Chiari Malformation

Chiari what??? 15 years ago I got that phone call from my doctor and I was so confused as to what he was saying. I couldn’t even pronounce it! Now it’s common lingo in my house, but for those of you that don’t know how to pronounce it, it’s key-r-e.

So what is chiari? Chiari malformation (kee-AH-ree mal-for-MAY-shun) is a condition in which brain tissue extends into your spinal canal. It occurs when part of your skull is abnormally small or misshapen, pressing on your brain and forcing it downward.

An image of what my brain was doing in my head.

Chiari malformation type I develops as the skull and brain are growing. As a result, signs and symptoms may not occur until late childhood or adulthood. The pediatric forms, Chiari malformation type II and type III, are present at birth (congenital).

I have chiari type I. Mine didn’t present until I was 30 years old. It was the scariest time of my life and I was certain I was going to die.

My symptoms started in the summer of ’05 and I went downhill very fast. I had numbness in my hands, legs and face. I couldn’t lift my children who were 4 and 2, let alone a gallon of milk. I would collapse because my legs would be so numb. In fact my husband and I had to teach our son to call 911 in case I passed out or collapsed while he was at work. I also remember my son holding my hair while I vomited in the toilet, the pain in my head was so severe. I spent lots of time in the bathroom. I was so sad for him. I should have been taking care of him, not him taking care of me. I had severe insomnia and slept less than 2 hours a night. I was on several intense drugs and would often be in a zombie state from them, but I needed them for pain.

My little care taker and I in the hospital.

I had gone to several doctors, had several MRI’S, and literally begged anyone who would listen to help me. I knew I was dying but no one could find an answer.

I finally had a complete meltdown in the office of a neurologist. I told him I was dying and that if he didn’t figure out what was wrong I would be dead within months. I sobbed and sobbed in his office. I left, answer-less. I thank the Lord every day that he continued to search my MRI’S for answers, because a week later he called and told me he finally found the problem. And then he told me I would need brain surgery!!! WHAT!!!

My husband and I began researching like crazy, as this is not a common surgery. Through the grace of God we found a doctor who had just moved to Colorado, a 5 hour drive from us, who specialized in Chiari. We drove down and met with him and set a date for surgery. I was diagnosed November 6th and had surgery February 23rd 2006.

Dr. Oró was my life saver and gave me my life back. Had I not had surgery I would have been wheel chair bound from the nerve damage. My spinal fluid was completely blocked. Dr. Oró and his team performed a 3 hour surgery, and then began the awful 3 days in intensive care. I have no memory of those 3 days, but my mom and husband were convinced I had permanent brain damage. Finally, on day 4, I came to and asked for my kids. Thank you Jesus I had made it through.

Dr. Oró, my lifesaving doctor

I still deal with residual pain and migraines, but I’m off all my drugs and the numbness is gone. I have a titanium mesh plate in my skull and no guarantee that I won’t have to have surgery again. You can’t lift a brain, so they make the base of your skull bigger ensuring that the brain isn’t compressed anymore. With a bigger hole at the base the chance of the brain slipping again is a possibility. But I have my life back for now and hallelujah for that!

Scars are proof that you are stronger than why tried to kill you!

Why am I telling you all this… because I find it necessary to tell people to fight for their health. I had to fight so hard to find answers! I can’t tell you the number of times doctors told me I was crazy, that there wasn’t anything wrong. But I knew! I knew I was dying and I needed help. Don’t give up!! Go to as many doctors as needed until you find an answer. Beg, plead, and sob if necessary. And trust your gut! The first neurosurgeon I spoke to about this surgery was such an ass! My husband and I both agreed he would never come near my brain. When we found Dr. Oró we knew we had found the answer. Keep searching until you feel comfortable, it’s your body, it’s your health! I hope I never need another chiari surgery, but I know if I do I will fight for my health again. Here’s to health and happiness! If you have any questions, please contact me! I’m always willing to encourage and help others fight for their health!

Always, Amy❤

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