Back Home Again!

First of all, I want to thank each and every one of you for thoughts, prayers and words of encouragement. This week has been quite an experience to say the least and I'm so glad we decided to go to TCI. They were simply wonderful! So here's the scoop...

Good news first; No Syrinx! This was a major answer to prayer. Also, my Chiari herniation has not increased which is great.

Not so good news; The Doctors stated that I have Tethered Cord Syndrome as well as Ehlers-Danlos Syndrome (joint hypermobility type) and Scoliosis. TCS to put it simply means that the spinal cord is attached at the thecal sac instead of being free at the base as it should be. This they believe is causing my Chiari as it "pulls" on the spinal cord/brain stem. They hope that if they perform the surgery to release the cord it may decrease my CM. If not, they said that they could do the decompression surgery, but this would cause even greater cervical instability. They would most likely have fuse my skull onto my spinal cord due to my EDS and I would never be able to turn my head again. Not gonna happen people! (Individuals with EDS have a defect in their connective tissue, the tissue that provides support to many body parts such as the skin, joints, muscles and ligaments.) They said that Chiari symptoms are greater in EDS patients as the cervical instability aggravates the CM herniation site more so than those without EDS and it causes severe pain itself.

They're having me start traction treatments daily for now to help relieve the pain and I have other tests to be done before they set up the surgery for my TCS. I also get to wear a nifty little Aspen Collar whenever I have to travel for any length of time to help with my cervical instability.
Enough of all that though...we did get to enjoy a bit of NYC and I can't thank my honey enough for being so supportive throughout the trip and for caring enough to create some special moments along the way. It was cold and damp as it should be this time of year, but Central Park was beautiful regardless! (Thanks Babe...)


So that's it in a nutshell. I'll be having tests done in the next couple of weeks and I will keep you all posted. Stay tuned for the rest of the story!