Recently many articles have been published about epilepsy surgery. Studies of outcomes after surgery show that seizure control matters, but people with or without good seizure control may have problems managing life after surgery.
- Believe it or not, it can be hard to live with life without seizures. It may take a while to let go of the worry about when the next seizure may occur or become more independent and try new opportunities.
- For many people, problems other than seizures may remain. For example learning difficulties may still affect how someone does in school, their choice of job, or just their enjoyment from reading and pursuing other activities.
- Mood problems such as depression or anxiety may still occur after surgery and for some, may temporarily worsen. Some of the mood changes may go away as the brain ‘calms’ down after surgery and if seizure control lessens. But for other people, depression or mood changes may become a chronic problem that requires help.
- Changes in work life or other activity is a goal for many people, however, improvements or changes may depend on many factors. For example, seizures, learning difficulties, depression or other problems could all impact a person’s ability to work or the type of work or activity they choose.
What does all this mean for the person considering surgery?
- Before surgery, talk to your epilepsy team about the problems that are affecting your daily life and what you hope to change after surgery. Then think about what would happen if you still had seizures, but less often, or do these life changes depend on being seizure free? Thinking about these issues ahead of time can help you have realistic expectations and plan appropriately.
- Write down the problems you and your family would like to see changed after surgery and, together with your epilepsy team, start thinking about what type of rehabilitation will help you achieve these. Surgery won’t do it alone.
- Get a counselor who can help you find resources, within your health care group or in your community, for you and your family. For example, you may need one or more of the following:
- Help with schoolwork, accommodations or learning new skills
- Vocational help, accommodations at work, or getting a new job or skills
- Changes in relationships or your role(s) within your family or community
- Respite help
- Independent living help
- Emotional and social support
Whatever your needs, remember that it’s okay to ask for help! It may take time and energy finding the right help, but don’t give up. Your local Epilepsy Foundation would be a great place to start. Start here to find resources for rehabilitation and life after surgery- Find an Epilepsy Foundation Affiliate and Find an Epilepsy Center