Actress Kathryn Crosby moves onto new ‘stage’ to expand public recognition of little-known facial pain disease

GAINESVILLE, FL. (11/19/04)—Kathryn Crosby, actress and vocalist who became an icon of the musical world after her marriage to singing sensation Bing Crosby, is lending her voice in a new venue to build public awareness of the world’s most painful human disease.

Crosby, who still performs frequently at the invitation of fans throughout the United States and abroad, said the sufferings of a close friend motivated her to champion medical progress against trigeminal neuralgia (TN), a facial nerve disorder that afflicts people worldwide.

“My dear friend, Harriet Hirsch, the wife of my book publisher, endured agonizing bouts of TN pain for many years before finding treatment that has virtually eliminated her pain,” Crosby said. “When Harriet first began to experience the stabbing shock-like pains of TN more than a decade ago, it was obvious not many people knew about this disease. As she and other patients have discovered, friends and acquaintances may think you’re crazy when you talk about the pain, and you also may think you’re crazy until you meet people who understand the problem.”

Building awareness and understanding are Crosby’s goals as she assumes a new role as national spokesperson for the Trigeminal Neuralgia Association (TNA).  During an interview at TNA's mid-November national conference at Walt Disney World Resort in Orlando, Crosby said she aims to "get the word out" about the progress being made to improve diagnosis, develop better medicines and refine surgical treatment so that suffering can be stopped or relieved.

“I want people to see how far we’ve come…to know that today most patients can get relief from their pain, and that we now have neurosurgical teams trained to treat TN that are as special in their multi-specialty composition as open-heart surgery teams,” she said.

“People need to know TN isn’t an isolated disease…that although it most often afflicts women over age 50, it can happen to anyone anywhere, including children,” she said. “Today there’s no good reason for so many people to suffer excruciating pain for years. Microvascular decompression (MVD) surgery, which has been proven safe and is now performed almost like clockwork by experienced neurosurgeons, helps many patients with classic TN become pain free. And other procedures are proving effective for many patients with variations of the disease.”

Crosby, who is rapidly gaining an education on TN in order to be an articulate spokesperson, said she’s found it “very exciting to meet some incredibly dedicated people making progress against TN, including neurosurgeons Peter J. Jannetta and Kenneth F. Casey at Allegheny Hospital in Pittsburgh.” She recently joined the two nationally known TN experts on hospital rounds to see patients, and watched five operations involving the MVD procedure developed by Jannetta.

“When you talk with patients, you quickly find out each one is unique; each appears to have a different history of striking facial pain,” she said. “You also learn there are various facial pain disorders, including migraine headaches and temperomandibular joint dysfunction, that sometimes mimic trigeminal neuralgia and make diagnosis tricky.”

She noted that due to the variety of facial pain disorders that may start out with the characteristic pains of toothache or migraine, many patients have undergone unnecessary (and expensive) root canal surgery, as well as other dental and medical treatments that didn’t solve the underlying problem. 

“Now it’s wonderful to see that dentists like Dr. Parker Mahan and Dr. Henry Gremillion at the University of Florida have worked out ways to distinguish the facial pains of TN from dental pains in order to achieve an accurate diagnosis,” she said. Gremillion, who studied under Mahan for 15 years and now directs the Parker Mahan Facial Pain Research Center at the University of Florida College of Dentistry, leads a team of specialists skilled in identifying the specific traits that characterize different facial pain disorders.

“One major problem still confronting all the experts is the fact that many patients with severe or unusual forms of TN do not get lasting relief from any one procedure,” Crosby said. “The pain may come back, and the patient then faces the options of undergoing surgery again or finding other therapies.”

The promising news, she said, is that researchers are working to better define the causes of TN and to find long-term solutions.

In a tour of laboratories at the University of Florida’s McKnight Brain Institute shortly before TNA’s mid-November conference, Crosby discussed the future of research with internationally known neurosurgeon Albert L. Rhoton, Jr.

“What Doctor Rhoton talked about was a potential way, through applications of nanotechnology, to introduce genetically engineered body cells at the site where the protective myelin coating has worn off the trigeminal nerve, in order to regenerate that insulating sheath,” she said. “Currently surgeons in many cases put in a teflon sponge to pad and separate the trigeminal nerve from the blood vessel that’s compressing it, but Rhoton is talking about a way to help the nerves re-coat themselves so that the painful condition could be cured.”

Crosby said her earlier training as a surgical nurse (at Queen of Angels School of Nursing in Los Angeles) aids her new work in public education regarding a serious disease just beginning to be understood. Her advocacy role is one part of a busy life involving lots of travel to visit her sons, Harry and Nathaniel Crosby; daughter Mary Crosby and seven grandchildren. When at home, she said she loves early morning and greatly enjoys oil painting, the subjects of which usually connect with theatrical plays in which she and Bing performed.

The latest outcome of her creativity is a newly published book, My Last Years With Bing, the most comprehensive of three books she’s written on the personal and public highlights of life with her famous husband, who died in 1977. Her present life is obviously an extension of life with Bing, expressed in art, writing, music and theatrical performance. 

FOR FURTHER INFORMATION CONTACT:

Jane Boles, Executive Director/CEO

Trigeminal Neuralgia Association                 

925 NW 56th Terrace, Suite C , Gainesville, FL 32605

Web site:  WWW.ENDTHEPAIN.ORG  

Telephone:  352-331-7009 or 1.800.923.3608