Thursday, June 12, 2008

A Visit With The Neurosurgeon

I had a very confusing and slightly overwhelming visit with the neurosurgeon today to discuss the results of my cervical and lumbar MRIs.

I don't know if I was booked for a really short visit or if I was just in a brain fog because I've had a lousy week, but I felt like he was talking a mile a minute while I was falling farther and farther behind him.

It's not that he's a bad doctor who doesn't take the time to talk to his patients. I think this is the third time I've seen him, and I really do like him. And he's well respected as one of the top (if not the top) neurosurgeon in Portland.

Here's what I got out of it:

  • He wants me to have an EMG done, which I think measures nerve conduction. I've had it done on my arms before and it's quite painful. He says it's likely that it will turn out normal, but if it's abnormal, it will give him good information for whether it's my tethered cord or my bad disks.
  • He says I have very significant nerve compression in my neck. The MRIs are all digital now, so he could show me on his computer what the space looks like between my cervical disks that are normal and where it gets teensy tiny where the nerve compression is.
  • He still believes my cord is tethered and showed me on the MRI photo where my spinal cord reaches down farther than it should. His opinion contrasts with the radiologist this time around who said there was no evidence of a tethered cord. I think that's because it's not as significant a tethering as some people have.
  • He believes that most of my back and leg pain is caused by my disk problem and that fusing at L5-S1 will most likely have the greatest impact on my back/leg pain.
  • He says he would do the fusion from the front, which he says is a much faster recovery than the traditional way of doing it from the back. He says patients know within 4-5 days of surgery whether it was a success and are recovered in about three weeks. (He did not explain exactly what he means by "recovered." My experience in the past is that doctors often declare surgical patients recovered long before pain and movement issues are completely resolved.) He said it compares to a minimum recovery time of three months if fusion is done from the back.
  • He said the untethering of my cord would be a faster, easier operation to recover from and that it might make sense to do that first and then decide if the other surgery is necessary. But since he thinks most of my back pain is caused by the disk, he would actually recommend doing it in the opposite order -- fusion first, then untethering the cord if necessary.
  • He said the cyst at the base of my spine is inoperable. It was the first I'd heard about it and I'm unclear whether he believes that's responsible for any of my issues.
He looked at the cervical MRI first, then said we'd come back to it to discuss what, if anything could/should be done there after we discussed my lumbar MRI. Of course, by the time we were done with that, I was feeling quite overwhelmed and didn't remember that we were supposed to talk about it until I was out of his office and heading for the elevators. When I said, "Oh, is that why my neck hurts?" He said yes, it was some pretty serious damage in three disks in my neck.

So, what's next?

His assistant told me I should hear from the folks who do the EMG in 7-10 days to get on their calendar. Once I have that appointment, I'm supposed to schedule back to see Dr. O'Neill again.

Scott and I need to talk (he's putting Ellie down to sleep), but my inclination is that any back surgery should wait until I'm feeling better. I didn't really talk to Dr. O'Neill again about whether he still believes that my ongoing, year-plus illness symptoms could all be related to the tethered cord, as he said last time I saw him. And if that's unlikely, I don't know that I want to deal with the pain and recovery from surgical trauma on top of everything else I'm dealing with. It just sounds too overwhelming to me.

Coming up next week:

  1. I see the immunologist again to get the results of a bunch of tests he ran last week to determine if I have an immune deficiency. That's on Wednesday.
  2. I see the rheumatologist again I think on Thursday. We will talk about what to do since I stopped Plaquenil because of side effects as well as the results of my myriad of blood work since the last time I saw him. We will also discuss this theory that a tethered spinal cord could be the cause of all or many of my symptoms. (My internist is very skeptical about that.)

2 comments: said...

It sounds like you have a lot on your plate! The testing can be a real pain but worth it to have a clearer idea of how to get the process of fixing and recovery started. I wish you the best of luck.

Aviva said...

Thanks so much. I appreciate your encouragement and it's good to know that the data from the EMG is worth the pain to get it.

And your site is really impressive. I'll be poking around it a bit more, but I'm already impressed.