Epilepsy care - for patients and families

Therefore, people with difficult-to-treat epilepsy can be referred to the Center for Advanced Epilepsy Care for an assessment. When the referral reaches us, a referral assessment is made which can lead to different levels of processing. Sometimes referrals are answered by letter with a recommendation for the appropriate investigation/treatment. Other times, a video conference is planned with the doctor who referred the patient. Sometimes a visit to one of the epilepsy specialists is needed, which can take place physically or via a video call. At this point, it is decided whether further investigation is needed. During such an investigation, a new magnetic camera examination, MRI, is often performed, aimed at looking for changes in the brain that cause epilepsy.

It may also be necessary to investigate whether there is a genetic or neurometabolic (disorder in cell metabolism that affects the nervous system) cause of the epilepsy. The occurrence of so-called epileptic activity in the outermost parts of the brain is measured with an electroencephalography, EEG. With video EEG, both adult patients and pediatric patients are admitted, in the latter case together with guardians, and seizures are then recorded with continuous EEG for several days with simultaneous video recording.

It can get a bit tedious during the video EEG recording. The EEG activity recorded from the brain is displayed on a screen. Illustration: Lars Agélii, from Epilepsiboken.

It is common to undergo many different examinations
There are also other examinations of the brain that can provide supplementary information - for example, so-called functional MRI where you examine where in the brain, for example, language or motor skills are located. Another examination is the positron emission tomography, PET, which measures the metabolism in the brain. There is also an examination called magnetoencephalography, MEG, which measures epileptic activity a little further into the brain. Many different examinations are often carried out to see if they give consistent results.

In some cases, an in-depth surgical investigation is needed using electrodes that are surgically inserted. The most common procedure entails placing the electrodes inside the brain via small drill holes using a method called stereo-EEG. Once the electrodes are in place, video recording is done with EEG and film in the same way as with "regular" video EEG. Sometimes this EEG registration concludes with treating the epileptic area with heat.

Listening to music during the MRI scan can be soothing. In the black marked box you can see thickened cerebral cortex which may be the cause of the epilepsy. Illustration: Lars Agélii, from Epilepsiboken.

Never knowing when the next epileptic seizure will come
The worst thing about epilepsy is probably the loss of control and powerlessness. You know that new seizures are coming, but you don't know when they will come and you can't do anything to stop them. Kristina Malmgren, senior physician and professor

Sofie’s decision
To get rid of her epileptic seizures, Sofie made a decision. She would undergo brain surgery. Watch the film about Sofie.