My Chiari Story

Looking back, my first Chiari symptoms began when I was 23, and pregnant with my son. Every day I would experience severe, debilitating headaches. My obstetrician sent me to see a neurologist, who performed many tests, and sent me for a CT scan. All tests were negative, and after I had my son, the headaches disappeared. In 1992, I starting having strange tingling feelings in my right hand and arm, and it eventually spread to my face and head. There was also some patchy numbness. Soon after, my right leg began to feel weak. My doctor referred me to a neurologist, who performed a number of tests. He suspected I had MS, and ordered an MRI. I was told that the tests were all fine. Many years later I would learn that the MRI actually did show Chiari Malformation, but the radiologist missed it.
The symptoms began to subside somewhat, and in 1994 I graduated from a technical training school with a 4.0 average. I was now a Certified Medical Assistant/Phlebotomist/IV Tech. However, late in 1995, the symptoms resurfaced, so once again I was searching for answers. I began experiencing dizzy spells, nausea, and insomnia, along with the same symptoms I had before. I also felt this intense fatigue that I just could not shake. My doctor felt that it could possibly be an inner ear problem, so he sent me for an ENG (electronystagmogram), but I was told that those tests were all normal. Once again, I would later find out that the report actually stated that "an inner lesion cannot be ruled out."
I had been living with these symptoms for so long, that by this time I was learning to deal with them. I started a new full-time job in 1997, which proved to be a real test. My legs began to feel very heavy and weak, the back of my head always ached, I always felt like I was about to get the flu, and I had this bone-tired fatigue that no amount of sleep would resolve. I struggled on like this for almost a year, until I could barely function. I decided to go see a neurologist affiliated with Johns Hopkins. She started asking me if I was having trouble paying my mortgage. I knew immediately where this was going...she was suggesting that my symptoms were caused by stress, anxiety, or depression. She concluded after the exam that there was nothing "physically" wrong with me.
By August of 1998, I ended up in the hospital. I had awakened one morning barely able to stand. My legs didn't want to hold me up any longer. I was so very tired, I was afraid to fall asleep, because I felt I had to remind myself to breathe. I had yet another MRI (I lost count by this time of how many MRIs I had), a CT scan, an EEG, another spinal tap, and bloodwork done, all of which were reported as normal. The hospital neurologist examined me, asking me to lift my legs as he held them down. I couldn't do it, and he accused me of faking it. He discharged me a few days later. Again, many years later I obtained the MRI films, which did in fact show Chiari Malformation. By this time I had been misdiagnosed with possible MS, Chronic Fatigue Syndrome, possible Fibromyalgia, possible neurally mediated hypotension, basilar migraines, depression, anxiety, peripheral neuropathy, and inner ear problems. But deep in my heart, I knew there was just one condition causing all these problems.
Again, I went back to my doctor, who ordered a tilt table test to check for neurally mediated hypotension, since my blood pressure always ran so low. This test was grueling, and a waste of time. My very own doctor began to question me about depression. He even took my husband out of the room to ask him what was going on at home. My husband insisted that this was something physical, not emotional.
By late 1998, my health was sliding downhill quickly. I was losing time from work, and my boss was not happy with me. Eventually I had to take sick leave under the Family Medical Leave Act, for which I did not get paid. I wrote quite a long letter to my doctor, asking him for yet another MRI. I assured him that my symptoms were not "all in my head." He agreed to another MRI, which would finally be my salvation. The radiologist spotted the Chiari Malformation, a 3 millimeter herniation. When my doctor called me and told me, I could kind of hear the relief in his voice. It may sound crazy, but I was elated to finally have a name for this monster that had been haunting me for so many years. He referred me to an excellent neurosurgeon at Johns Hopkins Hospital, Dr. Jon Weingart.
Dr. Weingart did a full examination, and he showed me on the MRI films where the herniation was. After hearing my symptoms, he suggested that I was a candidate for decompression surgery. So on December 18, 1998, I had a "sub-occipital craniectomy with C-1 laminectomy, and a bovine duraplasty." Yes I have a piece of a cow's heart in my brain - please no moo jokes!
The surgery was rough, to say the least. The first 24 hours in the ICU were extremely painful. It took me about two months to recover from surgery, but I didn't start to notice a change in my Chiari symptoms until a few months after that. My legs began to feel stronger, I wasn't exhausted anymore, and most of the other strange symptoms disappeared. I felt more alive than I had in many years.
Today it is over 10 years since my surgery. I can't say I am 100% cured, because there is no total cure for Chiari. But my symptoms remain minimal, and my life is just about as normal as it can be. I can do just about anything that I could do before my symptoms appeared, with the exception of a few things (rollercoasters, horseback riding, and anything that would jar my head and neck). On most days, I forget that I have Chiari until I feel the scar on the back of my head and neck.
So many times I asked myself why I was given this heavy cross to bear. Not only did I have Chiari, but I had to live through many years of symptoms, not knowing what it was that was making me so sick. Doctors raising an eyebrow, giving me that "look" that told me he or she didn't know what was wrong with me, and was about to prescribe antidepressants. I often wonder if it was in God's plan to make me wait until the "perfect" neurosurgeon came along. My surgery went well, and I had absolutely no complications, so Dr. Weingart was definitely worth the wait. And after doing alot of research on the internet about Chiari, I realized that there were so many other people in the same predicament as I was. I knew I had to do something. I had to help these people, I had to tell them NOT to give up. I think just letting people know that they are not alone in this helps a great deal. I didn't want anyone else to have to go through many years of pain and uncertainty. Then I realized that I could reach out through the internet, via support groups, message boards, and email. Through helping others, I have accepted my condition, and come to terms with the many years of searching for answers.