Hi guys,
Thanks from many of you for the warm welcome. I am excited to have found a group of people who truly will understand what I've been going through!
My Chiari was and "incidental" finding on an MRI. Shortly after the birth of my first daughter I had a migraine with an aura, something I had never experienced before. Of course after going to the Dr. I was freaked out because he said they had to rule out a brain tumor or MS. Not what you want to hear as a new mother! They took so long to call me with the results and it was agonizing for me. Finally a nurse got back to me. She said your MRI is normal, except for a "minor malformation your were probably born with, kind of like a crooked nose or big ears." Well, she didn't know that I am a pediatric nurse and have taken care of children with Chiari! I said. "Do you mean a Chiari Malformation?" She was very surprised, obviously, I'm guessing she didn't know what it was or how to pronounce it. :) Of course I only had surface knowledge of it, I have taken care of kids in the recovery room post op, so I knew it could be surgically corrected.
At first I didn't really think it was a big deal. I had an appointment with a NS in our area, I am fortunate to live close to a well known center. He saidit was my choice, but he didn't feel my symptoms warrented surgery and I agreed at the time. I had some increase in symptoms, saw him again, and again he said he still felt I wasn't a surgical candidate. I was fine with that, I really didn't want surgery. Interestingly, when I was pregnant with our second, I felt SO much better. That is what I am curious about- have any other women who have not had surgery experienced that?
Unfortunately, I am now having a big increase in symptoms. The worst is that I have had several episodes of feeling like I am going to choke on food. It is so scary. The first time it happened, I think I had a huge stress reaction, I ended up in the ER on stroke alert/possible MI. Of course they found nothing, with a huge workup. I hoped it was a fluke, but it happened again yesterday and I think it has to be related to my Chiari. Looks like I'll be making another trip to the NS... I can live with a lot, but random choking episodes is a whole other level. I feel like I can't be left alone with our two kids, and that's a bad feeling.