Sometimes you have these totally awakening moments that really make you take pause and think. I had one recently and it's been on my mind every day since.
My Chiari has been causing an increase in problems with my voice. I've always experienced my voice becoming hoarse more easily than most people, but these days it can take as little as 15 minutes to get there. There are days when I feel as though half of it is spent battling laryngitis. So I had someone say to me recently:
But didn't you study theater? I guess it's good that you don't do that for a living.
....RIGHT! The ah-hah moment hits! I made a very conscious decision when studying theater in college that being a working actor for my profession was not what I wanted to do. Although it's in my heart - it is a passion and an arena where I feel at home - I wasn't ok with the type of lifestyle I would have as a working actor (especially not one in live theater which is all I wanted to do). However, had I made a career out of acting, I would be in serious trouble right now with my voice! Let's see.. I could make a living in silent films...? Because those are popular in 2021.
This experience has forced me to find the silver lining of the path I chose professionally even though it isn't what I initially set out to do.
On April 17, 2019 I had an experience that will forever change my life...
I woke up that morning with a splitting headache though it gradually improved through the beginning of my work day. Mid afternoon I was on a phone call at work when I began to experience strange visual sensations, tingling in my face, lips, tongue, right arm and hand, and then my speech went. I was having difficulty getting words to come out, jumbling them when I did and I was speaking words that I wasn't actually thinking of. I was fairly certain that I was having a stroke. I ended my phone call, sat on the floor of my office for about 10 minutes and tried to breathe calmly. It was about 10 minutes later when I felt like I was "with it" again and I knew that I needed to get medical help.
My husband arrived and rushed me to urgent care. The urgent care physician believed it was possible that I had experienced a transient ischemic attack, which meant that a stroke could occur soon, so I was immediately taken to the ER. The ER team decided to do a physical exam, extensive bloodwork, as well as a CT scan. We talked at length regarding my medical history.
Here's where I need to side note to my medical history...
....For as long as I can remember, I have experienced intense headaches. I have a clear memory of leaving school in 2nd grade midday because my headache was so bad. When I got home, I remember lying on the floor at the bottom of a staircase since the pain was so intolerable and I could not bring myself to climb the stairs. As I got into high school and college, the headaches became less frequent, though not necessarily less intense. I have received a handful of CT scans as well as at least one MRI due to these headaches and the fact that brain aneurysm has a history in my family. Nothing concrete was ever found. About five years ago I was at breakfast one weekend when I began to see flashes of purple and yellow. These flashes morphed into what I would describe as prism shapes, and eventually blind spots. I went to the ER where the doctor asked if I had ever had a migraine before. I said, though sort. of questioning my own experience, that I thought I had many times. The doctor lightly chuckled and said that this was a "real" migraine and I should go home, take some Advil and brace myself for a very bad headache. I experienced 2-4 migraines like this annually from then on, but because the ER doctor had basically told me this was normal, I never spoke to anyone about it...
...And so, when in the ER in April 2019, I began discussing these migraine with aura (as I have now learned they are called). The doctor said that my visual disturbances were not normal and I would need to see a neurologist. After a little waiting, the ER doctor came to speak with me about the results of my tests. Bloodwork looked great - despite a spike in blood pressure most likely due to the fear and anxiety surrounding what had happened to me - but there was an irregularity on my CT scan. First, the doctor explained, they believed I experienced a complex migraine which can mimic the symptoms of a stroke. We do not know why I experienced this. Secondly, the doctor asked almost in disbelief if I was truly unaware that I had an Arnold Chiari Malformation. Huh??? A WHAT?! The doctor explained that the rare condition is generally congenital thus his surprise in being the first to tell me I had it, since it should have been caught on one of my previous CT scans and MRI. As he began to explain the condition, I think I mentally blacked out. I didn't register anything he said to me except that they wanted a neurosurgeon to look at my MRI before releasing me from the hospital. "A neuroSURGEON?!", I thought. No no no; this couldn't be happening. I made my husband search the internet for everything he could find on this condition while we waited for the ER doctor to return after consulting a neurosurgeon.
I didn't end up needing immediate surgery and have had to visit with a neurologist on a regular basis. My Chiari was determined to be a "moderate" case, but because the symptoms do not interfere with my every day life, I have chosen not to see a neurosurgeon. They would most likely not recommend me for surgery at this time. Because my migraine with aura are so infrequent and dissipate with OTC pain medication and sleep, I currently do not need to treat them with regular medication.
The aftermath of all this? It took a long time to begin to digest. I went on as if things were back to normal for a year before I began to comprehend what it all meant. The migraine with aura, we don't know why I get, but it does increase my risk of stroke. I finally understand fully that it's important for me actively reduce that risk to the best of my ability. I think the reason it took so long to understand that is because I think "I'm young and healthy; that won't happen to me", despite the fact that I am being told otherwise by the medical community. I have also started to dive deep into what research is available on Chiari and I realize how much it may be affecting me (though still not enough to inquire with a neurosurgeon at this time).
I am thankful that all of this information has started to settle in and that I'm taking it seriously. I can analyze how healthy I eat, my exercise habits, take the medications that I should be taking, and re-evaluate my life to ensure that I am doing all I can to live long with the conditions that I have.
What is Chairi? To give a very basic overview: it's a malformation of the cerebellum where the cerebellar tonsils extend beyond the base of the skull and crowd the space where the top of the spinal cord sits. There are four types of Chiari malformations which vary in severity and symptoms.
For information on Chiari Malformation, please see these helpful resources:
The National Organization of Rare Diseases
National Institute of Neurological Disorders and Stroke
American Syringomyelia and Chiari Alliance Project
Model of Chiari Malformation
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