I just wanted to share some of my experiences with Chiari I and how I found relief.
I always had a feeling that something wasn't right about how I felt. I remember having occasional headaches when I was five or six and having to take chewable tylenol for it. When I was nine, I was kicked in the neck while playing football, and ever since I have dealt with neck pain, soreness, and stiffness. I saw a chiropractor for it for a month or two before I couldn't stand the sound of my bones cracking and stopped going. By the time I was ten, I had headaches usually once a week. I remember my Dad thinking I had his migraines because if I didn't take medicine for them quickly, they got worse and worse until I would vomit. I remember thinking I had problems with my vision because focusing often hurt. In high school I had to give up playing sports because physical activity made my head hurt. When I was 20, I started going through spurts of headaches where I would have a headache almost every day for two to three weeks, but then they woud go away for a while until another spurt started up again. Right around this time I went away to school and started living on my own after two years at community college. As I took more difficult courses, my stress levels increased and with it my headaches became worse. Instead of having spurts, I had headaches 2-3 times a week. In January 2012 I started nursing school believing I had found my calling in the medical field. This was around the time my headaches became an almost everyday occurrence. I remember having a headache on my birthday that year, and thinking to myself, "something is wrong here." As the months went on, I started to notice other strange things. For years I had never been able to sleep with the back of head lying on a pillow. I had to lie on my side or tilt my head while lying flat so the back of my head wasn't having any pressure applied to it. I couldn't wear hats or sunglasses, because even the lightest amount of pressure was enough to cause a headache. As the summer went on and my headaches became worse, I finally realized that something was wrong with this whole picture, and I needed to see someone about it. However, I had to wait until school began again in August because the only insurance I had was through my university. At the beginning of September I went to my school clinic and was referred to a local neurologist. While I waited for my appointment, I began seeing a chiropractor again at the suggestion of the doctor in the university clinic.
The neurologist I saw suggested that my headaches were simply a result of my inability to manage stress in my life, but did an MRI to rule out anything serious. In the meantime, he started me on xanax, which only succeeded at making me more tired (not good when you have full days of class two days a week and clinical twice a week, plus homework). I had the MRI and when I got to my follow-up appointment, the nurse told me my MRI was normal. However, when the neurologist came to see me he told me that my MRI had showed an incidental finding (the Chiari). However, he assured me that the Chiari was a common finding, and there was no way it was causing my symptoms. He upped my dose of xanax and had me out the door in less than 15 minutes. I was disappointed, I felt as if I was never going to get an answer to my problems.
Being a nurse (or I suppose nurse in training), one of the things we are taught is to be an advocate for your patients. With our education, we are not only the best person for that job but often the only one. So, I began doing my research on Chiari and found that a lot of my symptoms matched up with what Chiari patients often experience. I waged this internal war, going back and forth between this doctor is a whacko and this doctor knows what he's talking about. It took a number of months before I finally decided to seek a second opinion about my diagnosis (or lack thereof). I decided to wait until after the holidays to seek this second opinion. I did a lot of research about doctors who specialize in Chiari. I didn't want to go too far because I was going to have to see this doctor while going to school (I attend Illinois State University in Normal, IL, about two hours south of Chicago). I finally settled on Dr. Frim at the University of Chicago Medical Center and faxed in my paperwork. When I received a call back, they informed me that Dr. Frim was focusing on Pediatric patients, but that they had made me an appointment with a Dr. Issam Awad. Never having seen his name before in my research, I was concerned. I did some further research and it seemed he had some experience with Chiari.
I went to my first appointment with Dr. Awad and was immediately set at ease. He was very friendly and talkative, something I found shocking in a surgeon, especially a neurosurgeon. After doing a neuro exam he found my left arm had decreased strength and was hyperreflexive. He also discovered I had nystagmus in my eyes. He believed these could be contributed to the Chiari putting pressure on the spinal cord, but wanted to do another MRI to confirm there was nothing else wrong. Although the MRI determined I have degeneration in my neck, it wasn't the cause of my symptoms. Dr. Awad scheduled my surgery for March 21st.
As I was having to cope with the impending surgery, the rest of my world came crashing down around me. As I was in school (3rd of 4 semester of nursing school), I initially had planned to remain in school for the semester and have the surgery in May, hoping I would be ready by the time school resumed in August. One thing I did not anticipate was that Dr. Awad would place me on a lifting restriction. I was limited to no more than ten pounds. When my school found out, they told me that for safety reasons I would no longer be allowed to participate in clinical and I would have to withdraw from school. I felt as if everything had been ripped away from me in short order. My health, my school, my friends. But, as they say, what doesn't kill you certainly makes you stronger. This is true in so many ways for me.
I had my surgery three weeks and three days ago. I don't think I had ever been more scared in my entire life. Because they were concerned about my neck and also because I have a history of acid reflux, I had to have the breathing tube put in while I was still awake. Of course, I don't remember that because I was sedated, but I do remember having lidocaine sprayed down the back of my throat and it was awful. I remember waking up and the pain being so horrible, unlike nothing I had ever experienced. I was disappointed that I had a brain dead nurse who gave my Vicodin instead of the IV pain killers when I woke up (and was shocked that they didn't help, go figure!). She ended up having to give me Dilaudid less than two hours later, and thankfully she was never my nurse again after a few hours. I spent three days in ICU, the first two in awful pain. I was barely able to eat because of the nausea and the medication they gave me wouldn't help at all. By day three, I was up and walking around with the pain not being so bad, and by day four I was able to go home. The next day I was out and about with my Mom and girlfriend and felt pretty good. Within a week, almost all of my surgical pain was gone and I only had to take the Vicodin to sleep.
Even though I was in the hospital and in so much pain from the surgery, I came to this realization almost right away. Something was... different. It was then I realized that for years and years and years I was living with this intense pressure in my head. It was the pressure, caused by the Chiari, that had been causing my headaches all these years. I was finally able to pinpoint it because for the first time that I could ever remember, this pressure in my head was GONE. And since I woke up in the ICU after brain surgery, I have not had a headache since. I still have a very long way to go, but I hope that my condition will continue to improve as I heal.
I wrote this today for two reasons. Number one, I hoped that what has happened to me will inspire others to advocate for themselves and get the treatment they KNOW they deserve. If I had not done this for myself, I'm not sure where I would be. I was at a breaking point. Number two, I hope this will bring some more recognition to the work Dr. Awad does, and if even just one of you chooses to see Dr. Awad about your Chiari, I will have succeeded. He's changed my life, and I hope he will change yours.
Thanks for reading, and if you have questions feel free to respond or message me on here. I don't go back to school until August so I have plenty of time! I also have attached a picture of me post-op, as I proudly join the league of Chiari zipperheads!
Josh M
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