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

There was a breakthrough this week!

I am grateful to share good news! Physically, this week has been a rough one. I’ve been struggling with a migraine, nausea, head pain, numbness and tingling and a heavy fatigue. I had the infusion clinic on Monday, physical therapy and did my second round of the Emgality injection on Tuesday. I’m really working hard on building my neck muscles and I’m sure that has contributed to the headaches. 

Now the good news -A few days ago, we followed up with calling the neurology department (my primary care’s office asked us to) and requesting a conversation with the manager to discuss my last appointment. We put a request in and they said it would take a few days to get back to us. That was no problem to me because my hopes were pretty low. I’ve been feeling a lot of despair over this whole situation. 

Yesterday afternoon, we got a call back from the manager of neurology and neurosurgery wanting to hear what we had to say. We spent over an hour on the phone with her and shared with the whole story of my diagnosis and the lack of care I’ve had. I was getting restless during the call, I felt a sinking feeling descend on me and dread over the outcome. 

My physical therapist said that I should ask about a “care coordinator”. I have talked with my primary care’s office and asked about a case manager they said that is for people with a chronic diagnosis. Afterwards we realized that would still apply to me. I’ve just been coming up against so many roadblocks. 

The woman we talked with yesterday was so kind and understanding. We told her that I want the inaccuracy in the notes from my appointment fixed or a note in there saying it was inaccurate. We also went over how I have been stuck going back and forth between being sent to neurology and neurosurgery. 

She listened to us and then laid out her plan. She asked if she could scheduled me for an appointment with a neurologist who is new to our system, but has a ton of experience as a neurologist. She said he is known for his bedside manner and would listen. She said that’s who she would send her child to see. She also said she would have a pre meeting with him to go over all my notes and records before I met with him. 

She asked if I wanted to look him up and research him and then call her back to schedule. I just wanted to schedule, I’m tired of waiting.

She told me that she will be my advocate in the system and to call her for anything. 

The appointment she scheduled me for is this Thursday!! I was not expecting it to be that soon. 

I am still wanting to be hopeful, but I’m feeling cautious. I am praying this time will be different and a step in the right direction. Please be praying with me for this appointment. I have been listening to Austin French’s song Rest For Your Soul because it speaks to my heart. I have been feeling so troubled and weary over everything. I am praying for change and waiting on a miracle, with a list of unanswered questions. I never imagined that I would be diagnosed wit a chronic neurological condition or have brain surgery. This is not the life I imagined for myself or wanted. It has really been weighing on my mind and heart and I just feel weary and burdened. I am clinging to the promises of God. That He will be my shelter and my peace. That I will find rest for my soul and a peace in Him, because I do not carry this alone.