Given the rarity of the diagnosis, most neurologists, neurosurgeons and centers are unlikely to encounter and treat even one HH patient let alone a significant volume of patients. It is critical to identify a neurology team including an epileptologist (a neurologist who specializes in epilepsy, seizure and treatments) and neurosurgeon who:
- understands HH and is up to date on treatment and care,
- can offer treatments individualized to the patient and their tumor,
- has the expertise and practical experience to achieve the best outcomes,
- is affiliated with a hospital that offers multi-disciplinary coordinated care to support pre and post-surgical evaluations and long-term management
It is important to note not all treatments are available at all centers in the United States and throughout the world. And some centers may develop a particular expertise in one treatment, while other centers may pride themselves on the breadth of treatments they offer.