Surgery For Arnold Chiari Malformation and Trigeminal Neuralgia

41 years old, presented with disabling headache. She had been told for years it was migraine headaches. She was evaluated and found to have pressure in the back of her brain, a condition called Arnold Chiari Malformation. She was taken to surgery in 1997 for the pressure, which was removed, and her brain had more room in the skull. Thirteen years later she is still doing well functioning well.

Janet V. had been suffering from severe back and neck pain and headaches for many years. Her primary care physician prescribed physical therapy for the neck and ordered an MRI. “I had been suffering for probably 25 years,” she said. “I went to the Mayo and Carl clinics and all the migraine medications did not work. I finally saw Dr. Ghaly, who took a thorough history and looked at the MRI, and I’ll never forget how he said ‘I think you’re suffering from a condition called Arnold Chiari malformation.’ In essence, he said my brain was being squeezed because of a malformation of the bones in my skull. He said we’d monitor the condition over time, and send the films to a doctor in New York who was an expert on Chiari malformation.”

Janet had another MRI a few months later, the malformation was diagnosed, and Dr. Ghaly suggested surgery to correct the malformation.

“It worked so well it was like I had a new lease on life,” Janet says. “I had done everything to relieve the pain-from massage to tai chi to yoga-but nothing worked. Some of my husband’s and my friends actually thought we were having marital problems because I always seemed out of sorts. It was because I was always in such pain!”

Janet says Dr. Ghaly was the first doctor she saw who actually listened to her when she described her pain. Other doctors had suggested she see a psychiatrist.

“Dr. Ghaly listened, and didn’t jump to conclusions,” she says. “I never had a doctor who listened and believed what I was telling them. In fact, I had actually gotten to where I avoided doctors because I knew in advance what they would say. This surgery has changed my life!”

Janet says she had great confidence in Dr. Ghaly once he told her there was actually a diagnosis. “He was very calming, and told me he could correct this condition which had so affected my life,” she said.

The surgery was successful, and after about four weeks of recovery, Janet returned to work. “I remember leaving the hospital, and other than my neck being a little stiff, there was no longer any pain,” she said. “I felt so different, right from the time I came out of the anesthesia in the recovery room,” Janet says. “I remember thinking I had a clear mind again because I was finally free of all that pain.”

A few years later Janet saw Dr. Ghaly once more because she was experiencing increased headaches. “I was afraid the pain was coming back, but it turned out to be just stress headaches,” she says. “Today I live a normal life. I even started riding horses, but I assured Dr. Ghaly that I would always wear my helmet!”

Janet has some advice for anyone faced with a similar medical problem. “Listen to your body,” she says. “You’ll know there’s something wrong. Find a doctor who is willing to listen to you, and will pursue it. Understand your own health.”

Janet says charting your symptoms can be useful. “That can help when you talk with a doctor,” she said. “But above all, find the right doctor. I don’t know another doctor like Dr. Ghaly, but look until you find one!”

Janet said having surgery was frightening at first. “I tell people to not be afraid of the surgery, it has been a life changer for me,” she said. “I had a condition that is often misdiagnosed. It’s really like your brain is wearing shoes that are too tight. Once the pressure is relieved, you have relief form the pain.”