Adapting to Life Changes after Surgery for Seizures

Epilepsy surgery is something that many people undergo after trying medication and other therapies that do not work. Since it is a neurosurgery (brain surgery), there is a lot of uncertainty and concern about what will happen after the procedure. If you are discussing the possibility of surgery with your neurosurgeon and epilepsy care team, here are some things to know about life after epilepsy surgery.

Discuss Your Goals & Expectations

Before you make the decision to get epilepsy surgery, discuss your goal and expectations with your neurosurgeon. He or she can help you understand what is realistic based on your individual condition. Your goals may include:

  • eliminating seizures entirely,
  • experiencing fewer seizures overall,
  • experiencing fewer debilitating or disabling seizures,
  • increasing independence or the ability to live on your own, or
  • reducing or eliminating your medication.

Defining what a “successful” outcome looks like can help you feel more comfortable with the procedure and what life will be like after epilepsy surgery.

For example, your epilepsy doctor may tell you that surgery won’t eliminate your seizures entirely, but can significantly reduce them. In another case, you may be seizure-free, but only as long as you continue taking medication. Both of those outcomes can improve quality of life and independence.

Epilepsy Brain Surgery Recovery Time

After any epilepsy surgery, you will stay overnight in the hospital to recover while doctors and nurses observe you. The length of your hospital stay will depend on the type of surgery you get and your health overall.

After you return home from the hospital, it could take several weeks to fully recover from the procedure. Most patients are able to go back to work or school within about four to six weeks. Recovery time is different for everyone and may be longer depending on the type of surgery you get, your health, and other medical conditions. However, recovery from minimally invasive procedures like laser ablation surgery may be shorter.

You will have regular follow-up appointments with your neurologist following the procedure to discuss your recovery and progress.

Epilepsy Surgery Side Effects during Recovery

The most common side effects people report in the first week after epilepsy surgery include:

  • feeling tired or fatigued,
  • headaches,
  • upset stomach or nausea,
  • swelling around the forehead and eyes, and
  • jaw pain on the side of the surgery.

Your doctor will prescribe medication to help with the pain. If you continue to experience these side effects several weeks after surgery, tell your doctor right away.

Anti-Seizure Medications

Most patients will continue taking anti-seizure medication after surgery. Talk to your epilepsy doctor about what medication you should take and how often, as well as how long you should continue taking it. Some patients will need to continue taking anti-seizure medications for several months or years, while others will slowly scale back medications or stop taking them entirely. Your epilepsy doctors will make that decision based on:

  • how well your seizures are controlled,
  • causes of your epilepsy, and
  • risk of seizures if you stop the medication.

Never stop or change medications without talking to your doctor.

After Epilepsy Surgery: Emotional & Social Changes

Beyond physical recovery, there are also emotional and social changes after epilepsy surgery. These changes impact you as well as your family, caregivers, friends, co-workers, and others in your life. Preparing for and addressing these emotional and social changes is important. Your doctor and epilepsy care team can help you find resources as you adjust to your new life.

Relationships and Self-Image

One of the most common things people deal with after surgery is a change in relationships and how you feel about yourself. 

  • Fear — You may struggle with a fear of the unknown, especially right after surgery when you are not sure whether your seizures will continue or return.
  • Independence — When your seizures are controlled or gone you may want to have more independence from family or caregivers.
  • Body image — You may be concerned about changes to your appearance, particularly if you get a craniotomy or open surgery that involves shaving your hair. Talk to your doctors before surgery about what physical changes and scarring you can expect. You may want to discuss your feelings and concerns with a neuropsychologist, who can help you create a plan to deal with these changes. 

If you have a family member or a caregiver who has been involved in your care, the transition to independence after surgery can be very challenging. Your family may experience feelings like: 

  • helplessness as they wait to see what will happen and whether your surgery will be successful,
  • hope for a positive outcome and more independence,
  • difficulty adjusting to a role where you are more independent and do not need them as much, and
  • uncertainty about how much support and advocacy you need during and after surgery.

Family members or caregivers experiencing these feelings should consider talking to a psychiatrist, social worker, or counselor.

Brain Changes after Surgery

Neurological Function

If you are concerned about neurological function or the risk of long-term changes in your brain function, talk to your doctor before surgery. The most common concerns are:

  • changes in memory,
  • changes in speech,
  • vision changes or loss, and
  • weakness or muscle function.

It’s important to know that the chance of long-term impact on these things is very low with most epilepsy surgeries, especially minimally invasive procedures. For many people, the risk of not getting surgery and having seizures continue is much greater than the risk of complications after surgery.

If your surgery does have higher complication risks, prepare in advance by learning coping skills and developing a support plan for after the surgery.

Mood Changes

Neurosurgery and recovery can impact many parts of your brain, including mood centers. Some patients may not experience any changes, while others may have temporary changes in mood from medications or while your brain heals. Surgery and hospitalization can also increase stress levels, leading to anxiety and depression for patients and family members.

Depression and anxiety can carry over from before surgery and could continue or even get worse after treatment. Talk to your epilepsy care team about seeing a neuropsychologist, social worker, or counselor before and after epilepsy surgery if you have depression or anxiety.

Returning to Everyday Life

In the days and weeks after surgery, your activities will be restricted as your brain heals. It may take several weeks or months to feel like you are back to “normal” after the procedure. You may notice some changes in your:

  • attention span,
  • ability to think, and
  • memory function.

It’s important to have someone who can care for you during this time. While most people can take care of basic personal needs, such as eating, bathing, dressing, and walking, there will be limitations on what you can do.

If you get help from a caregiver for things that are not related to your seizures, you will still need this care after the surgery. If you experience complications like balance problems or muscle weakness, you may need additional help from a home health agency, family, or friends after the surgery.

Driving

One of the main goals of epilepsy surgery is to increase independence. If one of your goals is to get a driver’s license, research the laws in your state to learn how long you must be seizure-free before you can apply. You will need someone to drive you to follow-up appointments after surgery and may need additional transportation help beyond the initial recovery period.

Work & School

If you plan to get a job or go back to school after epilepsy surgery, a vocational counselor or rehabilitation expert can help you set goals and identify

Finding Support

For many people, epilepsy surgery is not the end of the journey. It is a pivotal point in the journey that allows you to move toward independence and better health. Discuss your goals and expectations with friends and family members who can help you on the journey. You can also find local epilepsy support groups or networks of people who can offer emotional support and help you find resources along the way.