Treatment options for hypothalamic hamartomas (HH) have increased dramatically in the last 10 years. When deciding on a treatment, it is important to discuss all options, the associated risks, and compare that to the potential long-term benefits. Make sure all your questions get answered completely, and that you trust the team of doctors who will be with you throughout the course of treatment. If you have to travel to another medical center for surgery or treatment, it is important that you establish a good relationship with the doctors in your local area that will be responsible for any follow-up care or treatments.
Treatment options for hypothalamic hamartomas and the associated seizures currently include:
The cause of HH is not known. There are studies that suggest that somatic mutations in the GL13 gene may be responsible. Regardless of the cause, the resulting challenges can be difficult to manage. While an HH may be benign as far as cell growth is concerned, it’s impact on the individual and those involved with that person’s care is anything but benign. It is common for the disorder to progress as the individual ages and the seizures worsen, becoming longer and more involved, and more seizure types develop. The seizures are often poorly controlled or completely unresponsive to the standard seizure medications. It is often at this stage, with the increase in numbers and types of seizures, when individual show signs of progressive cognitive decline and severe behavior problems.
We've compiled a list of hospitals offer services for HH patients. Some hospitals offer comprehensive multi-disciplinary care, while others offer very specialized treatments. Hope for HH does not endorse any hospitals or doctors or represent that this is a complete list of hospitals providing HH treatment and care.
- The Anatomy of Hamartoma
- Transcallosal (TC) Surgical Approach to Hypothalamic Hamartomas
These animations provide a unique look at hypothalamic hamartomas.
Courtesy of Barrow Neurological Institute