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Jennifer’s Story (Chiari Malformation)

Chiari Malformation Story Everyday is a struggle with my body it seems. Pain and pressure have become my life. Two years ago, after what seemed like forever I finally got an answer as to why my head continued to hurt no matter what I did to try to stop it. After multiple weekly trips to the emergency room the doctor told me I had Chiari. I had no clue what it was but I knew the symptoms. Pain and pressure worsened with coughing and bending over.

I have a neurologist and a neurosurgeon. As of the other day I will also be going to the pain clinic. My day’s have changed from playing with my boy’s to laying on the couch and wishing I could be me again. I have had two surgeries and found out my CSF flow has decreased once again. There maybe another surgery in my future or it maybe just life long switching of the medicines I take. I have found that I have a diagnosis but the struggling is just beginning. Having doctors look at me like I’m crazy or just seeking medication is an every week thing. I’m not normal anymore, instead my pain and pressure are my normal. I can’t swim or laugh without my head feeling like it’s going to explode or like my eyes are going to pop out of my head. My depression has gotten worse, my anxiety is crazy, and I can’t sleep at night like used to. Chiari has changed my life and not for the better either.

I have learned how to cope and deal with what is thrown at me. Many days are spent on the couch or in bed. Only those close to me can look at me and tell when the pain has gotten the best of me. It wears me down and I can’t sleep because of the pain and not sleeping is making the pain worse. Many days are spent feeling bad because I do have three great and wonderful boys who truly don’t understand why mommy can’t do the things she used to do. Chiari isn’t what people think. It’s a battle that’s fought everyday in my head. Some days I loose and many I cope and deal with the pain. I have come to terms that my journey with Chiari is just beginning. It’s never ending.

After my last surgery I had high hopes that I would be one of the people that where my symptoms would be eased and I could live normally again but my symptoms are getting worse. I have met some awesome people on Facebook that have Chiari. I have a great support system that understand what it’s like living in my head but they do not fully know what’s like. Unlike the people on Facebook they go through what I do. They have a better understanding and it’s great to talk to them and know I’m not alone. There are support groups, ones that allow us to vent and give us courage and support to keep fighting, and to never give up no matter how bad the pain is. I fight like a girl everyday because there is no giving up until my last breath. I want to raise awareness for Chiari Malformation because there is so many people who fight the same battle I do. The pain has made me stronger made me realize that life is too precious to let any disease win without a fight. I fight like a girl because that’s the only way I know how to do it. Chiari is my disease it is and always will be a part of my life. It doesn’t however get a say in how I live my life…. It may cause me to be down but I will always get back up and fight back!

Jennifer
Virginia
Submitted 07/29/2013

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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One comment

  1. Like you i have had two surgeries for a Chiari Malformation. and i was just wondering if you also have a srynix? just trying to find other people out there like me and see what they have been through and everything.. Its hard when all the symptoms come back ten times worse.

    Elena

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