I wrote this a few days before surgery but never got it posted so here it is, part 5:
I have to say the hospital is quite efficient here. In a matter of a hour I had 5 X-rays, blood, urine, covid, and cat scan done. We then went to a different clinic where we did a MRV scan. It is a 3D mapping of my arteries, and veins. We did see how things had moved with my instability. We gained valuable information through this scan. Turns out my right jugular doesn’t have blood flow basically at all. We hope that the fusion will be enough to unpinch this so I can avoid a jugular decompression.
It is an interesting time we live in. To travel we had to show medical forms every step of the way. Even in Salt Lake City airport. It is not easy currently to leave the country, and I’m not really sure why someone would want to leave without a good reason. Every person traveling was asked why they were traveling.
Traveling was really hard on my body. The pressure change during take off and landing sent shooting pains through my head. Not being able to lay down for so many hours. My head was just too heavy to hold up anymore.
I had no direction from Dr’s. Through hours of research I would find new disorders that would be comorbid to my condition and research those. Each one adding a piece to the puzzle. I’d find out what scans I’d need, blood work, where to go. Call around till I found the place and then contact my family Dr. I’d bring him up to speed on where I was at in my research and he would write the order I needed to travel out of state to get my MRI’s, and CINE scan.
I first learned of Ehlers-Danlos Syndrome (EDS) through a local pioneer in these medical conditions. She paved a way for many. I wouldn’t want to do what she had to do, she has blessed so many who are walking in the dark here.