Epilepsy is usually the first and most common symptom of brain involvement in patients with TSC. Early and aggressive treatment of the epilepsy is essential to improving the cognitive outcome, as well as the quality of life, as has been shown in various studies from our other centers. When medical treatment fails, evaluation for the possibility of epilepsy surgery should be considered early in every patient with TSC.
Multiple tubers appear as "cold" on Brain PET. This technique is useful for evaluation for epilepsy surgery.
The challenges of epilepsy surgery in a patient with TSC are more complex, but not insurmountable, in the hands of experienced epilepsy specialists and surgeons working as a team. At Cleveland Clinic Epilepsy Center we have established a multi-disciplinary team of dedicated pediatric and adult epilepsy specialists, neurosurgeons, neuropsychologists, neuroradiologists, functional neuroimaging experts, cognitive and behavior experts, health psychologists and bioethicists to administer epilepsy care to TSC patients. The team meets on a weekly basis to discuss the best individualized plan of care for patients with complex epilepsy.
Cleveland Clinic's Tuberous Sclerosis Program provides comprehensive longitudinal medical and surgical care to patients and families with tuberous sclerosis complex (TSC) via a coordinated multi-disciplinary program housed in the Cleveland Clinic Epilepsy Center.
Through this program, we also advance our understanding and treatment of Tuberous Sclerosis through collaborative research while providing an educational avenue to families with Tuberous Sclerosis.
Cleveland Clinic's Tuberous Sclerosis Program offers:
- A focused team approach from expert physicians who deliver comprehensive, multidisciplinary medical and surgical care. These physicians discuss patient care, as needed, to provide the best treatment option.
- A world-class reputation for diagnosing and treating TSC-related conditions, including one of the largest programs in the world for epilepsy evaluation, epilepsy surgery and treatment.
- A focus on families, with specialists who address the needs of adult and pediatric patients.
- Coordinated care so patients can access multiple services through one channel.
Outside of a focused TSC program, fragmented care could come from all directions. Managing a multi-organ dysfunction, follow-up screening, early intervention, treatment and counseling is challenging for the patient as well as the individual physicians seeing patients in different settings.
Instead, these responsibilities can be delegated to the TSC program where a dedicated team of specialized physicians in one tertiary care center share the medical information of a patient through electronic medical records, and provide individualized care through a specialized team approach. With this coordination, the program delivers seamless care to patients and their families.
There is no cure for TSC, but when we deliver care to patients via our TSC Program, we coordinate services that accommodate their ongoing needs from a staff of professionals who understand the condition. Cleveland Clinic's TSC Program will collaborate with the referring physicians, depending on the patient and family needs, and can serve as an expert and consultative arm while ongoing care is continued locally.
Continuing care from experts who understand Tuberous Sclerosis is the key to successfully managing the condition, mitigating its complications, and providing the best life possible to each individual and family with TSC.