Living with Chiari-Update

This week has been an interesting week for us as far as Chiari is concerned. (That is the last thing we want are more interesting weeks). I had another MRI on Tuesday morning, and were told they wouldn’t get back to us for probably 2 business days. They scanned my neck and upper back. They were checking for syrinx, a fluid filled pocket along the spinal cord.

We got the results back on Tuesday evening. I have 2 (or one really long one, they aren’t sure) syrinx. The bigger in is 5.8mm wide and goes from my C4 vertebra to my T1 vertebra. Then the second (or the continuation of the first) is 3.8mm wide and goes from my T1 vertebra to my C6 vertebra.

Here’s a picture of a spine so you can kind of judge where they are.

Spinal coloumn

What this means for me, well, I wish I could tell you. Some doctors say that I need the surgery since I have syrinx and they can cause a lot of problems that lead to paralysis. Others say that since I don’t have serious symptoms that are affecting my quality of life severely (I tend to disagree, but that’s just me) that I should watch my symptoms and wait until they are more serious before surgery.

We base our options on what we have read among the communities online, but we are getting appointments with several (okay 3 at this point) neurosurgeons in the area. Our first appointment is on December 2. ***UPDATE (about a half hour later) Our first appointment is now on 11/23, with a different doctor. Yeah for sooner!!*** We’ll let you know more then. 🙂

4 thoughts on “Living with Chiari-Update”

  1. Wow, well it just keeps coming, doesn’t it? I am sending all my good thoughts your way. I hope that you find a doctor that gives you honest information that will help you to make the right decision for you. I’ve been thinking about you wondering how things were going. HUGs.

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  2. Yep, I don’t do anything halfway. It’s not my style. 🙂 We’re meeting with a few neurosurgeons so we can get as many opinions and go with the one we are most comfortable with.

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  3. Dang girl! That’s a lot to swallow… no pun intended, ok – maybe just a little Jeppson humor. I admire your drive to educate yourself and make a good decision with several doctors. How did the appointment on Tuesday go?

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