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Lori’s Story (Chiari Malformation)

Lori's Story (Chiari Malformation)Hi my name is Lori and I have just recently realized my journey started at birth. Over the last four years I have battled daily with headaches, all over body pain, and have been bedridden day after day. During a visit the ER a CT Scan was performed marking the day I found out I had a chiari malformation. The ER doctor explained to me what it was and that I needed to seek help from a neurosurgeon. He also recommended that I not have anything done surgically. For three years I went for regular routine brain MR’Is and follow ups with my neurologist and neurosurgeon.

I later found several support groups on social media which helped me to realize the seriousness of chiari. As the headaches got worse I found a neurosurgeon who agreed to do decompression surgery to help rid me of some of the daily pain I was having. Little did anyone know this would open the door for several other illnesses and my pain/symptoms worsened!!

I refused to listen to my local doctors who continued to tell me there was no reason for me to feel worse. I was told the symptoms were not part of your illness, I have depression, I just need to heal, and I’ve had brain surgery. This led me to do more research and educate myself. It brought me to a long year of doctor appointments and labs week after week.

As I researched all that was going on in my body my mom and I were able to start tracing things back to birth with my health issues. I was born with permanent nerve damage in both ears, I was born with my legs wrapped around my upper body, I had to wear corrective shoes and do leg exercises, I had seizures along with several ear and upper respiratory infections, surgery for a baker’s cyst behind my knee, menstrual issues, wore orthopedics due to no arches, a muscle fatigue, palindrome rheumatism athirst, breast cysts, sever endometriosis, ovarian cysts, several sprains, and had a 10 year battle with pre-cancer of the cervix, uterus, and colon. It all became a bigger puzzle which still today isn’t finished.

My present diagnosis is chiari malformation, EDS 3, pituitary tumor, basilar invagination, retroflexed odontoid, syringomyelia, C-Spine instability/other issues, sleep apnea, narrowed ventricles in my brain, GI issues, and unknown genetic issues. I continue on with making lifestyle changes to help with the overall daily pain. Just this week I found out my youngest daughter’s brain MRI is a mirror image of mine plus a few other issues. Together my 13 year old and I will Fight Like A Girl!!!

Lori
Illinois
Submitted 02/27/2014

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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4 comments

  1. I am 39 years old and deal with Chiari I. I was diagnosed at 19 after having an MRI done searching for what doctors believed was a tumor pressing against my optic nerve causing me partial blindness. No tumor was found. Instead, Chiari I was discovered. At the time I didn’t understand the correlation between the two. I never had a follow up with a doctor nor were the results of my MRI explained to me. I tried to live as normal a life as humanly possible. I worked, never got a license, got married and started a family. Finally, around the age of 30 I decided to try and get my daytime only drivers license. I was there told by my eye doctor that I had Optic Atrophy. I was able to keep my daytime drivers license for 8 years though I probably shouldn’t have even had it. Due to my condition which I believe came about from Chiari I, I am now on disability. With all this time on my hands I started researching Arnold Chiari I and discovered just how many of these symptoms apply to me. I have central sleep apnea and have never had a good nights sleep my entire life. I have immense headaches and pressure resonating from the back of my head. Ringing in my ears coupled with numbness through my body. An extremely hard time swallowing causes me to gag when drinking and makes it difficult to eat. I nod off constantly and have flat feet that bring me intense discomfort. I used to believe my problems were ordinary and was raised by father to toughen it out. I almost want to cry when I read these forums and see the similarities in difficulties we all face because of this congenital deformity. I have recently scheduled an appt with my doctor to start dealing with these worsening conditions. I wish everyone well and good luck.

    • Have you been diagnosed with Ehlers-Danlos Syndrome?

    • Isaac – I wish you the best of luck!! Please let me know if I can help you do any research or look me up in some of the Chiari groups and tag me. I’m a huge advocate when it comes to trying to help others find the help they need

  2. Yes, just this past year. I’m currently waiting on insurance to approve genetic testing. I’ve had 3 more surgeries since I wrote this and finished up all my bladder treatments. My youngest is still symptomatic but we are holding off on the next MRI as long as we can. We are now dealing with possible POTS and PANS with my oldest daughter. It wasn’t until I was treated for POTS and did some more research that I started putting her puzzle together. My life is on hold and just trying to get by and working more on paving the way for my girls.

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