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Jana’s Story (Chiari Malformation 1)

Hi, I am wanting to share my story because of all of you!! So Brave and So Strong!!

So… where do I begin? I have had some sort of headaches since I was young. When I was in college I was diagnosed with migraines and put on different types of migraine medicine, which does help when a headache seems to not want to go away with just Advil or Tylenol.

Fast forward to having my first child, I was 29 and ended up having an epidural since they had to induce me. The 10 hours of labor and 50 minutes of pushing caused a severe headache behind my head. The pain medications seemed to help, at that time Chiari was never even thought of. About 2 weeks later, I developed hand pain, I just thought it was from having a new baby and more usage of my hands. That however, did seem to slowly disappear. In my mind now, I wonder if I had some sort of CFS leak that went away.

My headaches were always constant through the months. I also had PMS migraines, so it was hard to tell which headaches were from what. When my firstborn was 11 months old, I became pregnant with our second child. I’m so happy I didn’t end up getting an epidural with him because my symptoms probably would have came full force. He came t0o quick for me to get one!!

When I was about 34, that same hand pain came back and never left. I was tested for many illnesses and the blood tests always came back normal. Thank God they came back normal, but it was depressing to not find answers at that time. I would see my family doctor often, and he did eventually put me on an anti-inflammatory and an antidepressant to see if that would help. I just went with it. I now only take that anti-inflammatory every 3 days.

I kept searching for answers, and trying to exercise and eat healthy and try natural supplements to help. I was jogging all the time and actually feeling good besides the joint pain that I had all over. My hands would hurt, then my feet would start to hurt and then the rest of my body. However, I kept on going and doing the things I always loved to do and taking care of my family.

Fast forward to age 37. We had a new computer program at work that was very stressful, I was so exhausted and noticed my legs were killing me a lot. Things really took a turn on August 17, 2018. That morning, I was pretty tired but had felt better than the beginning of the week. We were planning to go out of town 2 hours with my parents and kids to visit my brother. I got irritated that morning at the kids, like most of us do, and felt a horrible burning sensation in the back of the base of my skull. It lasted for a few minutes and was very uncomfortable.

I was confused about what it was, but just kept going. I grabbed the kids to pick up my parents and noticed after that 15 minute drive I developed a headache. I took some Aleve and about an hour and half after driving, my eyes had jerked and I felt as though I was going to pass out. I was nervous and pulled over to find somewhere to eat, thinking I just needed to eat. I ended up still driving to my brothers and did fine, but felt weird all day. On our way home, I almost passed out again.

A week later, the same thing happened, and I ended up in the ER. I was diagnosed with vertigo. They did an EKG to rule out heart problems and then I was sent home. This was the beginning of the roller coaster of anxiety/panic attacks. To which my family doctor thought I had those and only those. I was put on Ativan, which really took the edge off of the severe balance problems I was having, vision issues and anxiety attacks. I was eventually put on Prozac 10mg, which I’m still on and makes a huge difference. It took a while to wean off of Ativan and find something that worked.

I finally became my own advocate and asked for an MRI and was then sent to a neurologist, who wasn’t very familiar with Chiari. He did tell me that I had an 8mm and to seek several opinions. Which I did, I also had an MRA to rule out artery problems in my neck. I did end up at a Chiari Institute (Denver, they are great) and was told I have Chiari 1.5, where the brainstem has dropped a little with cerebellum.

As of now, I have off balance every day all day, headaches off and on – especially the pulsating headaches behind head. I was also diagnosed with vestibular migraines, so I have dizziness instead of the pain, which almost seems to be worse. My vision has changed and I have little bouts of nystagmus. I have joint pain throughout my whole body and was diagnosed with hypermobile EDS. I have heart palpitations all the time, and I take a sleep medication. I do work full time still, but try to rest when I can in between helping my husband and kids. Being a Chiari Warrior is tough work!!!

These symptoms are so overwhelming. I finally have met with my 4th neurosurgeon and am planning on having a decompression on November 1st. I am very nervous and yet so eager to have some relief. I am giving this to God, only he can give us the strength and courage!! I do think about it everyday, because it’s always on my mind!! No pun intended lol! I plan to repost after the surgery!!

Thank you all and many prayers to all of you who aren’t only dealing with Chiari, but any other illness. We are here to fight and are Warriors for life!!

Submitted 08/09/2021

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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One comment

  1. Susan Stewart

    Hi Jana,

    Thank you for taking the time to share so much information! My daughter has just been diagnosed with Chiari Malformation, and we also live in Denver. I wondered how you are doing post surgey, and if possible, you would be willing to talk sometime?


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