Dear Friends,

    May 22, 2000 Dr. Dan Heffez operated on me for Chiari malformation, to free up the opening for the spinal cord. Since the operation, my FM symptoms have dramatically improved, life is great!  What a pathetic person; out of control with pain, wobbling down the airport ramp to board the plane to Chicago to get an operation that so many criticize.  I figured I didn't have a choice, I was weak and overtaken with pain, no pain medicine, no help.

    My nightmare started October 1984, when I came down with a strange flu that never went away.  I had severe chills, fatigue, aching all over, (mostly on the left side of my body and down the leg), and severe migraine headaches.  My symptoms would come and go for a few years until a severe storm hit me in 1995.  I became so ill that I sat up on the floor with my head on a chair night after night to sleep.  The pain was in the left side of my face and forehead, chest and left arm and shoulder.  It felt like a knife was stuck through my left eye and I wore a patch covering the eye, which helped.  My arms hurt so badly and I went for weeks gasping for air, not sleeping, enduring severe pain and headaches.  I found relief from a shot of oxytocin, but the symptoms returned.  One doctor thought I had Barri Lou Syndrome, which is a separated muscle from the bone in the chest area.  He suggested getting a  cervical chiropractic adjustment. This treatment helped; my eyesight straightened out and my headaches were gone!  I remember also that my left jaw and eye were pulling to one side.  These adjustments helped for about eight months, including straightening out the jaw and eye.  After that, I just didn't stay adjusted and I was back to severe pain.

    I have been active in a fibromyalgia support group here in Spokane, Washington since 1989.  Rae Gleason from the National Fibromyalgia Research Assn. invited me to attend their research conferences.  It was at the 1999 meeting that I heard Dr. Michael Rosner and Dr. Dan Heffez define Chiari malformation and spinal cord compression.  I spoke with Dr. Heffez and he said he would read my latest brain scan and call me if he saw something.

    After a complete neurological testing regimen at the Chicago Institute of Neurosurgery and Neuroresearch (CINN), Dr. Heffez told me I have a Chiari malformation and fifth vertebrae problem, resulting in my May 22 surgery.

    I am several months out from Chiari surgery and I will tell you, my symptoms of fatigue, headache, irritable bowel, sleep disorder, weakness in the limbs, OUT OF CONTROL PAIN, and concentration, are dramatically improved, if not totally dissipated.  I do have stiffness problems, my left eye weeps and is very weak, and I have numbness in the left part of my face, but overall I consider these symptoms to be trivial compared to before surgery. 

    I am so thankful to the National FM Research Assn and Dr. Heffez!  Research is underway to determine the role spinal cord compression plays in the large society of FM/CFS patients.  Is FM really spinal cord compression?  Time will tell.

Life is great!

*Helen is the President of the Inland Northwest Fibromyalgia Association in Spokane Washington.