

"No. Believe me, people have big wrecks all the time with their halo vests, and I have no interest working under another neurosurgeon!"

I said, "I am online and know many peers from all over the world who have gone to this facility for surgery, and surely they have local doctors who will work with them for small problems."

He said, "I'm not interested in doing it." So, I replied, "Well, if that does happen, and I need a doctor (I said this all very softly, right out of my heart, without any defensiveness or malice), I will have to try to find one who will think....with his heart."

This got his attention and he said, "Oh, if you came to me in an emergency situation, I would not turn you away." (Oh, thank you so much, dear doctor!)

I actually told him I understood very well how this all must make him feel. That I trained horses all my life and if someone called in another trainer while I was working with the horse, it wouldn't work. I understood. I gave him some CCI biz cards, telling him to give them to his many chiari patients (yeah right), I was crying and so I apologized and said I was sorry for getting a bit misty, and he walked out of the room saying, "That's okay. You have a lot on your plate right now."

So, that's that. I cried more in the car. One feels so rejected, I know you all know what I mean, Feeling desperate that if I had surgery, I'm lost when I come home, if I have problems. One good thing from the appt could be that for me, I learned that this is something important that I need to nail down before surgery: who would take care of me locally? I could ask Dr. B if he has a colleague in Portland, OR who might work with him and me.

I had on my list of questions (and believe me, I stroked this NS like a fat kitty cat!) to see if he'd listen to my problems that I've had since my injury almost five years ago, that I feel is indicative of autonomic dysreflexia, a very important thing to know if you have it. He said that was not something he'd talk about, I need to see a neurologist (NL) for that.

I have been to one of the NLs in that office and don't have plans to see her again...maybe I can find one in a different town. Maybe this surgeon got his feelings stepped on a bit, but maybe it convicted him of how big his ego is, and how that big ego is keeping him from truly helping people.

In the end, new NS said he is going to talk to my hematologist/oncologist Dr. Fu to see what he expected from him, since Dr. Fu set up the appt.

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