Chiari Online Support Group

Surgery was 8/2013

Hi there, been gone for a while

I had my Chiari surgery in Aug 2013 and seemed to fix most problems - #1 problem was breathing, I was gasping for breathe all day and I had horrible moments throughout the day that felt like I was being suffocated. I found out about the Chiari in May 2013 and ended up having emergency surgery by August 2013, because the concern was there was damage to my brain stem.

I ended up having to do a fusion in my neck about 1 year later due to the pressure from my brain on my spinal cord was causing complete numbness in my arms. That surgery didnt heal properly so last Jan 2017 they went in and fixed my neck this time from the back. I also have sjogrens, hashimotos and some other auto immune stuff. I am 49 and beside the terrible genes I feel like I’m in great shape.

Here is my question?

About a few months ago I started having the migranes and the chiari pressure. Since my last surgery I have been having elevated heart rate that they havent been able to figure out. Now I am having terrible pain in my spine and muscles of my back, my PT DR thought I might have Ankylosing Spondylitis because everything is super hard and not very mobile. The Chiari pressure is starting to move from just the back to my neck, traps and now terrible pain in my collarbones like if they are dislocated. I also have found out that my Chairi has dropped lower than before surgery. I have been to UCLA, UCI and now they want to send me to the Mayo Clinic in Rochester Minn because they are not sure what to do with me. The heart Dr has given me to June to figure out or they are putting me on Meds to lower my heart rate.

Any one have this happen? I know Mayo would be a huge blessing to unlocking this puzzle but I’m not sure what the cost will be. We are self employed so we are paying over $3000 for medical expenses a month and it is really killing us.

Thanks for any help or advice :slight_smile: