Elizabeth will not need to go through the C1-C2 fusion surgery, right now. I say right now, and this will sound ridiculous, the only thing wrong with her is that her head comes off her body at least 70%. The problem is the doctors do not know what is considered normal. We cannot risk surgery based only on that test. The risk would be worth it if she was turning her neck and the arteries to her brain were being pinched. She went through a series of tests to determine if this indeed was happening. According to the tests, she is okay. She is not having numbness and tingling or severe headaches or neck pain. She is also not having any changes in her brain or spinal tissue. Given all of these factors as well as the fact that she is still falling and this could be deadly while recovering from the fusion surgery, we all decided that she is okay for right now.
That CTA that was created for her turned out to be a huge blessing. We did not need to guess or try to figure out on the operating table if the arteries were being compromised. Praise God!
While preparing for the CTA, the decision was made to take her off of some of the medications that she takes to control her blood pressure and heart rhythm. She crashed pretty hard. She had difficulty walking, paying attention and was very dizzy. This gave us additional information that the neck is not the culprit in the blacking out episodes.
Right now she will not need to wear her neck brace which is such a blessing for Elizabeth. This is the part that I cannot explain to the doctors. Before we went into the appointment, Chuck, Elizabeth and I all decided to place the final decision in God's hands. We asked God to speak through Dr. Durrani. God is the one to be praised here. It was our willingness to let go of control of the situation and allow God to direct our path.
This is not to say that she will never need the surgery. She will be followed by Dr. Durrani and if and when she does develop any of the symptoms mention above, we will know the source and know what to do for her at that time. Until then, we will trust that God knows what He is doing. It is a leap of faith to know that your daughter's head is not attached very well and be okay with that. We cannot live in fear.
Currently she is attending a conference on leadership. She fell last night. I am staying the same hotel and the directors of the conference called me right away. I took her to her room and discovered that she had missed a total of 4 of her scheduled medications. I think we found our smoking gun! I was able to give her her medication, some salty snacks and lots of water. She felt so bad when she realized that her fall was due to the lack of medicine.
After about 2 hours, she was able to return to the conference and even participate in a variety show that she had organized! Her classmates cheered when she sang a song in Japanese.
God is so good!
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