It's been awhile since I have posted. I guess I figured people are just as tired of hearing about my health as I am from dealing with it. So much has happened since my first visit to Maryland(April of 2011)to meet with Dr. Fraser Henderson and Dr. Claire Francomano.
I have now met the diagnostic criteria for Chiari malformation. That's 5mm of your brain falling through your skull to put it bluntly. My C5 and C6 vertebrae are now plated and fused and my spinal cord has been untethered. Spinal surgery was so much easier than I expected. A piece of cake compared to knee surgery.I am sure the magic hands of Dr. Henderson had a thing or two to do with it. And untethering my spinal cord has provided an amazing amount of relief. Haven't needed meds for back pain since about a week after my surgeries. I have a few more items to add to my list of EDS related challenges. Esophopharyngeal dysphasia aka jacked up swallowing.Slight Unilateral vocal cord paralysis which is a result of the chiari and will be a help in monitoring when it is time for brain decompression surgery. Dr. Henderson says "you will know when it's time"...as I understand it, the brain falls and puts pressure on a nerve that controls your vocal cords. I also have a hypoplastic A1 segment which means I am missing a part of a vascular structure in my brain known as the Circle of Willis. This increases your chance of brain aneurysm.
And finally in my list of new and fun EDS related oddities is a hiatal hernia.
So, blah blah blah I'm still falling apart...blah blah blah seeing a Dr. about this and that...blah blah blah I still have my chin up and am fighting the good fight with humor and sleep and meds and friends....and my dog Harvey.