Hello! I was so elated when I discovered the AVM Support page. I am a survivor of an AVM in the C5-C6 region of my spinal cord. I have tried numerous sources to gather information, and either there is not a lot known or recorded, or I have been looking in the wrong spots!
Regardless, let me share a little of my experience. I am currently a 39 year old female residing in Viera, Florida. I was working as a school teacher in November, 1995 when I developed a sudden pain in my chest, accompanied by a quick "spurt" of a headache. Because I was doing a bulletin board and stretching at the time, I simply thought I had strained myself by reaching too high. In the next hour, the pain in my chest was more intense and each time I would move an arm slightly I would experience sharp pain. I was taken to the clinic at school and an ambulance was summoned. The paramedics listened to my symptoms and transported me to the hospital, thinking there may be a heart problem. At the hospital an electrocardiogram was done, CT scan and other simple procedures followed. The diagnosis, after several hours, was a pulled muscle in my chest and I was sent home. The ER doctor told me to call my primary care physician in the morning to make a follow-up appt.
I did just that, saw him the next day and was prescribed a muscle relaxant. Needless to say, this did not help at all. Over the next several days my condition worsened. The pain became more intense and I was experiencing blurred vision. After about a week, it was extremely painful for me to walk (each time my feet hit the ground a rippling pain would go up my spine and into my head). Perhaps the most frightening of all symptoms was when I awoke one morning (approximately. 8 days after the initial episode) and could not move my neck at all. I was able to turn from left to right, but I could not even think of nodding up and down. My neck simply would not move! I called my doctor, who proceeded to tell me I was having a "panic attack and needed to relax." WOW!
Within a few hours of this call I began vomiting uncontrollably and was taken by my husband to the Cape Canaveral Hospital ER again. This time a doctor was able to realize that something horrible was happening to me. I was admitted and a neurologist was called in. He did not seem to think that my symptoms were anything to be alarmed about, I was "dehydrated" and should go home once I was hydrated again. My parents and husband would not stand for this diagnosis and requested that another neurologist come in. This is when Dr. Wasim Niazi entered the picture. He immediately ordered a spinal tap (lumbar puncture), even though it was midnight by now. His suspicions were confirmed when he discovered blood in my spinal fluid.
This started me off on a weeklong series of tests to determine where the "bleed" had occurred. First an angiogram determined it was not in the brain, then a series of six hours of MRI's determined the general location of the bleed. Dr. Niazi, realizing Cape Canaveral Hospital did not have the facilities and/or staff to handle this, referred me to Dr. Sydney Peerless at Mercy Hospital in Miami for the next step in my treatment. I had to wait a couple of weeks to see him as he was out of the country at the time! Upon his return, he ordered a spinal angiogram and was able to pinpoint the exact location of the AVM. My only option was surgical removal of the AVM.
I was operated on December 10, 1995, through the front of my throat and in to the area of the bleed. They say the surgery was about 7 hours. Dr. Peerless was able to remove the malformation and sent me home in a week to begin my 4 month road to recovery. It was an incredible journey and I am so grateful to both Dr. Niazi, who had the expertise to diagnose the problem, and to Dr. Peerless, who had the skill (not to mention the bedside manner) to save my life. If anybody else has had an AVM near the spinal cord I would love to hear your story. From what I hear, they are extremely rare.
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