Do you go back and forth between having Chiari and not?!

General
1

Since I was first diagnosed in May of 2008, I had only ever gotten my MRI's at the same facility. I have gotten MRI's anywhere from 6 months to a year apart. My last one at that facility was November of last year. Due to increasing symptoms/issues/problems I am having this year, my new neurologist ordered a CSF MRI, which I just had on April 15th.

I haven't reviewed the full results with him yet, but his office called to tell me that I had no blockage and my CSF was flowing freely. Hmmm, interesting since I also have a syrinx, but whatever. His assistant said we would discuss in more detail at my next appointment, which is coming up this Tuesday the 15th.

I had to go to Urgent Care this week for related issues, and here in the Portland, OR area many of the clinics and hospitals are starting to link their computer systems together, so the Urgent Care doctor had the MRI notes and read them to me, even though I haven't yet discussed them with my NL. I don't remember anything she said except for that fact that my Chiari is now only 4 millimeters! Every MRI between May 2008 and November 2011 showed my Chiari at either 9 or 10 millimeters!

You would think this would be good news, but I'm actually disturbed. I'm becoming more symptomatic. I have never wanted surgery, but as bad off as I have been lately, I have definitely been thinking more and more about it. Now with this news, I am afraid if they see my MRI notes which show a 4 MM Chiari, I will have a difficult time finding a NS even willing to operate on me. First I was scared, now I'm scared the NS would be scared!

I know MRI's can be interpreted differently, but...cutting the Chiari more than in half? That's a big difference and I am left feeling confused and frustrated. How does/could this happen? I'm afraid they won't even consider me as being a Chiari patient at this point? I've heard some stats saying the herniation should be 3 MM's, others saying it should be 5. So one day I have Chiari, the next day I don't?

2

I don’t have an answer for why the measurement of your Chiari has changed. Hopefully, someone else will chime in with some ideas. I do know that the size of the herniation doesn’t determine if you’ll be symptomatic or not. The “more than 5mm” rule is an outdated definition of Chiari…even still, many NL, NS, and Radiologists wrongfully use this guideline. My herniation is 4mm and I have a syrinx too…I am having horrible pain and other symptoms. I was told a lot of incorrect information before I finally saw a specialist. Dr. Ellenbogen is VERY knowledgable about Chiari! He is doing my Decompression surgery on June 28th. He is the Chief of Neurosurgery at Harborview up in Seattle, WA. If possible, you should send him your scans to review. He is one of the BEST for treating Chiari! I think he’s definitely worth the trip up North, if your insurance allows you to go out of state. Either way, please see a NS that has a lot of experience with Chiari. You can find links to lists of patient recommended doctors on the resources and doctors page. I hope this helps a little:)

3

When I was first told I had Chiari the MRI showed an 11 mm two years later it now showed 8 mm but I have way more symptoms than before. I was taken back when I was told this at the time so I did not ask why am I suffering daily with less of a herniation than when it was larger. So reading your post I guess it is not unusual for the herniation to get smaller, I am making a list of questions for my doctor and this is going to be one of them.