The Barrow Hypothalamic Hamartoma Program now co-exists at St. Joseph's Hospital and Phoenix Children’s Hospital. Patients with this disease age 17 and younger will be treated at Phoenix Children’s. Those 18 years of age and older will be treated at St. Joseph's Hospital.
Recently developed surgical techniques to remove hypothalamic hamartomas offer new hope for families with children who suffer from these tumors. Barrow Neurological Institute provides comprehensive evaluation, diagnostic testing, and treatment for patients with hypothalamic hamartoma tumors.
Hypothalamic hamartomas (HH) are rare, benign tumors of the hypothalamus, a region of the brain that regulates many critical functions. Hypothalamic hamartomas affect children from infancy onward and commonly cause seizures, precocious puberty, abnormalities in endocrine function, and cognitive and behavioral problems. These tumors are most often found during the diagnostic evaluation of patients for epilepsy (particularly gelastic seizures) or precocious puberty.
Barrow Hypothalamic Hamartoma Program
Inaugurated in February of 2003, the Barrow Hypothalamic Hamartoma Program has now treated over 100 children and adults with refractory seizures and hypothalamic hamartoma. For those patients in whom treatment by medication is failing, we offer surgical treatment to eradicate the hypothalamic hamartoma lesion.
The specific treatment approach is based upon the individual anatomy of the hypothalamic hamartoma lesion (which varies tremendously from patient to patient) and the patient's unique clinical circumstances. Options include surgical resection by one of four different approaches, and Gamma Knife radiosurgery.
Barrow's Multidisciplinary Team Provides Treatment for Hypothalamic Hamartoma
The Hypothalamic Hamartoma Program at Barrow Neurological Institute is a multidisciplinary team designed to provide comprehensive evaluation, diagnostic testing, and definitive treatment for patients with hypothalamic hamartoma tumors. Through a team review of medical records, radiographic tests, and other diagnostic tests, a treatment plan is fashioned to meet the specific needs of each patient.
The Hypothalamic Hamartoma team is dedicated to continuity of care for each patient throughout the course of treatment, including diagnosis, treatment planning, discharge planning, and correspondence with other physicians involved in the patient's care. The team also conducts patient care conferences, supports collaboration between clinical and research specialists, and facilitates educational programs to advance the diagnosis and treatment of this disease.
Surgical Approaches to Hypothalamic Hamartoma
The Barrow Hypothalamic Hamartoma Program is greatly indebted to Dr. Jeffrey Rosenfeld, of Melbourne, Australia, who in 2001 developed a new surgical approach to hypothalamic hamartoma (the transcallosal approach). He is a pioneering figure in the development of hypothalamic hamartoma therapy. In February 2003, Dr. Rosenfeld traveled to Barrow to teach this approach to our staff.
Since then, our team has become skilled in using this approach for treating hypothalamic hamartomas. We have also refined other surgical approaches to the hypothalamic hamartoma lesion that are more appropriate for selected patients, including the endoscopic approach and the combined approach. In addition, the traditional surgery for hypothalamic hamartoma, a subtemporal or orbitozygomatic approach, is still ideal for some patients with hypothalamic hamartoma.
At Barrow, the surgical approach is tailored to the unique circumstances of each patient.
Hypothalamic hamartoma patients experience unusual seizures, and it is common for the diagnosis to be missed, and effective treatment to be delayed. As a result, the disease may progress, resulting in worsening seizures, developmental delays, emotional deterioration, and endocrine (hormonal) disturbances. Consequently, we feel it is our obligation to educate the community, including healthcare professionals, locally and worldwide, so that they will be able to properly diagnose patients with hypothalamic hamartoma.
As a rare and challenging disease, we believe that hypothalamic hamartoma patients are best evaluated and treated in centers that specialize in this condition. Our mission is to serve as a resource to the hypothalamic hamartoma community of patients and families throughout the world. We accomplish this goal by offering definitive treatment and education, and conducting research to benefit the hypothalamic hamartoma patients of the future.
For more information, please call 1-800-BARROW1 (227-7691) or (602) 406-7585.
Barrow Neurological Institute
St. Joseph's Hospital and Medical Center
350 West Thomas Road
Phoenix, Arizona 85013
For International Patients
Barrow Epilepsy Center | Neuroengineering/Human Neurophysiology Laboratory