About Me

I began having seizures when I was just a baby. After numerous trips to the pediatricians with my parents, it was thought that my seizures were febrile, and that I would just grow out of them. At approximately age 5, my seizures stopped and our family was thrilled! Maybe this was something that I was fortunate enough to have grown out of for good!

Unfortunately, at around age 12, the seizures came back with a vengeance. I was having many different types of seizures, mostly grand mal. I would sometimes have multiple seizures in a day. I had numerous EEG's as well as many other types of tests. At that point, we had been in and out of emergency rooms more often than you can imagine and we never got a concrete answer. Doctor's were convinced that I had epilepsy. At that time, I think that my parents and I felt a sense of relief since we now thought we had a diagnosis.

As I grew, I noticed more symptoms starting to emerge. The newest and most troublesome symptom was headaches. These headaches usually started in the base of my skull and would gradually work their way towards the top of my head, near my eyes. At first, I would just take an over the counter pain medication and deal with it. I mean, in all reality, everyone gets headaches, right??!! By the time I was 16 years old, these "sporadic" headaches became constant. I would wake up in the morning with a headache and go to bed at night with a headache. The pain also radiated down my back and in between my shoulder blades. I was always uncomfortable. When I brought this to my doctor's attention, I had heard everything from "your just stressed" to "well, you probably suffer from migraines. Let's try medication".

The neurologists had tried me on at least ten different medications. Nothing seemed to work. The side affects were horrible. Some caused extreme weight gain, others caused hallucinations and so on an so forth. In the mean time, the awful mixture of medications and headaches took its toll on my school work. I felt "numb". I had an extremely difficult time focusing and I would often forget about assignments that I had been given. I went from being an honor roll student to barely making my way through high school. I had so many dreams that I felt were unobtainable. I became extremely depressed and disappointed with myself and my doctors.

In 2008, after a lot of help, I graduated high school. At this point, I was on a medication that made me gain a significant amount of weight. By the time I walked the stage, I was at my heaviest. This only added to the depression that I was already experiencing.

I went to my local community college to study nursing. I was still having severe cognitive issues. Not only was I experiencing chronic pain, lack of sleep and depression, but I was having a very difficult time thinking, remembering important dates and processing information. I was seeing tutors and participating in study sessions, but my GPA was still slipping. I felt hopeless at this point. I didn't know if I would ever become anything.

During this time, I tried to steer clear or relationships. Having to explain my condition  to others was difficult enough, let alone a boyfriend. In 2010, I took a chance and let someone in to my life.

Within just one month of dating, I had a seizure behind the wheel of my vehicle. I had my license taken away from me. But, instead of him giving up on me, he took on the challenge to help me in any way he could. The doctors would soon change my medication, and that would be the last seizure I had (to date).

During the time without my license, I challenged myself in many ways. I enrolled in classes and vowed to get healthy. I knew that I had many neurological problems, and to be honest, at this point I still was not even sure what exactly was wrong with me, but I figured that if treated my body correctly through diet and exercise, then maybe, my body would be a bit nicer to me. I was still having daily headaches, but I was feeling better than ever.

When I was 22, my symptoms again began to get worse. My headaches became almost unbearable. I was also starting to feel strange "sensations" in the left side of my body. Most of my headaches were now also accompanied with excruciating left eye pain. I went back to the emergency room, and the doctor's believed I was have a rare type of headache called "cluster headaches". However, when I went back to my neurologist, he believed that my headaches were caused by stress and hormones. He did not feel that I had anything significantly wrong with me. He wrote me a prescription for an oxygen tank, which was meant to tame the headaches, and he sent me home.

Finally, after experiencing more new symptoms, including left sided numbness and weakness, dizziness, fatigue and ringing in my ears, I ended up in the emergency room once again. After numerous tests, including MRI's and MRA's, the doctors spotted the Chiari Malformation. Like most people, I had never heard of this condition. The emergency room doctors suggested I get in to see a neurosurgeon. I was 23 at this time. I met with the neurosurgeon approximately one week later. He looked at my scan and immediately suggested surgery. He also felt that many of my neurological disorders, such as the seizures and headaches were all related to this disease. I was getting married in just a few short months, so at that time, I opted to live with the condition and not do the surgery.

The next year, I began to realize that my symptoms were again progressing. My headaches were getting worse, I had virtually no feeling in my left extremities and I was having difficulty swallowing food. The thought of having brain surgery terrified me. I got FOUR opinions before I finally decided that surgery was the right option. On September 2nd, 2015 at the age of 25 My husband, parents, in -laws and myself made our way to Crouse hospital at 6:30am for an 8:30am surgery.

Though I am only a few weeks post op, I am so glad I made the decision to have this procedure. I woke up from surgery in tears. Not because of the pain, but because for the first time in 9 years I had absolutely NO headache. I continue to take two walks per day (apx. 1 mile all together) and I actively participate in physical therapy. My goal for next year is to run the Tough Mudder in the name of all the Chiari Warrior's out there!!