I have been trying to write this post since Friday night. I just have been not in the mood to put my feelings down. I think mainly because my mind is all over the place. I am having trouble finding perspective in this whole situation. In fact I am sorted tired of hearing myself talk about it. I do not want to remind myself let alone others where my family is on this journey. I really want to quit focusing on us, and move on. Sometimes I wake up and lay in bed and think "today I am going to push forward and not even think about any of this EDS, chiari, and surgery stuff." Then I put my foot on the floor and I am quickly reminded there is no forgetting. It is not going away. It is here to stay.
On Thursday very early I left for Cincy with my mom, sister, Aidan, and Chandler. I had to be there by 10:30 for a flexion/extension mri and a 3D ct scan. My mom dropped me off for the scans. The CT was first. It made me pretty dizzy as you have to turn your head to left and right and hold them there. The MRI really bothered me, as you have to hold your head way back for several minutes. My mom and I then had an appointment with Dr Durrani. My mom was seeing him too. She wanted to find out if her symptoms were due to EDS also. One thing I will say about Durrani is you wait and wait in his office. I started getting really sick. It was so bad I sat down on the floor and laid my head on the chair. This is pretty bad, cause doctor office floors are icky! When they finally called us back my mom had to get me a cool rag and some water. I thought I might pass out, the office was so hot. Thankfully I made it.
Dr Durrani came in and his first comment was, "Oh you do not look good my friend!" He did go over my scans first but I will come back to that. He did look at my mom's scans and found some interesting things. He believes that she has EDS. He was quite impressed with how bendy she was for her age. But he also saw many signs on her scans. He saw that she had some discs that were causing her numbness in her hands. He also saw that she had an enlarged pannus muscle which has developed over time to keep her head from being wobbly like mine. The crazy part is she had terrible headaches when we were little. This is how her body compensated. Thankfully her body found a way to help itself and it did not lead to her being paralyzed or death. I am so thankful that was God's plan for her life! He did tell her she needed surgery on her neck, but different from mine. He also wants more scans of her lower back and he is monitoring a mass that is right next to her spine. He feels the mass is benign but wants to do further testing. I know my mom's head was spinning. This answers so many questions and yet makes so many more. So if you could please pray for my mom!
Here is what I found out....I need a C1-C2 fusion. The 3D CT showed that my vertebra are uncovered by 90% when I turn my head. This is not a good thing. It is what is causing headaches, dizziness, black outs, and severe neck pain. I wish I had the pic to show you! It was pretty amazing. But he kept the scans. I will try to post a similar pic on here but it will not be mine. He wants me to wear my collar at all times (easier said then done). My surgery is scheduled for September 19. I will be there about a week and then on pretty strict rest for at least 4 to 6 weeks.
I have to be honest my brain is on overload. Tim is trying to get off, and I am going to try to schedule everything so I do not feel bogged down at the last minute. Part of me is just telling myself, "It is not a big deal." The other part is shouting, "you only get one chance to make this work! If you do not rest you can mess it up more!" And most of you know how I am with rest! Tim is also encouraging me to get one more opinion. He just wants to make sure I am going down the right road, especially with our family history and Brooke's Chiari. The problem is there are only 2 other docs I would even ask for an opinion from and they are both out of state.
Thank you all for your continued prayers and your love for our fam! I will continue to update you all! Many blessings!