I know many of you have been praying for some more answers for our fam. We arrived home later last night, and were completely wiped out from 3 days of driving and appointments. The weather was horrible with non-stop rain on Thursday and Friday. As Chandler said, "We were all soap n wet!" Again so thankful for the generosity of the Ronald McDonald House! It is so nice to have a safe, comfortable place to be! Honestly I did not hear what I thought I would hear from the doctor. My head is still swimming.
I will start with Brooke first, as she is the success story! Her MRI and incisions look great. She still has an enlarged pannus muscle in her neck. She is just under the red zone for instability. Which means she is unstable but does not have to have a fusion now. So the hope is as she grows this may right itself. If not, she will need a fusion down the road. For now, she is supposed to work on strengthening her core and wearing her collar in car and when she has a high chance of injury. Brooke still has a long list of things to avoid for the rest of her life. Good news is....she is so much better than she was! She is living a life we never thought she would have. Of course her and Dr B teased and laughed with each other. He leaned on his hand and smiled at her with such love. He commented, "seeing her makes me think I am doing a little good in the world." I assured him that he is our hero! Without him our sweet Brooke would still be in constant pain and maybe worse. It is always good to see them together!
On to Aidan. Aidan has what is called a Chiari Variant. It is not a true Chiari Malformation because it is a smaller amount hanging from his skull than a "typical" chiari. As Dr B says(and many agree with this), if your brain is hanging from your head than it is not normal! It can cause the headaches he has, and many other issues. The other problem is Aidan has a retroflexed odontoid. This is the bone that runs in front of the spinal column. It should be fairly straight up and down. His is bent significantly backwards. What this means is a brain decompression on Aidan is much more tricky. Thankfully, Aidan does not need a decompression. Right now we will manage his headaches with medication. But if his symptoms become worse and he does require a decompression, he will also need a fusion at the very same time. Otherwise his head will be completely unstable. So right now we will watch and see. We are going to do all we can to protect his neck. This means no roller coasters, no trampolines or bouncy houses, and trying to avoid anything that will jar his neck.
If this was not enough info, I also learned more about me. I found out that I also have a Chiari Variant. Mine is larger than Aidan's and is a strange shape. My cerebellar tonsils are chubby(even my brain has gained weight! ;) ). I also found out that the back of my skull is very small and makes everything very tight. There is no room for the CS fluid to get to my brain. Basically my brain is plugging the hole. The only way to fix this is with a brain decompression. Now I do not have to have the surgery. I will not die without it. But I will never feel any better, and will probably get worse. For those of you who know me, I have slowly deteriorated over the past 4 years. I can't even imagine what 4 more will look like. At the same time, another major surgery was not on my to-do list. In fact I wonder if I can even do this! As the doc said logistics are the hardest! This surgery is a 4-5 day stay in hospital. Than another 2 days local before I travel. And by travel he meant fly. Four days local healing if we drive home. And the drive has to be done over 2 days. Two weeks of needing a constant helper when I get home. And a 2-4 month complete healing. Not only is this time...it is a huge financial strain as well as needing to plan every detail out. I did a very poor job of healing last time. I have to take this more seriously.
My mind is racing on all the details. I am trying to let go, and just pray. My mind is frantic though. I really feel I need a second opinion too. One of the things that concerns me is my last surgery was a c1-c2 fusion. It is common in people with EDS to also need a cranial fusion after decompression. As of now I do not need this. But the chances of me needing it after surgery are high. I wold rather do this all in one sweep. But this is not what was recommended. I just do not want a 3rd surgery. There is another amazing doc in Virginia. I almost went to him before my last surgery. I backed out because of finances and just feeling horrible. I can't do that this time. I need to see what he says. Again this is all so much info. I am physically and emotionally exhausted. A trip to NY is complete torture, and I am paying for it. I thank everyone for your prayers and help! We are so blessed. Sorry this is a pretty straight forward post. My heart is sad and I just do not have the energy to write more. I just need some time.