Weathering Chiari

These last few days, leading up to this morning, I have been filled with stress and anxiety over the neurology appointment scheduled for this morning. I could not imagine how the appointment would go – whether good or bad. My prayers over the appointment have been simple. I feel like sometimes I do not even have the words to to pray what I am feeling. My prayer was for a kind and understanding doctor and a clear next step.

Those prayers were answered! The neurologist was so kind and gentle. He listened. I brought my notes compiled from all my symptoms, that I am always asked to keep. He went over all of the symptoms with me and asked me follow up questions.

He started the appointment by telling me that he spent some time reading through my records and that he thought he had a good idea of what’s been happening. We talked about Chiari Malformation and he asked a ton of questions about my symptoms before surgery and how they have changed after surgery. He did a physical exam and then I gave him my printed notes I brought.

He took a few minutes to read them and the said that my symptoms are “intriguingly frustrating”. We discussed the symptoms and he did another physical exam and said that he would like to do some more testing. I am still waiting for the EEG that was ordered at the last appointment, they gave me the number to call and check in with that.

The neurologist also placed an order for a four hour neurocognitive test to evaluate and get a baseline of where my cognitive symptoms are at.

The neurologist did not give me a diagnosis or share too much of what he was thinking. I really appreciate and respect that, especially after having so many misdiagnosis’s and doctors jumping to wrong conclusions, or thinking out loud. I follow up with him in three months.

The after visit notes were the most comprehensive I have seen. He restated the key parts of my notes I brought and summarized my new symptoms really clearly. In his notes he wrote that he thought I would benefit in the future with a multidisciplinary team approach because of the complexity.

While I still do not have a solid answer, I do have a next step and I felt heard by the neurologist. Thank you to everyone for your steady prayers and encouragement.

Blessings,

Shae

“But the LORD stood with me and strengthened me.” – 2 Timothy 4:17