April 13, 2011

Doctor, Doctor, Give me the News. I've Gotta Bad Case of ..........

Soon after my third child Caroline was born, it all got kind of fuzzy. I do remember that the next two years were spent either in bed or at doctors appointments. Pain filled my body and my entire life. One evening in 1998 I was taken to the hospital emergency room. I could not move my neck. It just came out of no where. I didn't twist it funny or hurt myself. The pain was incredibly intense. They took an X-Ray and shot me up with Demerol. Not a compatible drug. But that's another story! They sent me home and recommended I see a Neurologist. In the meantime, the neck pain and headaches persisted. I felt incredibly fatigued and all I wanted to do was sleep. I would sleep 16 hours a day. This was so difficult because I had three children who needed me. My youngest was just a baby. I saw the best infectious disease doctor in the state. She found nothing on the blood work and diagnosed me with Chronic Fatigue Syndrome. Basically she had no clue. The neurologist thought I was depressed. He took all kinds of tests to rule out MS and other neurological diseases. According to him, all were negative. One day he called to tell me that my MRI showed a couple of things, but that he considered them to be very minor and that they did not explain my symptoms. After he hung the phone up, I took a few minutes to digest what he said. I called his office back and asked the secretary to read me the results of my MRI and I wrote down every word she said. I looked at the piece of paper and although I was not a doctor, it looked like it was SOMETHING. And that is when the nurse in me took over and I began doing my own research. The Internet was pretty new to me, but I learned how to navigate it quickly. The first thing I looked up was something called an Arnold Chiari Malformation with a 9 mm herniation. I mean, that sure sounded like something to me! There was not a whole lot of information on it at the time. Most were found on autopsies or babies with Spina Bifida. However, I stumbled upon a world wide Chiari Group. Finally an answer to prayer. I read all I could and emailed people from all over the English speaking world who had the birth defect or knew someone with it. This was amazing. It explained most of my symptoms to a tee. The head and neck pain, the dizziness and nausea. The difficulty swallowing and loss of balance. And the chronic fatigue. I seemed to find my answer but I could not find a doctor to agree with it or to help me. I went from neurologist to neurologist. I even went to see the head of Neurosurgery at New England Medical in Boston. They all thought I was crazy and depressed and recommended that I see a psychiatrist. I was sent home time after time with no help and no hope. I spent nearly two additional years on the couch or in bed. I grew weaker and weaker as the months passed. I thank God for my mother and some close friends who helped me with the kids. The burden was also tough on my husband who at that time worked a gazillion hours. I prayed and prayed for help and guidance but it seemed to elude me. Until one day a friend of the family through our church called me on the phone. She told me that her daughter who had spina bifida had an excellent pediatric neurosurgeon. His name was Dr John Duncan III. This friend told me she would talk to her doctor and explain my situation and see if he would be willing to see me. He agreed! And that's when everything began to look a little bit brighter......Was there a light at the end of this long dark tunnel?


  1. I had wonderful doctor's that worked hard to find my problem and has soon as they did I was referred to a pediatric neurosurgeon. I have now had two detetherings for a tethered cord. I am recuperating from the second still as it was on March 22. I still have pain and numbness in my leg and foot and a non functioning bladder. I had 50 years of nerve damage though so who knows what will return. I also have a blog please feel free to visit and post. http://beegeelover.blogspot.com/
    I bookmarked yours and will keep a check on your progress. Patricia

  2. thanks! I'll check your blog out also. :) Hope u continue to show improvement.