Patty Shafer, RN, MN
Epilepsy.com Resource Specialist
We’ve heard a lot about benefits and risks of surgery in recent weeks. Now let’s think about the implications for people undergoing surgery. What’s the ‘timeline’ for change after surgery- what should people expect and how do they prepare for changes after surgery?
How long will I be in the hospital? This is a great question! When I first started working in epilepsy people stayed in the hospital about 10 days after surgery. However, the trend is to get people home a lot quicker, depending on how the surgery went and how they feel in the first few days after surgery.
What can I expect in the first few weeks after surgery? Initially, people will notice headaches, swelling of the scalp where the surgery was done and around the eye (maybe even some bruising), and stomach upset. Depending on the location of the surgery, a person may feel some weakness or change in sensation on one side of the body, or even some difficulty talking or understanding. These changes are often due to swelling in the brain after surgery and get better as the swelling goes down. If any of these problems don’t go away, they should be reported to your surgeon immediately.
Are there long term side effects? Again, these may vary with the area of brain operated on. If a person has surgery in the temporal lobe, they may notice that they have a slight visual field cut. This means that they may not be able to see a small area in the upper portion of their vision on one side. This usually doesn’t cause any problems with daily activities.
What about changes in cognition, for example attention or memory? Everyone should have neuropsychological testing before surgery, so they can learn what their strengths are, areas of difficulty, and the potential for problems after surgery. If the risk for causing more cognitive problems is too great, then surgery is usually not recommended.
Other times the possible changes in attention, memory and language need to be weighed against benefits of surgery. For example, some people may notice that their cognitive function improves, if the area causing the seizures is removed and it lets the rest of the brain function normally or up to it’s ‘best’ level. Other times, people may notice some more memory problems or difficulty finding words than they had before, but other cognitive functions may be better. People considering epilepsy surgery should make sure they have all the proper testing beforehand, and talk to all their health care providers about the pros and cons of surgery.
Will my attention or other problems get better over time? The answer to this is often ‘yes’. Think of the actual surgery as ‘jostling’ the brain. It needs time to calm down after surgery, which often takes months to a year or more. People who have neuropsychology testing after surgery usually do better 1 and 2 years or more after surgery then a few months after surgery. This is an important point for people to remember! Don’t expect everything to change right away! You need to give your brain and body time to heal and this may take months or years.
How soon after surgery will I see changes in seizures? The extent of seizure control after surgery will depend on the area of brain operated on and what type of operation is done. It’s not uncommon for people to have sporadic seizures in the early days or weeks after surgery, which may be due to other medicines given during the hospitalization, changes in seizure medicine levels, or expected swelling in the brain after surgery for example. As the acute period calms down, so too should seizures. Yet, some people may never have another seizure after surgery. Some studies show that long-term seizure control is not influenced by seizures that occur early after surgery, but others state that the longer time seizure free, the better the chance for long term seizure control.
How long will it take to resume normal activity after surgery? The answer to this question will depend in large part to what kind of activity you did before surgery. It’s best to plan a few weeks to a month of taking it easy, gradually building up your stamina and strength, and letting the swelling and headaches from the brain calm down. The surgeon and epilepsy team working with you will give you specific time frames for what you can do when. To be realistic however, consider a few scenarios:
If you take care of young children in your home, can you get extra help from your family and friends? You’ll need to make sure you get adequate rest/sleep and can pace yourself, a hard thing to do when you are caring for children!
If you have a very physical job, outside of the home or in the home, you may need extra time before you are allowed to do heavy lifting, climbing ladders etc. Talk to your surgeon about this.
If you have a job that relies on quick thinking, memory, concentration, or language, it may take you a bit longer to get back to your usual job than you’d think. Personally, I think the more demanding mentally the job or activity, the slower you may need to start out. For example, can you start out part-time and build up your hours? Can you get help with some tasks that require intense concentration or long hours?
Most people notice that over time they feel more comfortable and at ease with their activities, but some people find that what they did before surgery isn’t what they want to do after surgery! Either because you have some difficulties or you find that you are functioning better than before surgery, it may be time to reconsider your life choices.
Will there be any change in relationships with other people? This is an interesting question and unfortunately, one that many don’t talk about beforehand.
If a person has been socially isolated or had problems interacting with others before hand, those same problems may exist afterwards. Talking to a therapist and getting involved in a social skills group is often helpful.
If depression or anxiety has been part of the problem, treatment for it should continue after surgery. Research has shown that mood has a greater impact on quality of life than seizures alone.
A person’s perception of themselves as ‘sick’ or ‘well’ may change after surgery. Let’s say seizures are well controlled after surgery and the person is getting more independent and confident. They may not need the help from family and friends that they needed before surgery. However, other people’s perceptions of ‘sick’ or ‘well’, safety concerns, or independence may not change at the same rate as the person’s with epilepsy. These changes may create conflicts and need to be worked out together with family and friends.
Sometimes changes occur in relationships that can’t be fixed. People change as they go through major life events and epilepsy surgery is one of these. A higher rate of divorce has been seen in some people after surgery, possibly due to all these issues. It will take work from everyone involved to be willing to look at the changes to the individual and on the family system and relationships, and be committed to working towards a new balance.
I hope these thoughts help people consider the broader ramifications of epilepsy surgery and realize that surgery is not the endpoint in your care, but the halfway point. It likely took years for the seizures and consequences of seizures to develop, and it will take time for them to resolve and for families to find new ways of coping after surgery. To do this, people should be committed to rehabilitation after surgery – a time to recover, rejuvenate, resume activities and relationships or alter them, and create a new view of life, with or without seizures.
Best wishes for a safe week!
by Patricia Osborne Shafer RN, MN
Resource Specialist, epilepsy.com
Last Reviewed: 11/14/2012
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