Through the efforts of Rep. Tom Reynolds and Ledyard resident, Lisa Disallo, Gov. M. Jodi Rell recently declared August 2008 Arnold-Chiari Awareness Month.
Arnold-Chiari was first diagnosed by Austrian pathologist Hans Chiari and researched by his colleague, Dr. Julius Arnold, in the late 1800s. It is a malformation of the brain in which the cerebellar tonsils at the rear of the brain are downwardly displaced, causing a variety of problematic and sometimes severe symptoms affecting the brainstem, cranial nerves, and the lower portion of the cerebellum. Particularly troubling is the fact that it is nearly impossible to diagnose early on, with the average age of diagnosis being 34.
Disallo, who is now working with local and state government as well as organizing support groups for Arnold-Chiari sufferers, said she had never even heard of the condition before she was affected herself.
“Back in 1995 I was in a car accident, and from that point on my neck never really felt right,” explained Disallo. “I’d go to the [doctor] and they’d tell me that arthritis had set in, but over time the pain just continued to plague me.
“At the time I had other symptoms that I didn’t connect with my neck, but I did have numbness in my fingers and in my toes, so finally I decided to go for a second opinion...I went in for an MRI and was told that it showed that I had Chiari and a kinked brain stem.”
Disallo said that this was the beginning of a very startling journey, which has led her to question and work toward changing many modern medical attitudes toward her condition. After being referred to a neurosurgeon who was more concerned with her neck pain than the development of Arnold-Chiari, Disallo decided to do her own research which led her to the Chiari Institute in Long Island, N.Y., where she is still undergoing tests and learning more about her condition.
“What bothers me most is that once I started talking with support groups online, it’s the same story over and over again. So many doctors pay very little attention to this condition and in many ways kind of brush it off. A lot of the people with Chiari are left with doctors telling them to see a psychiatrist, which is just a dead end.
“That’s why I wanted to go for a proclamation from the government, because I wanted doctors in Connecticut to be more aware of it and not just brush it off.”
Disallo also pointed out that without support, many Arnold-Chiari sufferers wind up paying out of pocket for treatment or additional tests at places like the Chiari Institute of New York. Surprisingly, it is not as rare of an ailment as many believe, with scientific documentation that it is as common as one case per thousand adults. It is Disallo’s hope that with the growth of support groups and the recent proclamation by Rell, that Arnold-Chiari awareness will continue to spread, and additional research will be funded to help those affected find alternatives to surgery.
“The word has got to get out there,” Disallo said, emphatically. “I’m not expecting every doctor to go out there and do extensive research, but at least be aware and don’t brush it off.”