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Marcella’s Story (Chiari Malformation)

Marcella's Story (Chiari) In 1996, I was in a car crash, I walked away with whiplash, or so I thought. After a year, my symptoms were still there. I went to see my general practitioner. He said these can go on for a long time. When the symptoms got worse, I asked to see someone private through my husband’s work. I had a scan done. The doc I saw said he would send me to a neurologist. WOW, what came next was a BIG shock, to say the least! The feelings of pins and needles in my hands, legs, strange headaches, double vision, and loads of other stuff when I was a kid would be explained. The doc said he knew straight away when he was sent the scans. What he showed me and my husband, was a pic of my BRAIN SLIPPING INTO MY SPINE. It is called chiari malformation. It felt like my world had just fallen apart. He did some more tests and discussed what he was going to do.

My husband asked how urgent action would need to be taken. The doc replied it should have been done when I was younger. But as it stands now, I said I couldn’t. I had things to do and a family to look after. I asked if there was any way to postpone it. He said to go home, talk to the family, and come back in 2 days. Before I was to go back in, I became paralyzed again, and my daughter saw this and it frightened her. Because this happened, I had treatment done. I had decompression and my cerebellar tonsils removed. I was in the ICU for 2 days. My doc said that if  I had had another bout of going paralyzed, that would have been the last one. I would have been paralyzed from the neck down.

It is now 2012. My girls are grown up and I have a grandson. But now, I’m having really bad back problems and similar symptoms as before i had a scan. So I had another full body scan. “Here we go again” I said to my husband joking. I went for my results to find out that I now have 2 cysts in my spinal cord, a symptom of Chiari. At the moment, I am being observed because of the dangers. I now use crutches because I also have degenerative disc disease in my neck and my lumber region. God, all I need is the added extras like a hole in the head, LOL. I forgot I DO HAVE A HOLE IN MY HEAD.

Well, that’s my story. I keep going by thinking there are some people worse off than me. That and my sense of humor keeps ME GOING. Thanks for your time. (This week we have just celebrated our 30th wedding anniversary).

United Kingdom
Submitted 4-21-2012

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. Jennifer W

    I knew that I had a Chiari for over 15 years, but my syncope and other symptoms were apparently all in my head (or falling out of it, as it were). I finally had a decompression when I started to fall almost daily and have escalating syncopal episodes several times a day. I suspect that my severe peripheral neuropathy could have been prevented if I’d had intervention earlier, prior to my syrinx developing. Thank you for sharing your story.

  2. Aimee fuller

    Wow that is so like me! I had a car crash in 2001 and was told I had whiplash. After years of going back and complaining of pain and headaches I had a MRI. Even tho the chiari was seen the doctor decided that it wasnt where my pain was coming from. It was never mentioned to me. A few years later after living with pain and giving up on doctors I became pregnant. When seeing the pediatrician he looked at my med record and told me about the chiari malformation and how giving birth could have complications. I gave birth via c-section under a general. That was 8 years after my car crash. 6 mths after my daughter was born I saw a neurologist. 2 weeks later I was having surgery. I have since had back problems and I am waiting to have a spinal op nxt mth. late last year I found out that I also have BRCA2 gene. This is why I like this site as it is for more than just one thing.

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