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Nikita’s Story (Chiari Malformation)

Nikita's Power Story ChiariMy name is Nikita. I am a 17-year-old mother of a 4-month-old boy. About two years ago, I started getting really bad headaches and fainting. I went to the hospital, and they told me nothing was wrong. I had an MRI, and they said it was clear. I went home and still suffered the horrible headaches for a few months.

I went to my local doctor and told them I was still getting the really bad headaches. They sent me for another MRI scan, so I called straight away and booked it for two days later. I found out I was pregnant the day after going to my doctor’s, so I called and canceled the MRI and left it at that until I fainted when I was pregnant. I went to my doctor, and they said it was just high blood pressure. So I went home and was told bed rest, so that’s what I did.

I had my son, and all of a sudden, I got worse. Now, my headache never goes away. It never gets better. It either stays the same or hurts a lot more, so I decided I was going to get another MRI scan. I got my results two days later, and my doctor called me in. I went to the doctor, and I was told that I have Chiari malformation, type 1. Being a young mum, I got really freaked out. All I could tell myself was to be positive, and all of a sudden, I blurted out to my doctor, “Can this kill me?” She said she has never dealt with anyone that has lost their life to Chairi malformation. All I could think was, so that wasn’t a “no, it can’t kill you.” It was just she’s never dealt with it.

I now have worse symptoms than ever. I randomly swell and bruise and always have a headache. My hair falls out in chunks, and I get a rash. I am always taking medication. I wanted to post here because I need some support from someone who knows exactly what I am going through. 🙁 I see a Rheumy in August!!

Nikita
Australia
Submitted 07/17/2015

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.

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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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2 comments

  1. michele Bradford

    There are many groups for people like us on Facebook there may even be one in your city. If you want please call me 816-446-6929 I have been decompressed since 2011 and at the age of 40 I was diagnosed after many years of problems and mis dxs. I am praying for you and with you.

  2. Hey girl, I can relate on so many levels! My name is Ashley and I also have a chiari malformation. I was diagnosed 4-5 years ago as a young mom also. I was 21 with a 12 month old. I know it can be so overwhelming and scary. Especially as a mom we worry about how we will care for our kids. I hope you have a strong support system. Having people around me help has been very difficult for me to accept bit has also been vital for me to be ok. I has all the same symptoms as you – the headaches being the worst part. I have also recently been diagnosed with other illnesses (mostly auto immune!) and sometimes it becomes a lot to handle. BUT today I am 25 with TWO little girls (ages 5 and 18 months). They are my motivation to get out of bed every single day. They push me to take care of myself, to rest, to take my medicine, and go to the doctor. I know it’s hard right now and feels very overwhelming. But thankfully this doesn’t have to be a death sentence. There are solutions – options. Hang in there and stay strong. Having chiari is a journey. If you want to talk feel free to reach out!

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