Who might be involved
in my care?
If you’ve been diagnosed with a cavernoma, you may be wondering what happens next and who will be involved in your care. The type of support you receive will depend on your symptoms and individual situation.
Your care team may include:
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Neurologist - Monitors your cavernoma, reviews your symptoms and manages medications.
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Neurosurgeon - May be consulted if surgery is being considered, particularly after a bleed or if seizures are difficult to control.
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Genetic Specialist - If cavernomas run in your family or if you have multiple cavernomas.
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Epilepsy Team - Helps manage seizures and adjust anti-seizure medication if needed.
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Other Specialists - Depending on your symptoms, this could include physiotherapists, occupational therapists, ophthalmologists, or neuropsychologists.
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Your GP - Coordinates your care and supports your overall health.
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Remember:
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Not all cavernomas require surgery. Many are safely monitored over time.
You are not alone. Having the right medical team and support network can make a real difference.
