Battle of my Brain on my Body

Hi, I’m Nicole. A 48 year old wife and mother. I was “sicky Nicky” all my life. It was kind of a joke, until reality hit in 2008. I was diagnosed with Chiari Malformation. I was told it was an incidental finding and no big deal. Years passed and I got sicker. The symptoms I experienced were all over. My whole body was affected. Brain surgery became a necessity to “lift” my brain, which was stuck in the spinal cord. I had surgery in 2010. The neurosurgeon said to live life I was cured. Accepted my dream job as a special education teacher, just 3 weeks after brain surgery. I had a good few years, with some ups and downs. Life shattered again. My leaky nose that I thought was sinus trouble turned into an ENT telling me he wouldn’t touch me because of Chiari. He feared I had a spinal leak. He also informed me that there was no cure for Chiari, when I told him I had brain surgery for it. That’s when I began research, revisited the neurosurgeon and was told I was fine. I went for several other opinions in my area and was told I was fine. Facebook was my life saver. I found groups and all these people were experiencing all the crazy symptoms I was. I sought out a world renowned neurosurgeon, who only takes patients that meet his criteria. I have to travel to see him. I met the criteria and it was days after my information was sent to him that I had an appointment. My mri images were displayed and he showed that my brain stem was compressed. I needed a fusion from the skull to c2. That was in 2015. I also have ehlers-danlos syndrome, so my connective tissue is like an over stretched rubber band. My joints are very loose and don’t do a good job supporting my body. Therefore, I developed a tethered spinal cord that needed to be released in 2016. Life has never been the same. I feared my fusion was failing and found that I had eagles syndrome. My styloids looked like I was a crazy animal with tusks. Those had to be removed quickly. The right one was pinching my jugular vein and carotid artery. That was 2017. Head pressure was intense and I needed to have a bolt put in the head to check inter cranial pressure. It was then revealed that my tonsils of the brain were herniated and another brain surgery was needed in 2018. I was stable for awhile from the head issues. My body decided to throw in an adrenal tumor and a vascular surgery for a condition called MALS (median arcuate ligament syndrome) I couldn’t each much and felt like I had a size 12 boot in my stomach. I lost 30 pounds fast. That surgery in 2020 fixed that. That was done by another renowned surgeon in CT. The severity of the surgery required me to stay in CT for 3 weeks. Pain is constant for me. Some of it scares me and some of it I know why it’s happening. The legs began to give out and my tailbone, which always stuck out and was crooked, became a big problem. I couldn’t sit properly. Imaging showed my spinal cord was retethered and my tailbone was dislocated. It was bent the opposite way. I had it cut off in November 2022 along with fixing the spinal cord. Out of everything I’ve experienced, this was the worst recovery. I then ripped the tailbone incision and it became infected. An email with pictures to my neurosurgeon came back with a quick response that I needed to get on a plane that night or the next morning. I did and thought I’d just get some antibiotics. Nope. Surgery to flush out the incision, remove fluid collection and redo the incision. Cultures revealed infection, which isn’t uncommon due to the location of the wound. Came home a week later with a PICC line in my arm and had to administer antibiotics at home for 3 weeks. I am now dealing with cervical issues that my doctor wanted to hold off on, for as long as possible. He wanted to avoid the domino affect in my neck, in other words further crumbling. It is now time to address it. I went back to Long Island in October for another bolt in the brain and for invasive cervical traction, so he can see what levels need attention. My brain pressure is extremely low and it was found that I have micro spinal leaks, along my whole spine. The plan for my neck, brain pressure and leaks were addressed on December 11th. That appointment revealed that I have close to 50 spinal leaks, from the top of my spinal cord to the bottom. I will have to have a surgery on January 24th, in which the neurosurgeon will place a “corset” as he referred to it as, around the spinal cord. I will then recover and have to return for a bolt in the brain to ensure my brain pressure is normal. It will then be discussed when my body will be ready for a full fusion, extending into the thoracic spine.

My husband always said we’d get through it. I made it out of every surgery. All of this has been extremely hard for many years. Not only physically, mentally and emotionally, but financially. I have to travel, stay in hotels, and the hospital bills are shocking. I am grateful that I was able to raise my girls. I am finding I’m functioning less and less. People ask how do you afford this? I don’t. I can’t. But I need to get pieces of my life back. I will never be cured. I truly appreciate you if you made it this far in reading my story. I never wanted to be a charity case.