Texas Woman Launches Chiari Foundation
 to Benefit North Shore-LIJ’s Chiari Institute

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.

The Chiari Institute is Moving to a New Location

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“We are very pleased to be moving to this new location as it will offer advanced on-site imaging services, eliminating extra travel time and providing additional ease in scheduling,” says Harold L. Rekate, MD, director of The Chiari Institute. “There are also various neurological and neurosurgical services available on-site, including pain management consultation. During this transition, patients are assured that they will continue to receive the highest quality of care to which they have become accustomed. The physicians, nurse practitioners, office management and staff will remain intact and all patient medical records will be transferred to our new location.”

For more information regarding The Chiari Institute please call (516) 570-4400, email TCI@nshs.edu or visit chiariinstitute.com.

To learn more about the Cushing Neuroscience Institute and our other services please call the Neuro Hotline (516) 562-3822, email neuro@nshs.edu or visit NeuroCni.com.

North Shore-LIJ’s Cushing Neuroscience Institute Announces the Hypothalamic Hamartoma Center

MANHASSET, NY – The Cushing Neuroscience Institute (CNI), part of the North Shore-LIJ Health System, announces the launch of the Hypothalamic Hamartoma Center (HHC), specializing in the comprehensive evaluation and treatment of this rare birth defect. 

A hypothalamic hamartoma is a benign brain lesion found in the hypothalamus, a small but critical area located deep within the brain and responsible for many of the automatic functions of the brain including hunger, thirst, temperature, and hormone regulation. A hypothalamic hamartoma can cause many types of seizures (or fits), premature puberty, and progressive deterioration of behavioral and cognitive function.

 “While hypothalamic hamartomas are debilitating, the good news is that surgical removal of this birth defect can often result in the patient having a normal or much improved life,” said Harold L. Rekate, MD, Director of CNI’s Hypothalamic Hamartoma Center. “Although several treatment options are available, the plan of clinical care must be strategically individualized because what may be appropriate for one patient, may be different for another depending on the anatomy of the lesion.” 

The HHC will be staffed with a multidisciplinary team of experts including:

• Harold L. Rekate, MD, FACS, FAAP, Neurosurgeon; Director of the HCC
• Ashesh Mehta, MD, Ph.D., Director, Surgical Epilepsy
  
• Steven J. Schneider, MD, FACS, FAAP, Neurosurgeon
  
• Cynthia L. Harden, MD, Director, Division of Epilepsy
  
• Josiane M. LaJoie, MD, Pediatric Epileptologist
  
• Jonathan Knisely, MD, Radiation Oncologist
  
• Sarah Schaffer, Ph.D., Neuropsychologist

“Since our physicians and specially trained experts are involved in all treatment plans and therapies, our Hypothalamic Hamartoma Center will serve as a prime destination for those suffering from this rare condition,” says Dr. Rekate.

Surgical removal of hypothalamic hamartoma involves working within the center of the brain, while protecting the many vital structures that surround the mass. The surrounding structures include all the arteries that supply the brain -- the areas of the brain that are responsible for memory, thirst, hunger passion, rage and all of the body’s hormone control. Avoiding these vital structures and yet removing this mass requires the ability to use different approaches in different patients. In most cases, the hamartoma can be removed using an endoscope through a very small hole in the skull. In some patients, more than one approach is necessary to completely remove the mass. Dr. Rekate is world-renowned for his extensive experience in the treatment of this rare disorder.

For more information about CNI’s Hypothalamic Hamartoma Center, please call 516-570-4400.

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