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Christina’s Story (Chiari Malformation)

Christina's Story Chiari MalformationEverything started when I was 15. I started passing out all the time. I went to numerous doctors, and they all said it was just headaches. When I was 19, I was told it was migraines. My headaches at times were unbearable.

While I was pregnant with my second child, I started having chest pains at work, and my husband took me to the ER. After a month with a heart monitor, I found out I had SVT and an arrhythmia. When my son was just a few months old, I went in for an ablation surgery. I ended up on meds, and a lot started to change. I was told I also had PCOS and would have to go on hormone therapy if I wanted any more children.

We were pregnant, and I was on bed rest by 3 months along, and my heart issues kept me there. I had another surgery when my daughter was 2 months old. All was good with my heart for about a year. I was so blessed that I was “fixed,” until I started having chest pains, dizziness, and a hard time breathing, and I went for a check-up at the doctor’s. I ended up with a monitor on for 2 months. I had to call my husband home from work to take me to the ER one evening to find out my heart on meds was over 220bpm and wouldn’t come down. They told me after 3 specialists that I needed another surgery, and if they couldn’t fix things, I would come out with a pacemaker. I had the surgery, but no fix and no pacemaker. The doctor said he wanted to try other options before he put in a pacemaker. He felt I was just too young.

After 9 different medicines, we found one that somewhat helps but doesn’t stop episodes of my fast heart rate at times, and they diagnosed me with inappropriate sinus tachycardia as well as SVT. I started getting very exhausted and tired all the time, which wasn’t good with a 1 year old, 3 year old, and 6 year old. I was sore all the time and started having weird pains everywhere and anywhere. I went to the doctor and was diagnosed with chronic fatigue syndrome and fibromyalgia. I went to several specialists and started to feel like I was crazy or loosing my mind. Who has all these weird pains? Pins and needles in my feet, legs, face and hands. Jolts of pain up my spine into the back of my head. My legs would get so weak I could barley walk, and I refused for a long time to use anything to help, almost as though that would be giving in. I would walk while grabbing onto the next object I could reach for. I was not keeping my balance well, even on good days. I was falling into walls, tripping over my feet and spraining my ankles regularly.

I went to a clinic 5 hours from my house. My sister would watch my kids, and me and my husband would go about once a month. I went through a large amount of painful tests to find out I had small nerve fiber and autonomic disease and that it was too far progressed to do anything about, that my nerves will continue to die, and I eventually will not feel anything, but before that that I will be sensitive to everything. Wearing socks on certain days now is intolerable and feels like walking on glass shards.

This wasn’t easy to accept, but my family were very supportive. I always believed every day was a blessing and try not to think of it all and just enjoy what I can feel and do now. After transferring to a closer neurologist, my headaches would stop me in my tracks. If I bent over, coughed, or sneezed, I would get this very defined, excruciating headache. So, they ran an MRI and found I have a chiari malformation, where my brain is herniated out of the back of my skull into my spinal column. The neurologist felt he didn’t want to try surgery, and I have yet to see a chiari specialist, but will soon.

My memory isn’t what it used to be. I forget things all the time. I stutter over my words a lot, and I can’t ever seem to find the word I am looking for. I know how people look at me at times, and that’s fine. It’s not easy, but I am strong enough to deal with this. I started, this last year, having a hard time swallowing. At times, I can’t at all. It doesn’t happen too often, but at least once a week I choke on food. I get spasms in my muscles so bad I have to massage them because the minute I relax, the pain comes back.

At least I now know I am not crazy. There is a reason for all the crazy pains and feeling, or not feeling. I didn’t used to talk about any of it, but my sister pushed me to talk on forums. Strangers completely understand what I feel, and she was right. In those times when it becomes overwhelming,  it does help to talk to other people who live a very similar daily battle. My sister has stood by me every step of the way, and I am so grateful and lucky to have her! My husband is beyond amazing. I will never be able to thank him enough for all he does. He gives me hope and strength every day! The kids help me out and understand. I do as much with them as possible. It is hard sometimes when they ask things like, “Mommy, why are you so tired?” But they are kids, and questions will be asked, lol.

I may have had to do a lot of adjusting in my life, but I won’t give up. I have a hard time getting out of bed, but when I do, I just pray today will be a good day, and I couldn’t ask for any more. I am blessed to be able to get up, to do what I can, and I will continue to thank God for what he has given me!!!

Christina
West Virginia
Submitted 11/14/2014

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. Bonjour Christina !

    Your sister and husband seems to be very thoughtful and loving people in your life and of your children’s , being such caring and devoted people will bring them joy in their own lives ! Christina , first a “THANK YOU “, for not shutting out from society and talking in public , whether it is to aquire much needed information for yourself , but also you help out others, by being ” their hope” !
    Please keep fighting like a girl ! Speeches, conference , or even a simple thoughtful conversation between two friends with a delicious cup of tea …
    … ♡♥ KEEP TALKING, KEEP FIGHTING ! ♡♥

    with prayers , love from Québec, Canada
    Brigitte Estelle xxxx

    a note to your children if I may ;
    ☆★♡♥ thank you for helping your mommy and loving her so much and keeping her days with filled with joy, happiness , and special hugs and of course your prayers!★☆♥♡

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