Tuesday, April 13, 2010

Update since my NSG appointment yesterday

As you know, the last time I went to Portland, OR (OHSU), the neurosurgeon (NSG) surprised me by saying I needed to have screws put in place to hold my head more solid on my spine, that he was advising me to do this, that it has been six years and no one has done anything to help me and I need to go ahead and get this done. (this was surprising to me because I have not had anything happen for me, surgically, to correct the problems of my non-union breaks in the C1, and because this surgeon had told me on my first visit to him that there was no way he'd perform surgery on me).

I felt very positive about surgery and life in general since he said that. On March 22, I had a new CT scan of my C-spine done at OHSU, so I went back yesterday to hear if they had found anything new on the CT, and to ask a few questions about surgery, and then I planned to tell him to schedule me for surgery.

Why this happens to me, I just don't know. But yesterday, the NSG was very different. He was nice enough, but he spent a lot of time (and kept coming back to it) telling me that there is a risk I could die from the surgery or I could have a stroke and be paralyzed, or I could go through it all and come out worse than I started. I don't know if he felt, in retrospect, that he had previously been too encouraging about the surgery or what. But this time, he was the opposite. And he seemed kind of ignorant of the whole thing.

So, I ended up not feeling as confident with him as I had been before, and he instilled a lot of doubt in me from telling me over and over all of his caveats. "I DO make mistakes sometimes," he even said!

Obviously, I didn't schedule surgery!

He mentioned that I should have an injection at the back of the head to see if that alleviates any pain back there. That would indicate what the surgery might do for me, he said. I had been wary of having any epidural shots due to my arachnoiditis, but he said these shots are into the muscles and nerves only, not in the spinal canal. So, I am thinking I might try these injections. Maybe they will be successful and the way I should go.

As he panned over the mid-sagittal image of my entire Cspine, I saw something that looked out of place. He was panning quickly, as the imaging program allows. As he panned past that place again, I noticed it again. When he, for the third time, panned past it, I called attention to it.

With pen pointing to the questionable area in the CT, I asked, "I know this is the odontoid, this is the anterior of the C1 and this is the clivus, but what is this bone? I've never seen that there before?"

He replied, "Oh, that is bone that is not supposed to be there. It is probably something grown by your body to try to stabilize your skull."

Indeed, it did look like chinking, a pretty big piece of bone lying in the "V" between the front of the C1 and the front of the skull (clivus). I asked my NSG if that could be causing any problems and he said no, "There are no nerves in that area." I am wondering now if this blob of bone could be affecting my swallowing perhaps, as an actual obstruction (instead of brainstem compression).

I also noticed how much closer the tip of the clivus (part of skull in front of the foramen magnum or "hole" in the skull that allows the nerves and spinal cord to run down from the brain through the vertebrae of the spine) is to the tip of the odontoid.

The odontoid is the front piece of the C2, around which the C1 rests and it all acts as a joint/cog that allows the head and neck rotation we are used to. It looks like a big finger sticking up and it is supposed to be quite a few millimeters away from the clivus/front of skull. I have been watching this with interest over these last years, whenever I get new imaging done, because as that space narrows, it indicates cranial settling, ie that the cranium/skull is settling down onto the C2/odontoid. I have watched as that space narrows on me. No doctor is as interested as I am, and quite frankly, they don't like it when you point things out to them anyway. THEY have hundreds of patients to think about and recall their imaging. I only have MINE. And I know it very well.

I did ask my NSG yesterday about that space narrowing and without any deliberance, he stated simply, "You did not break the C2." I knew that. But I am also very familiar with some of the signs of settling, which does not have to have anything to do with a C2 break.

oh well....insert long, drawn-out sigh here...

All in all, I have lost faith in this doctor. I liked how congenial he was, but that is not enough. And I didn't like how he started to rush me out after 15 minutes, which he has done the other two times I've seen him. How can I figure these things out and help my NSG to do so, when he only wants to spend 15 minutes with me? Such as my questions about the new blob of bone that is "not supposed to be there?" A blob of bone that he did not see and I was able to point out to him?

So, I'm sort of in limbo-land about that right now. I had built up a lot of hopes about surgery (again!) but I guess I've learned not to invest too much until the deal is sealed!

What a turn about, huh? anyway, I wanted to let you know, and I'll keep you posted. Thanks for caring and for your prayers. I'm doing just fine, it's just another jog in the road and I'm used to that!!


Cassandra said...

I'm disappointed for you!! It's heartbreaking to have your expectations and hopes dashed again. I don't know if you are able to find another NS, but maybe it is time.... as frustrating and difficult a process as that is. Big hugs to you!!!

Elaine said...

I had read on another blog a while back about Dr. Oskouian -- in Seattle. He did cervical/thoracic spine fusion for Laura (sweettartgirl). It sounds like he is very good at complex cases and also nice. Perhaps you can find out more information about him...

Here is a link:

Best wishes to you,

zoe said...

Hi V,

I've been having a @%!#@ time trying to remember my username and password so as I could say hi~
(I hope this works)
Anyway, I'm sorry your NS seems to be so wishy washy, but have to tell you I think your heart must please the Lord. You seem to be responding with a real and solid trust* And thaT my love, is- the goal of life! So, while I will continue to pray that God will clarify his will for you, give you wisdom and peace in it- I will also rejoice that you are standing firm in him*

love you,
big hugs,