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.

Image result for chiari awareness month

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.

A-

Visit my online store for Chiari Malformation awareness merchandise.

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54 thoughts on “National Chiari Awareness Month – 2018

  1. Hello Ana Thank you so much for sharing all this information about chiari. Plus I never knew September was Chiari Awareness Month !! I will have to search for Calendars with this on them. I know it is important that more and more people become aware of this Disease called Chiari !! Have a blessed Monday and a wonderful Labour Day with your family Ana !!

    Liked by 3 people

    1. Thank you so much James for your thoughts. Yes, it is. It’s imperative that illness such as this one – Chiari, become less rare, unknown, unheard of and more people are in touch with the realities others have to face. This is for all illness.
      It’s a very raining day around here, as we have tropical storm Gordon going through us. So, in doors we’ll be 🙂
      Likewise James, blessings to you!

      Liked by 1 person

      1. Thank you for the deep response on chiari especially. But also on all illnesses. We could create a super excited blogging community supporting each other as I have seen done many times all over. We do help in our unique ways on WordPress.com Lets keep it going forward !! Love and smiles in Support !!

        Liked by 1 person

  2. Thank you for this information. I’m going to post it on my FB Page and my Neighborhood app too. My family has been in similar situations with Melanoma and Severe Crohn’s Disease. People may not have heard of it or they know a little about the disease, but don’t really “know” about it.

    I reblog a post every Saturday and will use this one for this week to help with awareness. Enjoy what’s left of the holiday.

    Liked by 2 people

    1. You’re welcome Debbie, I’m humbled. Yes, we either have heard of these rare illnesses and just don’t really bother to go past that – until you have to. I understand your families situation.
      Thank you for the reblog, I appreciate your support! If we can educate and so even get one person to know about Chiari and become aware of the condition, it’ll be phenomenal. 🙂

      Liked by 1 person

      1. Yes so true about awareness. I didn’t know anything about Crohn’s until my 20 yr old son was diagnosed. He’s better now but it’s a lifelong, every 8 week infusion for life. I have a niece who is 48 and has post orthostatic tachycardia syndrome (POTS) which has a multitude of symptoms. Plus dysautonomia which is getting more awareness as well.

        I have already posted on my FB Page and the Neighborhood app 5,000+ people use our Neighborhood app. Awareness is the key!

        Liked by 1 person

      2. Yes, it happens that way, I’ve heard of Crohn’s, though not in depth, I think 20 is the age where most are diagnosed with it. So glad he’s better but as you mentioned, it’ll be a lifelong battle. But with much patience and inner strength, we’re getting through it. And POTS, wow, so many illnesses and debilitating conditions. I feel like they’re endless. It’s also amazing to know there are so many fighters out there, either fighting for themselves or for someone they know, but fighting none the less.
        Unfortunately this is the case for so many diagnosis, many only know the surface of the illness, not in depth information.
        I appreciate your support Debbie! I’ve never heard of the Neighborhood app and to know there are that many people on it, is incredible! Amazing! Yes, awareness in educating people is key, you are absolutely right. Thank you 🙂

        Liked by 1 person

      3. If you have an iPhone it’s on there App Store. It will ask you to enter your zip code. Then you’ll see “neighbors” in and around your surrounding area. People post lost pets, alerts in the area, suspicious people or things they have seen. It’s pretty handy I actually post my blog there 1 or 2 times a week. Have a great night!

        Liked by 1 person

      1. Doing very well between the honey-do list, work, binge watching paw patrol with little man and trying to catch a nap every now and then… 👍

        Liked by 1 person

      2. I think the honey-do list would get trashed around here, I have to go on a ‘one thing’ at a time basis. My husband say’s, as a Marine, he destroys, not put things together. Eek! Haha. Or is that just an excuse?! Hmm, maybe it is!
        Nice! I know the song too well. This house is constantly playing, Peppa Pig, Garfield, Mickey Mouse Clubhouse, Masha and the Bear, to name a few. You can sneak a channel change every now and then, before you someone is crying because the channel got changed. Because you know, how dare we change Peppa?! We can’t be that savage!

        Liked by 1 person

      3. Yep! I know Peppa, mommy pig, daddy pig and George “grrr dinosaur” pig like our own family. And miss rabbit that has every job in the town. Lol.. 🤔😒😳 I guess this is normal lol!

        Liked by 1 person

      4. Lol! George doesn’t go without having to say, ‘grrr.’ It just wouldn’t be George if he didn’t say it. We’ve caught that too, she’s the hardest working mom in town! You can’t go anywhere without getting a glimpse of her. 😆 That’s not normal, I don’t want that!

        Liked by 1 person

  3. Thanks for sharing your story Ana, you have a wonderful heart. You are a inspiration to other, and your family; you’re in my prayers every week. You have absolutely correct; “The perfect cure for worry, is to trust in God!” Blessings to you!

    Liked by 1 person

  4. Thanks for sharing! My daughter has chiari malformation (among many other things with her rare syndrome) it’s nice to hear an adults perspective. I never knew September was Chiari awareness month. September is also Childhood Cancer Awareness Month, which my daughter also has. I have done a post if childhood cancer, maybe I should done one about chiari malformation too. Anywho, thanks again for sharing 😀

    Liked by 2 people

    1. Hi! Thank you so much for reading the post. You’re so welcome. Yes, September is Chiari Awareness month. I didn’t know it was also, Childhood Cancer Awareness Month. But now that you mention that, Live Like Bella is this month at my little ones school, so yes! I understand now! I will definitely be reading that post, your daughter is the epitome of a fighter and you are both blessed to have each other. Yes, please do a post on Chiari Awareness Month, I’d love to read more on your daughters journey. Since I became pregnant also after my diagnosis, and it’s still not confirmed if in fact Chiari is hereditary, they monitored the babies closely while I was pregnant. They did ultrasound to check for Chiari, before and after the babies were born. It’s something that with today’s medical advancements can be detected long before they hit adolescences. 😊🙏🏽

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      1. I had numerous ultrasounds with Kailanie and nothing showed up. Wish we would have known sooner. Maybe we could have received a diagnosis instead of waiting a year. I post random updates about her in Instagram @living.with.lms, on FB living with Lateral Meningocele Syndrome, and blog navigatinglifewithlms.com.

        Thank you for your kind words, and again for your post ☺

        Liked by 1 person

      2. I was on the fence about posting something for the month of September in reference to Chiari Awareness. As going into details sometimes gets me down. But seeing comments like yours just reminds me, that I’m doing good by sharing my Chiari story. That there’s nothing to hide or to be ashamed of. The beautiful thing about this world is that we’re all different.
        I will look at the Instagram. Unfortunately, I don’t have social media, other than the blog here, but I am so thankful to have found your blog! Thank you Vanessa!

        Liked by 1 person

    1. Lol! No it’s not my name. 😂 No worries! The name for the condition is Arnold-Chiari – although often referred to as simply Chiari, is in honor of Hans Chiari an Australian pathologist and Julius Arnold a German pathologist.
      Yes, you learned something new, I try to learn one new thing a day! 😊🙏🏽

      Liked by 1 person

    1. Thank you! Yes, they say, Chiari may be hereditary. I had three pregnancies after my diagnosis. Thankfully with today’s medical advancement, it can go far enough to be able to detect Chiari in pregnancy before the baby is born. They looked for Chiari in all three pregnancies before and after they were born. Yes, I’ve been blessed to have met a few fellow Chiarians through this outlet since I began. It makes me feel less alone in the Chiari world and more supported. 😊🙏🏽

      Like

  5. Thanks mam for this priceless knowledge…
    And my best wishes are always with you..
    I don’t know the pain of surgery and treatment ..but I have seen it…and I am seeing it…and being strong is the only option
    Lots of love and wishes to you☺️

    Liked by 1 person

    1. Haha 😊 You’re absolutely right, God doesn’t give you more than you can handle. It’s just right – just for you. My cross is just that, mine, for me to carry. Is it hard, yes everyday, can I get through it, with Gods guidance I can.
      Thank you for all your support, I always appreciate it. Hugs to you as well. 🙏🏽

      Like

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