Chiari Malformation Awareness Month

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).

When I was zombie Lauren by choice.

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.

My brain looks more like the one on the right.

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.

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I happen to stumble upon Ana’s blog a couple of weeks after learning about my own brain.

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.

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Brendon and his family will be participating in a Chiari Malformation Walk in Charlotte, NC this afternoon.   You can find his website here.

⁃ 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.

Alyson took this flower photo, as well as the amazing featured photo on the top of the blog.

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.

Attempting to get my cerebellum back into my skull.

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.

On September 22, Niagara Falls was lit up in purple in honor of Chiari Malformation Awareness month

22 thoughts on “Chiari Malformation Awareness Month

  1. Glad to see you connecting and sharing your experiences with others who are in the same boat. This is a very empowering to read.

    Liked by 2 people

  2. Love love love this! It’s incredible, how Chiari can connect us in such a deep level. You become diagnosed with such a rare condition and you live with such chronic pain that you begin to think you’re alone in your pain. The greatest thing is that, we’re not! You mention people thinking that you’re ok because you’re going through your day. The thing that people don’t understand is that, WE HAVE NO CHOICE. We have lives that continue to move forward with or without our chiari diagnosis. We have husbands, children, pets, homes, that need to be cared for, how do you stop, so you stop?! No, we need to keep going, I call it pushing, pushing through my day because there’s no one that can do the things you do.
    I admire your courage and your resilience, blessed are you to have found out about your diagnosis. As you mentioned many many people go undiagnosed. I went undiagnosed a year before, was rushed by ambulance to the ER with a pounding headache – couldn’t even open my eyes. They did MRI, did spinal tap, gave me a Tylenol and sent me home. A year later the same thing happened, this time my husband took me to another hospital, fortunately the ER doctor there was able to find the Chiari Malformation. It’s been a whirlwind ever since, the symptoms, the headaches, vertigo, nausea, doctors appointments, surgeries – of which are not a fix, but relief! A minor relief! That’s another thing, haha! People think decompression is a fix to Chiari, no, it’s not, absolutely not.
    Thank you for such a phenomenal post on something we live with daily. Happy awareness month! 😊🙏🏽

    Liked by 1 person

    1. I’m so glad we found each other in this messiness! I guess I am “lucky” that I found out early on, even if not in a straightforward way. I’m sorry it was missed the first time around for you. The whirlwind needs to slow down to a breeze. I admire you for doing all that you do while pushing through pain & hope that more than minor relief is around the corner.

      Liked by 1 person

      1. Yes, likewise, I’m so glad we can find support in one another. There aren’t too many living with Chiari, to find someone that has the same, is comforting.

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  3. This is an amazing post. You are helping so many people and I hope it is helping you too.

    Liked by 1 person

  4. Very brave girl. Hope you are feeling ok and that Jonah’s arm is OK

    Sent from my iPhone

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    Liked by 1 person

  5. Thank you for sharing your story! Thank you for showing vulnerability and show us, your followers…life goes on. We learn to make the best of it (sometimes 😉).

    Liked by 1 person

    1. Thank you for your comment& for following! It’s not always easy, but I am certainly trying to keep life moving!

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  6. This is so cute, and really inspiring. It’s crazy how people can touch our lives for the best!

    Liked by 1 person

  7. Wow amazing story you have and so glad you have been able to share it and connect with others. That is the beauty of the internet it really does help people to connect in situations, that would have previously made them fee very isolated. Brave for you and being brave enough to share your experience with others.

    Liked by 1 person

    1. Thank you! Finding others who have this has definitely made me feel less isolated. The internet has many downfalls, but certainly has way to connect people.

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  8. It’s really scary how little importance the doctors are putting on something so devastating! It’s so great that you are sharing your story so that more people can become aware – I had never heard of Chiari Malformation. As someone who also lives with chronic pain (of a whole different sort), I really understand how frustrating it can be when people assume things can’t be that bad because we’re still living our lives. We have no choice but to keep living our lives pain or no pain! Recently, I had a therapist tell me that I’m resilient – it was hard for me to hear, because I don’t feel resilient. I feel like I’m broken and clinging to the edge. But, when I stopped to think about it, I guess I am – and you are too. Keep living your life. Keep fighting for awareness. And know that you’re not alone in your pain. I wish you many pain free days.

    Liked by 2 people

    1. Love this comment, it spoke to my heart. So very true, people can really misunderstand our painfully bad days for good days, because we simply keep moving. I keep moving when in reality, I want to go to bed and lie in a fetus position until my head stops spinning. And things said to me – like yourself, being resilient, being positive, having a smile on my face, just get me feeling frustrated. I’m in pain – chronic pain, but I also don’t want to be seen with a frustrated angry face 24/7! May our days be filled with smiles that hide the pain we’re in and may we surround ourselves with supportive loving people.

      Liked by 1 person

      1. You have such a positive outlook – I know it probably doesn’t feel that way or even look that way all the time but it’s so important to your mental health! Keep fighting 💚

        Liked by 1 person

      2. Yes, I agree completely. The children are also a huge help, they keep me going even when I don’t want to. Thank you so much, and to you as well. You are worth the fight! 😊🙏🏽

        Liked by 1 person

      3. That last sentence includes words to live by, Ana!

        Liked by 1 person

      4. Yes, thank you! 😊🙏🏽

        Liked by 1 person

    2. Thanks Nicole! I had never heard of it too until a few months ago. I think resilience is just being able to get out of bed in the morning and go about your day, in spite of pain or whatever obstacle that has been thrown at you. I wish you pain free days as well!

      Like

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