Some people with epilepsy have seizures that are resistant to medication, meaning the person continues to have seizures despite taking antiseizure medication. We call this drug resistant epilepsy.
Epilepsy surgery represents a valuable treatment option for some people with drug-resistant epilepsy. However, surgery for epilepsy remains, arguably, the most underutilised of all acceptable epilepsy treatments, and the reasons for this are unclear. Often people who are ideal surgical candidates are not recognised as such by general neurologists, but if more people with drug resistant epilepsy are referred to an epilepsy centre, then more surgical candidates may be identified as suitable. [i]
What is surgical treatment of epilepsy?
Epilepsy surgery is brain surgery intended to stop or reduce the number of seizures. Not everyone is suitable for epilepsy surgery, but your neurologist should be able to tell you if you may suitable. Surgery is effective for many people with drug resistant epilepsy, but it is not widely known about and underutilised. [ii]
Some surgical approaches to manage seizures include:
- Removing the part of your brain where the seizures start.
- Disconnecting brain nerve cell communication to stop the spread of seizures to other areas of your brain.
- Vagus nerve stimulation. Implanting a pacemaker-like device and electrodes that send electrical signals to block or disrupt seizure activity at its source.
- Deep brain stimulation. Electrodes are placed into deep parts of the brain and connected to a pacemaker-like device. These electrodes stimulate targeted areas to interrupt on abnormal circuitry within the brain.
- Inserting delicate electrode wires to record seizure activity from the depths of your brain. Such as the Minder® system.
Why epilepsy surgery?
Epilepsy surgery offers a chance to be seizure-free or at least to have a lot less seizures.
Surgery may also eventually allow your antiseizure medications to be reduced – although ongoing antiseizure medication is often necessary. This will depend on your circumstances.
There are emerging treatments, and your epilepsy specialist will be able to tell you if your type of epilepsy is suitable for surgical evaluation.
Surgery may be considered when:
- Seizures are resistant to medication and the person has trialled two or more appropriate anti-seizure medications.
- Seizures (or most seizures) originate from only one small region of the brain.
- Seizures are particularly debilitating or dangerous such as tonic, atonic seizures (drop attacks) and status epilepticus (very long seizures).
- Seizures are happening often, affecting day-to-day life considerably.
- The cause of seizures requires surgery, e.g. a tumour or abnormal brain tissue.
People who have had epilepsy for a shorter length of time are more likely to be seizure-free after seizure surgery[iii], but this does not mean you will not be seizure free if you have had epilepsy for a longer time.
Before surgery
The work up to epilepsy surgery is quite extensive. This is to help to pinpoint the area in the brain where the seizures begin, called the seizure focus, and to determine whether surgery is possible without causing harm or impairment.
The pre-surgical evaluation includes many tests. Some are done as an outpatient and some as an inpatient. This can be a stressful time.
At any stage during the pre-surgical work-up you can decide that you do not want to have surgery. Also be prepared that surgery may not be an option for you.
Surgery – who decides and when?
The decision to operate is only made after all the tests are done and is based on the results of these tests and a joint decision by the team, and of course, you wanting to proceed with surgery. Your chances of successful surgery and risks for complications will be explained to you by the surgeon.
The goal of epilepsy surgery is to improve quality of life by stopping or reducing the number or severity of seizures, without causing neurological impairment.
Life after surgery
Life after surgery can take a bit of adjustment.
Don’t expect to be jumping out of your skin immediately. Brain surgery is a big deal, and you need to take it easy for as long as your neurosurgeon recommends to physically heal. Post operative depression is relatively common as well, and although it is usually self-limiting, it can last several weeks.
If you gain seizure freedom after surgery, this is a massive change in your life and often this is a time people make life-changing decisions. Although a lot of these adjustments are positive, some people encounter difficulties adapting or find the experience overwhelming.
Do not be afraid to seek help if you feel you are not coping, as this can be a normal response.
It is important to remember that not all people who have epilepsy surgery are seizure-free following surgery, but there is usually a decrease in seizures. This can be very disappointing for you, so it is good to discuss this before surgery and be mentally prepared.
Some people may have some seizures immediately after surgery, but this does not mean that the surgery has not been successful.
Note about driving: The driving licensing authority enforces no driving for 12 months after surgery. This will be extended if you have any seizures.
Speak to your neurologist before drinking alcohol or taking other medications or drugs.
Personal Story
Read Dominic’s epilepsy surgery story here.
Conclusion
All people with drug-resistant epilepsy, that is, failure of two appropriate trials of antiseizure medication due to inefficacy and not intolerance, who continue to have seizures should be referred to an epilepsy centre. Early referral provides the best opportunity to avoid irreversible psychological and social problems, a lifetime of disability, and risk of injury or premature death. [i]
However, if your seizures aren’t controlled, it is important to see an epilepsy specialist who will determine if you might benefit from epilepsy surgery.
