MANHASSET, NY -- Kalyn Blacklock, 35, of Austin, TX, was diagnosed in October 2005 by her hometown neurologist with a condition called Chiari malformation, a structural problem at the base of the skull where the back part of the brain called the cerebellum slips into the spinal canal. This results in compression of the brain stem and spinal cord.
As Ms. Blacklock researched online about treatment options, she was surprised to find relatively little clear recommendations for this condition. An Austin neurosurgeon recommended she undergo decompression surgery to relieve pressure on the brain, but five years after the surgery, she was still in a lot of pain. Ms. Blacklock researched online for physicians specializing in Chiari malformation, but did not find many who specialized in the condition. However, in July 2009, while watching the television show “Extreme Home Makeover,” the family whose house was being remodeled had a young daughter with Chiari malformation and she had received medical treatment from physicians at North Shore-LIJ’s Chiari Institute in Great Neck, NY.
Ms. Blacklock immediately called the Chiari Institute and a week later, she had an appointment with neurosurgeon Paolo Bolognese, MD, the institute's associate director. She was elated when Dr. Bolognese told her that she could be helped with surgery. Ms. Blacklock said of her visit, “Once I met with Dr. Bolognese, along with the nurses and staff, I was honestly in tears, not from fear of more surgeries or the battle ahead, but because Dr. Bolognese actually hugged me and said 'we will get you fixed.' From that moment, I knew I had a team to help me fight and I wasn't alone any more."
In 2009, neurosurgeon Salvatore Insinga, DO, also of North Shore-LIJ’s Chiari Institute, performed tethered cord surgery on Ms. Blacklock to free up her spinal cord, that was being stretched and causing tension. In 2010, Dr. Bolognese performed surgery to place a titanium mesh plate over Ms. Blacklock's skull, which covered the decompressed area of the brain and added protection. She would require two additional surgeries, but then the unthinkable happened in May 2011, when she was diagnosed with stage 2 ovarian cancer and had to have a hysterectomy, followed by chemotherapy. However, this past July, Ms. Blacklock received good news: the surgery and chemotherapy were successful and she received a clean bill of health.
With this second hurdle behind her, Ms. Blacklock is now refocusing her efforts in getting the remaining surgical treatments at North Shore-LIJ’s Chiari Institute and will be visiting Dr. Bolognese in coming months. To raise funds to increase awareness of Chiari malformation and educate patients about the physicians who treat the condition, as Ms. Blacklock started the Chiari Foundation -- https://support.northshorelij.com/Chiari.
She has also rallied her friends and families, and started a team called the “Chiari Warriors,” who will participate in several military-style, obstacle course competitions to raise funds. The longest race in the nation, called the “Tough Mudder,” is scheduled for this Saturday, October 6, 2012, at 9 a.m. at the Cross Creek Ranch in Paige, TX. For more information about the Chiari Warriors and upcoming races, go to https://www.facebook.com/ChiariWarriors.
For more information about North Shore-LIJ’s Chiari Institute go to http://www.chiariinstitute.com/ or to make an appointment, call (516) 570-4400.