I just received my formal dx for EDS. My head is just spinning! I knew that this was probably the case, my father passed from the vascular form, mine seems to be the hypermobile type. Seeing it in writing is just weird. By the time I arrived home the cardiologist called to schedule an echo cardio gram, the rheumatologist called to set up an apt. For my plan of care, pt called for apt. and ns called for an eval for possible fusion from scull to thoracic region due to cranio-cervical instability (not addressed at decompression surgery time). All appointments within the next week. I’m overwhelmed! I had decompression, duraplasty and c1-2 laminectomy done in 2006. I really thought I was done! My symptoms have returned since a fall down a flight of stairs and subsequent TBI in 2009, and have recently really increased to almost pre decompression state. But wow how come my drs have waited 3 years to explore everything, all at once. Don’t get me wrong I’m relieved that my PCP is working with me and trying to find answers and I do feel validated. But come on this a little dizzying! Lol
Sorry to hear all of this..like Emmaline said..it is a alot to take in..pls let us know how all your appts go.
Actually I see this as all a very bright side. It was just a bit dizzying, I knew what was going on, it just seemed so confusing that this dr actually listened to me and went and did his research and actually admitted what he didn’t know. I think it’s just the fact that I’ve been battling this for so long and told somany times that its just in my head. It was just so validating but just a bit scary because they are all on board now and feel that it is so urgent, none of them are chiari experts. I sent all the stuff for the WI Ciari Center and they refused to take me as a patient because I am unable to have an MRI because of an old spinal cord stimulator implanted on the dura matter in the cervical spine. They said that it was impossible tell anything from a ct. But these drs are willing to help start a new chapter. Because I know I will return to how I was post decompression!
Thank you for being here letting me babble! Lol