This is going to be a sweet and simple post. Just drove to Maryland yesterday and home today. Feeling drained but hopeful! Dr Henderson is awesome! Just wanted to say that, although I really do not like talking politics with him. Would rather we could just stick to the medical stuff. He said my fusion looks great. And from the CT I would completely agree. My neck is so straight! He said it can take a year and half to completely see the full healing from surgery. He encouraged me to continue with PT and making my body stronger. He took one look at my neck and throat and said, "Mast Cell." I knew there was a high chance of the surgery triggering my mast cell again. So now back to getting it under control. The main way is diet. I need to focus on putting the right things into me so I can heal.
Dr Henderson said several times he did not want to see me back for surgery. He told me I will always have pain and my body will continue to "fall apart". The best way to prolong my health is diet, pt, and strengthening my body. Surgery will not be a fix. He feels many of my headaches are caused by my jaw. He showed us how my jaw is slipping all over the place. I knew it was going in and out of socket. It is also doing a type of circular motion. He said this pressure is most likely leading to pain. He wants me to see a specialist for my jaw. He also prescribed a new medication for headaches not caused by this.
He is super hopeful that with working on proper posture, keeping my neck and spine safe, and increasing my strength, my EDS should be managed. And really with EDS that is what one hopes for. Now to get the Mast Cell and POTS under control again. Hooray!!! I love when docs say food and exercise and not surgery! He was speaking my language today!! <3