This year has been a bit of a mess for me- first a shoulder injury, which was accompanied by a rough bout of depression. Just when I thought things were improving for me, I was kicked to the ground again. My extremities began going numb. This was followed by a bizarre week where I was essentially zombie Lauren- I had difficulty getting words out of my mouth and getting my legs to move. Like the movie, I was dazed and confused (without the recreational drugs involved). I was set up to believe that I had some discs out of place in my spine. Instead, I learned that my brain was protruding out of my skull. Apparently, this is not a big deal, as it wasn’t even mentioned by the doctor that I saw. I learned about it when reading through my radiology reports while I got my oil changed after the appointment. (You can read about this whole baffling encounter– which includes this doc insulting me, me telling him off, followed by him dropping me as a patient).
This condition is known as a Chiari Malformation. The incidence rate is estimated at 1 in 1,000, but appears to be growing with the increased use of brain imaging to rule out a variety of conditions. Chiari Malformations are structural defects that occur when part of the cerebellum extends below the foramen magnum (the hole at the base of the skull), into the spinal canal. Unfortunately, from what I learned in the past few months, this condition is often downplayed by doctors and is commonly misdiagnosed. There is a laundry list of symptoms for this, which leads for it to be confused with other disorders. There are also a multitude of co-morbid conditions that often co-occur with Chiari that complicate the condition. Only a small number of doctors in the country specialize in this condition, which means that there are often long waits for appointments and individuals may have to travel long distances to be seen. Treatments may include managing symptoms conservatively with medications and surgeries to make more room for the brain in the skull. At this point, there is no easy fix or cure per-se.
Recently, I have become acquainted with others who have been impacted by this condition including:
Ana- a fellow blogger and mom of 6, who was initially misdiagnosed before she underwent two surgeries to treat her Chiari malformation. She’s a super mom and a fantastic writer, who copes with chronic pain on a daily basis. She inspired me to write about my own story.
Jenn – a strong mom of three sweet boys, who home schools her kiddos. Her middle child, who is 8 years old also has a Chiari Malformation. He began experiencing intense headaches at the age of two. His initial MRI was misread and his family was told all was normal. His symptoms worsened and a second brain MRI was completed four years later. His doctor failed to mention the condition to his parents, as well. They read about it in his report on their own as I did. After much pain, he is hopefully on the right track. This kid has a brilliant smile, charismatic personality and great attitude, despite all of this.
⁃ Alyson- a kind soul who I just happen to share a birthday with. She has been to hell and back & lives to tell about it with wisdom and grace that comes from that kind of life experience. She is an avid photographer who has a keen eye for beauty. She has been holding my hand from afar this past month and a half. She has shared her time, perspective, and resources with me.
This story is still very much evolving for me. You may see pictures of me hanging upside down or out somewhere smiling and may think these issues have gone away. That is hardly the case. As I have said before, appearances can be deceiving, which gives us even more reason to be kind to those around us. At some point during the day, I typically have a burning headache in the back of my head, numbness and symptoms of vertigo. I often feel like I am on a highly discounted cruise ship – seasick with the ocean no where in sight. Instead of being pampered, I have to cook, clean and care for my kids & dog as the world rocks back and forth. Fortunately, this is not all the time. Also, these symptoms are on the milder end of the spectrum compared to what my new friends mentioned above have endured. Regardless, I am trying my best to not let this interfere with me living the life I want to live. I know it will, if I let it.
September is Chiari Malformation awareness month, which is why I am choosing to share this post now. With more awareness, there hopefully will be more funding, research and treatments. I have learned my story is far from unique. So many others are misdiagnosed, treated as if they have psychiatric issues, and are ping ponged between doctors. I truly hope navigating this condition gets easier as time goes by.
As for me, I realize it will take time, patience and the right professional to help me to get to the bottom of what I have been experiencing. I am cautiously optimistic that I am heading in the right direction.