Recovering After Epilepsy Surgery
In general, recovery after epilepsy surgery can take weeks to months. Though the hospital stay may be only a few days, it takes longer for the brain to heal, especially if an open surgery or craniotomy was done. Recovery from minimally invasive surgery or surgery to implant devices may be different.
- In the first week after surgery, people may have headaches, have an upset stomach, and feel tired. There may be temporary swelling of the forehead and area around the eye, as well as jaw pain on the side of surgery. People are usually given medication after surgery to help limit these post surgical symptoms.
- Most people are back to school or work in 4 to 6 weeks.
- The exact amount of recovery time will vary depending on the type of surgery done and how each person recovers.
- Gradually easing back into normal activities is best.
- It may take several months for a person’s attention span, thinking, or memory to reach baseline after surgery.
- Changes socially also may happen over months as people adjust to changes in their seizures.
Adjusting to a “New Normal”
During the recovery period, many people have to adjust to a “new normal.” They may feel uncertain about their seizures, even when seizures have stopped after surgery. Anti-seizure medications will typically remain the same for many months after surgery. Questions that commonly arise after surgery include
- When can I drive?
- Can I return to work?
- Am I able to take on day-to-day activities more independently?
- When can I get back to physical activities I enjoy?
The answers to these questions are different for each person. It’s important to talk to your epilepsy team during your recovery about what to expect over time.
What are the common emotional and social impacts of epilepsy surgery?
It is important to consider common emotional and social aspects (known as psychosocial impacts) a person and their family or caregiver may have before, during, and after surgery. People may react to surgery and hospitalization uniquely, with a range of emotions.
Common themes for people living with epilepsy and family members during the journey through epilepsy surgery include
Impact on social identity and relationships
- People may struggle with fear of the unknown - this may affect social identity (how they see themselves) and relationships.
- If seizures become controlled, the person who had surgery may feel “well” and want to do more than their family wants or is ready for.
- Family members may see the person differently. Struggles between the person with epilepsy and their family may need to be worked out.
Mood changes after surgery
- People who had difficulties with depression, anxiety, or other mood problems before surgery may notice continued problems after surgery. Sometimes the mood change will worsen and need different treatment.
- Others may notice temporary mood changes after surgery that could be related to changes in medicine or the stress of the work up and hospitalization.
- Operating on the brain can also affect mood centers in the brain that need to quiet down and recover after surgery.
- People who are at risk for mood changes after surgery should see a psychiatrist before and after surgery. This team member can adjust and monitor medicines if needed.
- Seeing a psychiatrist, social worker, or other counselor is not a sign of weakness. It’s an important step to get and stay emotionally healthy.
Effect on body image
- People often worry that their physical appearance may be changed by surgery.
- This can cause people to feel self-consciousness about their appearance or worry about what loved ones may think.
- If you have concerns about your appearance or a scar after surgery, talk with your surgeon and other team members about what to expect. Share your concerns about the short- and long-term physical changes that will occur after surgery. Your epilepsy team can help you make a plan to deal with these changes.
Neurological function following resection
- Individuals and families may worry or have anxiety about the risks of surgery and if there will be long-term changes in how a person functions after surgery.
- Neurological risks are very low, but may include worsening of memory, changes in speech, loss of vision, or weakness. The risks vary depending on what part of the brain was operated on. Some procedures have very low risks, some higher.
- Many people who have had epilepsy surgery talk about how helpful it was to understand possible outcomes after surgery. They found it useful to take time to prepare good coping skills and develop a support plan prior to surgery.
Activity after surgery
- Activity may be temporarily restricted after surgery. A person may worry they are a burden to friends or family once they are home.
- After surgery, a person may be limited in what they can lift or certain activities in the first month or so.
- Usually people can take care of themselves (like bathing, dressing, eating, and walking) at the same level they did before surgery. If they needed help before surgery due to non-seizure related problems, they will still need this help after surgery.
- Usually, specialized physical therapy (PT) or home health assistance is not needed after surgery. If a person had complications like weakness or balance problems after surgery, rehabilitation, PT, or other supports in the home may help their recovery.
Increasing independence and quality of life
- The hope of increased independence related to successful surgery is typically a major goal for surgery. How realistic this goal is depends on many factors.
- After surgery, it’s important for people to work with their epilepsy team to meet the goals they set before surgery. People may need other supports to achieve these goals.
- Getting a driver’s license will depend on how long a person has been seizure free after surgery and the law in their particular state. People will continue to need transportation help for months or in some cases long term.
- Getting a job may require more school or training. Seeing a vocational counselor or rehabilitation expert can be very helpful as you work towards new goals.
- For many people, an improvement in learning and school performance can occur after surgery. This is a result of better seizure control and in some cases having to take less seizure medication. Despite this positive outcome, it is still important to continue to work with a school counselor and to keep an individualized education plan (IEP) in place. This will help to ensure that you have the best educational experience possible.
Recovering from epilepsy surgery is a journey. Surgery itself should be thought of as the halfway point in the journey – not the end point. This section highlighted just a few points about the recovery process.
- Use this information to help you think about what you may need and get supports in place before you have surgery.
- Most importantly, remember that this is a journey. Let yourself have the time you need to recover and move forward.
- As you recover, contact your local Eplepsy Foundation for support. Many have support groups or networks for people who have had surgery, offer employment programs, and can link you to community resources.
- Visit epilepsy.com community forums and chat room to connect virtually with people who have been through similar experiences.
- Call the Epilepsy & Seizures 24/7 Helpline at 1-800-332-1000 (en Español 1-866-748-8008) for information and referrals to other support services.
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