National Chiari Awareness Month – 2018

The month of September is Chiari Awareness Month. In May of 2013 I was diagnosed with Chiari 1 Malformation and Syringomyelia and my life since then has changed – tremendously. I remember going recently to a store, because it’s a place I visit regularly – they’re a sweet Vietnamese family, I’ve got the chance to get to know them. We were discussing Chiari the last time I went there, one of the daughters said, ‘besides going to the hospital when I was born, I’ve never been there.’ I was speechless, I know my way around – just about, every hospital in my area, I even know what hospital not to go to because they lack ‘my’ department – neurology. The difference between someone with Chiari Malformation, Syringomyelia, among many other different illnesses, is that we know too well what is like to be at a hospital – while others don’t. It’s an unfortunate truth.

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There are currently four types of Chiari Malformation and each are classified by the severity of the disorder and the parts of the brain that descend into the spinal canal. As you can see, I have type 1, this is when the lower part of the cerebellum called the cerebellar tonsils extends into the foramen magnum. This is where only the spinal cord would otherwise pass through. Chiari unfortunately goes un-diagnosed, and is first noticed during adolescence or adulthood, usually by accident during an examination of another condition. As it happened to me, I went into the ER in May of 2013 for what was suppose to be a quick ‘trip to the ER,’ but turned out to be far more serious than your typical ‘headache.’

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What surgeries have I had for Chiari 1 Malformation and Syringomyelia? As for the Chiari, in May of 2013 I had emergency posterior fossa decompression, here the surgeon created more space for the cerebellum as this relieves pressure on the spinal cord. At this time the surgeon also made an incision on the back of the head and down the neck area, and removed a small portion of the bone at the bottom of the skull, this is called, craniotomy.

In November 2017, for the Syringomyelia, I had spinal laminectomy in which they placed a syrinx shunt – this shunt (a flexible, tube like device, according to my surgeon it’s also less than the size of a hair strand in diameter) will remain in my body forever. The syrinx shunt diverts the fluid from the syrinx into another space in the body where it can be absorbed. There are a few locations where the fluid can be absorbed and this is what differentiates one shunt from another. The shunt I have is absorbed in the peritoneal space, also known as the abdomen. The space location is determined on the patients case and the surgeons personal preference.

Why spread awareness for Chiari Malformation? Without awareness there is no funding, without funding, there is no research, without research, there is no cure, without a cure, there is no hope. However, if not in my lifetime, maybe another’s, but I pray that there will be a cure for Chiari – someday.

Today, I’m still living with a number of ongoing symptoms such as difficulty swallowing, headaches, vertigo, imbalance, difficulty concentrating, etc. which also includes chronic pain. I need to be monitored for changes that can occur in the CSF flow or cerebrospinal fluid. I’m currently experiencing severe numbness on my left side, especially in my face and tongue – you’d never know it if you’d see me. However, I finally have a great neurological team that is helping by monitoring me, via MRI’s and managing my pain levels, via medication, as best as they can. It’ll always be a process, but it’s a process that with patience, it’s as tolerable as it can be.

The perfect cure for worry, is to trust in God. 

And in light of my series ‘Happy Meme Monday’ I’ve decided to include some Chiari Malformation memes. Enjoy.

These memes – sum it all up. Have a blessed Labor Day.

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Visit my online store for Chiari Malformation awareness merchandise.

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Mystery Blogger Award – 2

Mystery Blogger Award

I want to thank my fellow Chiarian blogger over at Simply Chronically Ill for this amazing nomination! There is nothing like getting recognized by fellow bloggers and this amazing soul is phenomenal and her blog is filled with amazing content, her poetry is both thought provoking and intriguing. She also gives tips on how to save and links to great deals! What’s better than saving?! Thank you again and if you haven’t gone to her blog, pay her a visit! I appreciate how these awards allow you to get to know me, they’re fantastic!

Here are my questions for my nominees:

1. If you could cure one disease, what would it be and why?

This here, this here, is a great one! I would find a cure for Chiari Malformation + Syringomyelia – that’s two not one, it’s OK! This thing is both painful and exhausting – find a cure already! I have six babies, SIX, find it now! 😉

2. If you could speak any other language what would it be and why?

Let’s see, my little ones and I speak both English and Spanish and at times I feel it just isn’t enough, so we should definitely try a third! I would speak – and I must thank Google for this, the South Korean dialect of Hanguk. I have Korean descent and would love to dive into something from the culture.

3. If you could do your life over, what is one thing you would change?

Oh wow, this is a bit deep! Although there are times – many, many, many times, where I think my life made a wide turn – or wrong turn, into what I thought wasn’t in my ‘plans’ I am a firm believer of how things change, people change and my life changed for a reason. I have chronic pain and an illness that in 2018 – today, has no cure, and although at times it may seem unfair, unbearable or frustrating, there is nothing God would allow in my life that I wouldn’t be strong enough to bear. 🙏🏽

4. What is one word you wished you heard more often?

Hello. Can we get a simple ‘hello?!’ How hard is that?! It’s often forgotten and dismissed as something that’s not important. I think a simple hello has the power to change someones day, to brighten someones day, to transform an inner most feeling someone may be having on that particular day. Maybe you’ve gone somewhere, entered a room or simply thought of someone but didn’t have the thought or courage of following through – because your excuse is always not having the time, say hello, send a hello to someone, to a friend, to a family member, hell to your spouse that woke up before you saw him/her leave the house! Send them a message and say, hello! So simple, yet so thoughtful and TRUST they’ll appreciate it! Amazing.

My nominees are:

My Li’l Place

Searching For My Inner Zen

Magic In The Everyday

Dorky Mom Doodles

The Godly Chic Diaries

Pink Herald

Mrs. Mother Dirt

Ramblings Of A Wonky Girl

Thank you and you’re welcome, to my nominees for participating. You and your blog are fantastic and deserving of this award – I can’t wait to read your answers!

Here are my questions for my nominees: 

1. If you could cure one disease, what would it be and why?

2. If you could speak any other language what would it be and why?

3. If you could do your life over, what is the one thing you would change?

4. What is one word you wished you heard more often and why?

Thank you Simply Chronically Ill for these questions, they’re great!

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