Adapted from a Facebook post:
I met with the neurosurgeon in Seattle this week, ready and prepared for setting the date for my surgery and expecting to go over details.
I was very surprised by new information that is pivoting me in a different direction. High quality imaging revealed that the Chiari Malformation has not causing a cyst in my spine like the previous MRI indicated. The doctors thought a cyst was the source of my neurological symptoms. While it is good news not to have a cyst in my spinal column, it also means that the cause of many of my symptoms remains a mystery and my neurosurgeon wants clarity. He strongly advised me to hold off on surgery and find out what is causing those symptoms. Surgery right now would relieve some of my symptoms, but would cloud everything and make it difficult to sort out what else is happening in my body.
What we didn’t post at the time was that he told us that while I had Chiari, he also believed that I had Multiple Sclerosis. He stated that he didn’t believe that the Chiari was the source of my symptoms. He is part of the old school of thinking about Chiari. They don’t believe Chiari causes any cognitive issues or many of my random issues like periodic hearing loss, numbness and the location of some of my head pain. The MS part didn’t make sense to us because I have know lesions on my brain. Very few people have MS without some lesions on their brain. He just shrugged his shoulders to that and suggested that I do yoga and meditate. He also made a big point of dictating a note to my primary, from a phone, say that I was fine and that my Chiari was not causing any me problems. He finished the appointment by getting very close to my mom and saying to her, “Do Not Take Her Anywhere Else For Surgery!
We returned to our hotel room in Seattle, that night, feeling completely defeated and bewildered. We didn’t know what our next steps looked like. We were trying to be grateful that I wouldn’t need brain surgery, but it just didn’t feel right. I felt like I was in The Twilight Zone. Since I don’t sleep much (because of my compressed brain stem) I binged watched the entire season of Young Wallander series – 7 episodes!, it was awesome!
It is a huge relief for me to not be facing immediate brain surgery. There is also intense frustration at being back to not knowing what is the cause of my neurological and vascular symptoms and how to relieve them. I met with my primary doctor yesterday. The next step is to begin working with several new specialists. The upcoming weeks will be full of more tests and appointments. I am trusting God through this unexpected turn. I still feel very ill. I am weary and it’s been a tough week processing this new twist. I appreciates all of your prayers for healing and your support and encouragement. I have a hard time replying right now, but I still read all of the posts and messages and I’m grateful for them.
I love you all!
November 22, 2020
The more time the passes the more defeated I feel. I am now left in this waiting hole with no answers. I was scrolling through Facebook and came across a A.W. Tozer quote that really spoke to my heart.
And whatever you ask in My name, that I will do, that the Father may be glorified in the Son. If you ask anything in My name, I will do it. – John 14:13-14
In all our praying, however, it is important that we keep in mind that God will not alter His eternal purposes at the word of a man. We do not pray in order to persuade God to change His mind. Prayer is not an assault upon the reluctance of God, nor an effort to secure a suspension of His will for us or for those for whom we pray. Prayer is not intended to overcome God and “move His arm.” God will never be other than Himself, no matter how many people pray, nor how long nor how earnestly. God’s love desires the best for all of us, and He desires to give us the best at any cost.
He will open rivers in desert places, still turbulent waves, quiet the wind, bring water from the rock, send an angel to release an apostle from prison, feed an orphanage, open a land long closed to the gospel. All these things and a thousand others He has done and will do in answer to prayer, but only because it had been His will to do it from the beginning. No one persuades Him. What the praying man does is to bring his will into line with the will of God so God can do what He has all along been willing to do. Thus prayer changes the man and enables God to change things in answer to man’s prayer.
A.W Tozer, The Price of Neglect, pp. 51-52
Weathering Chiari 