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Angela’s Story (Chiari Malformation)

Angela's Story Chiari MalformationWe all have a story to tell, and this is mine. This is my journey to conquer Chiari Malformation. I have a story to tell, a journey set before me, and I will fight. I AM A WARRIOR!

I had never even heard of Chiari until around January 20, 2015. My parents and my hubby and I were playing Heads Up, and we were all laughing. My head started hurting, and I said, “I hate when I get these pressure headaches at the back of my skull when I laugh.” My mom said, “That’s not normal.” I told her I always get them.

I’ve been having headaches since I was a child. I remember my mom telling me I was too young to get headaches when I was little, but I’ve lived with headaches and many other symptoms for as long as I can remember. I’ve researched every symptom I’ve ever had, except for the horrible pressure at the base of my skull when I laugh. So, I googled “Pressure at the base of skull when laughing.” The first thing that popped up was Chiari. I researched Chiari further. From what I’ve learned, I’m a walking billboard for Chiari.

Chiari is a disorder in which someone’s brain, the Cerebral Tonsils part, is being pushed through the bottom of their skull through the Foramen Magnum, which in turn compresses the spinal column and brain stem. It s a progressive disorder. There is no cure.

I’ve been in and out of ERs and seen so many doctors who could never figure out why I’m in so much pain. Friends and coworkers talk about me behind my back and say I’m a hypochondriac or “Omg, is she sick again?!?”

One of my symptoms that kind of makes me giggle, well, not really, is my balance issues. My hubby gave me the nickname Ms. Tipsy because I’m always losing my balance, lol. Even my coworkers call me Ms. Tipsy. Over the past 20+ years, I’ve seen neurologists, orthopedic surgeons, psychiatrists, physical therapists, and numerous primary care physicians, trying to get relief from my pain. They have said, “Oh it’s stress” or “migraines” or “tension headaches” or “you should start eating better,” blah, blah, blah.

My neck pain and headache was so bad last night, well heck, most nights, I just laid in bed and cried. No one knows this pain except for the ones living with Chiari and those who haven’t had the right diagnosis yet. I’ve set up an appointment with my PCP so that he can refer me to an NS that I found in my area that treats Chiari.

I have so many symptoms. I’ve made a long a$$ list to show the NS. I’m so glad I googled “Pressure at the base of skull while laughing.” I would have never have heard about Chiari otherwise. That pressure is so horrible. It hurts to touch it. Also, over the years, I’ve learned that when my neck pain gets bad, then I know I will get a severe headache that travels from my neck to my forehead and behind my eyes. I live with dizziness and poor balance EVERY DAY!! I have heart palpitations (Premature Atrial Contractions), numbness and tingling in my hands and feet, insomnia, depression, panic attacks, fatigue, sleep apnea, cervical kyphosis (opposite curvature of the cervical spine), poor memory, and ringing in my ears. When I lay down, I get this pressure in my ears, and I can hear the pounding of my heart. My hearing is getting worse. Sometimes I get this pain in my throat. It’s like this weird pressure. It reminds me of what someone would feel if they were having an allergic reaction, and their throat was closing up. My symptom list goes on and on. Also, I can’t look up or down for more than a minute or I’ll regret it and have severe neck pain for days. That’s a difficult problem to live with.

I’m so thankful that I found this page and a few others like it. It is helping me to better understand Chiari. I’m looking forward to an appointment with an NS. I pray I’ll have answers soon and get some relief.

Submitted 02/24/2015

The informational content of this article is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.

This story is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.

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  1. Susanne Flynn

    My daughter was diagnosed today at age 12 with Chiari Malformation and will be getting surgery asap. Can anyone please tell me what the surgery is like and the recovery?

    • Hi Susanne........I'm Kellie

      Hi I’m Kellie and I just had Arnold-Chiair malformation type 1 surgery on March 17, 2015. It took about 4-5 hours and then I spent a week in the ICU. Most of the time people only spend a day to 2 maximum in ICU, I just happened to like the nap way to much, LOL, six kids have away of making you look for a nap. Now, with your daughter being so young, in positive she’ll do great and have a speedy recovery. Honestly, I know I was in a lot of pain, but the doctor and nurse’s kept me very well medicated and it really helped. When it comes done to it and you compare it to other brain surgery’s, it’s like the baby of all brain surgery’s.
      You’re daughter needs you to show her how strong and confident you are and even when she’s not she’ll feed off of
      Best wishes to you and your family,
      Kellie O.

  2. Hi Susanne........I'm Kellie

    Hi Susanne…….. Please let me know how your daughter is doing. Be hugs and prayers to you, just stay strong and always have a hug ready it means a lot! Let me know when her surgery is okay, I’m sending out a warrior’s prayer as we speak! 🙂 I don’t know if this gives you any comfort toward your daughters situation, but I’m doing great and I’m sure your daughter will do even better than me, because she’s a kiddo! Take care, Kellie 🙂

  3. Tracy Fapetu

    Hello I’m going through the same things I never could figure out what was going on and I even lost my job because my co workers used to say things like why she always calling out or why she always sick what’s wrong with her and even with me being the assistant manager the manager even went against me now that I’m diagnosed I better understand my problems but I had never heard about this before so I started research and now its messing with my vision uuuuuugh I get depressed ringing in the ears muscle spasms I can’t deal my balance and memory is getting worse but I’m fighting my husband sometimes wanna break down and cry but he stays strong on my behalf but continues to make me smile keep fighting

  4. Jessica G.

    Hi Angela….Any update on you apt with the NS? I will be seeing a NS tomorrow after being diagnosed 11/28/2016. I am still processing it all. But its great to finally have an answer. I hope you are doing well.

  5. Jana

    Hello everyone Im 39, best of luck and may God bless you all. I’ve been dealing with severe Chiari Symptoms, just like you Angela. It’s been going on for almost 3 years now everyday. Before that was off and on, but I’ve always had migraines since I was little as well. Much like you, I was brushed off stating it was just migraines, anxiety etc. My biggest complaint is my off balance as well. I definitely have pain all the time every where and the pulsating feelings in the back of my head too. My eyes don’t always want to focus and was told I have a little nystagmus.
    My symptoms have worsened and now I have scheduled decompression surgery Nov 1. I’m super nervous but eager to feel better.
    I was also diagnosed with hypermobile EDS, so they checked for cervical instability which could also cause a lot of problems and should be ruled out before any type of Chiari decompression. They check that with an upper MRI and also evaluating you in the office.
    lots of hugs to all

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