The long awaited appointment with the neurologist was earlier this week and it was a complete disappointment.
The neurologist was not at all familiar with Chiari Malformation and was not comfortable treating it. She focused the first half of the appointment on all the previous misdiagnosis before I was diagnosed with Chiari Malformation, starting when I was 15 years old. She went into how she knew a few of the neurologists who I saw or knew of them. Which made it awkward, because their diagnosis were wrong and she seemed to miss that part.
My doctor and physical therapist recommended to me that I write out a list out of all my symptoms and to try and notice if there are correlations between them and to make notes. When I pulled my list out she waved her hand and told me she did not need to see it.
She kept interrupting me and did not let me ask any questions. She redirected everything I said back to migraines and the medication she thought I should take.
We didn’t discuss Chiari or brain surgery. Anytime our conversation drifted over there she just redirected it and would not let it happen.
When I got to the car and read the after visit summary it did not reflect the appointment at all. She had written that she discussed all these things with me that she did not, and the stuff we did talk about was not reflected in the notes. There were also inaccuracies about symptoms which will add to the confusion with the next doctor.
I felt myself shut down during the appointment because it was just like every other appointment with someone who does not understand my diagnosis. It was so frustrating and discouraging. I want to understand what is happening in my body and what is causing some of my symptoms.
We called my doctor’s office the day after my appointment and talked with a lead medical assistant and shared our frustrations about the appointment. She looked up on her computer “Chiari Specialist” in Oregon and Washington but it only brought up neurosurgeons, which is not what I need because I already had surgery.
So, I am back to being stuck in between not needing to see a neurosurgeon, but not being able to find a neurologist.
We are regrouping now. I am not sure what to do now. I just want to understand what is happening in my body. We are thinking that we may reach out to different groups like Conquer Chiari and Chiari Project or reach out to groups on Facebook to see if they have any recommendations.
In the meantime, I am still getting weekly infusions and I am going to try a monthly injection that is supposed to block the pain receptors in the brain stem. My brain stem was compressed by my skull, so this injection (Emgality) could help with that.
I hope this helps because I have more days with a migraine than I do without during a month and head pain daily.
I did the first injection today. It takes 10 seconds to do, but with my nerves it took me about 40 minutes. It felt like a wasp sting and burned. Since it was the first initial dose, I had to do two doses. The second time I was able to work through my nerves a little faster, but it did not help that I knew what was coming. I will try it for three months before it is consider a failed medication and I try something else.
Still waiting and still praying,
Shae
Weathering Chiari 