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!!!
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.