Ray's story

read the book

Ray's book, "Contents Under Pressure: One Man's Triumph Over Chiari Syndrome, 2nd edition" is available at Lulu. All proceeds go to ConquerChiari for research.

Ray is a retired research and development executive in the Pharmaceutical Division of Procter & Gamble. He worked on the team that developed the blockbuster drug Actonel for osteoporosis. Surrounded by doctors and clinical researchers, Ray's health rapidly declined over a 15 month period. "Anytime I used my arms and legs, I felt sick. It was causing me to shut down."

misdiagnosed:

Ray's first symptom was sore throat pain and jet lag after a routine overseas business trip. Thinking it was strep throat, he saw an ENT doctor. Antibiotics and rest were prescribed. But the throat pain spread up his face and into his ear. The pain was there all the time. Then came weakness, numbness and tingling in his hands. He also felt depression and anxiety for which he took antidepressants and saw a psychiatrist.

Over the course of a year he saw numerous doctors. Many of them felt that Ray's symptoms were part of his clinical depression. "It was getting very difficult for any doctors to listen to my physical symptoms with any kind of seriousness."

diagnosed:

Ray worked with many doctors at P&G. An internist told him, "Ray, I think something is wrong with the base of your brain." So, Ray made an appointment with Dr. Tew at the Mayfield Clinic.

A physical exam and an MRI confirmed that Ray had a Chiari malformation. However, among the list of physical problems was not the hallmark symptom of headache. A conservative, watch-and-wait, approach was recommended to make sure the symptoms were caused by the Chiari.

Ray continued taking medications for several months, but the symptoms worsened. Ray went back to the neurosurgeon, barely able to walk. It was time for surgery.

recovered:

On Oct. 8, 1999, Ray had posterior fossa decompression surgery. Immediately, Ray's facial pain was gone. He was also able to walk. Recovery from surgery took about 7 weeks, but not all the Chiari symptoms went away. Over the next year, Ray became frustrated, "I began to question my judgement as to whether or not I should have had the surgery."

With help from a psychiatrist, Ray learned to cope during the recovery. "Time is the best ally when it comes to healing, particularly neurological damage." Slowly, Ray began to turn the corner and after a couple years he felt well again. Today, he is off all antidepressants and works tirelessly to help others with Chiari. He writes books and has a regular spot, Ray's Corner, on ConquerChiari.org.