Why is this surgery done?
You may need this surgery if you have medically refractory epilepsy (uncontrolled seizures). Patients who are still having breakthrough seizures despite being on multiple medications are considered for surgery to improve their quality of life. Sudden unexpected death in epilepsy is the leading cause of death for patients with epilepsy with a risk of one in 1,000 people each year, and is why uncontrolled epilepsy is so aggressively treated surgically with excellent results.
How is epilepsy surgery done?
There are three major categories of surgery:
- Formal brain surgery, where the sources of the seizures are removed through open surgery, which may lead to a permanent cure. Formal brain surgery is similar to brain tumor surgery. Sometimes patients have a diagnostic surgery where electrodes in the form of grids, strips or leads are placed and patients are monitored for approximately one week to help localize the exact areas of damaged brain that need to be removed to prevent seizures. If you need diagnostic surgery, you will stay in the hospital between the two operations. You will be completely asleep for both operations.
- Lesioning procedures, where small locations of the brain are burned to stimulate surgical removal, will not likely lead to a permanent cure. Lesioning procedures require you to have a stereotactic frame placed on your head and a special MRI done prior to going to the operating room. You will be asked to perform certain tasks in the operating room to increase the safety of the operation. You will typically stay 1 – 2 nights after surgery.
- Stimulation, where specific locations in the brain (anterior nucleus of the thalamus or the left vagus nerve in the neck) are stimulated to decrease and manage, but likely not permanently cure, the seizures. For stimulation surgeries, you will be completely asleep. For the vagus nerve stimulator (VNS) surgery, you will go home the same day of the procedure. VNS surgery is performed in two locations: the neck and the chest, where a battery (generator) similar to a pacemaker is placed. For deep brain stimulation (DBS), you will typically stay 1 – 2 nights in the hospital after surgery. DBS surgery is performed in two locations: the brain and the chest, where a battery (generator) similar to a pacemaker is placed.
What are my risks? What are common complications?
With any surgery there are risks. You should talk to your doctor about them. Some common complications include infection and risks from anesthesia. Anytime you undergo full anesthesia, there is a risk of stroke or neurological injury. Each different type of surgery carries its own set of risks that are unique.
What do I need to know before surgery?
All epilepsy surgery involves a very complex workup before any of the three categories of surgery is considered. Your team of doctors will help you decide what option is best for you. Before surgery can be scheduled, a neurologist (who does not do the surgery) and other healthcare providers will give you special testing to make sure you are good candidate for the operation. You will be asked to answer a lot of questions and may have other tests done before surgery. You should follow all instructions given to you before surgery. The amount of time you will spend in the hospital after a surgery should be short. After their first surgery, most patients require only one night in the hospital. It is very important that you do not take any blood thinning medication for one week before your surgery. This includes any vitamins, herbs and supplements that may have blood thinning components in them.
General discharge instructions
Your healthcare provider will give you specific instructions when leaving the hospital. Seizure medications should be continued, typically for at least 6 months even if there are no seizures present after surgery. Your neurologist will let you know when and how to decrease your medications.
Other important instructions are to shower daily keep your incisions clean with soap and water but do not immerse/soak your incisions under water (do not take a bath or swim). Do not touch/manipulate/scratch your incisions. Avoid straining or lifting heavy objects. Eat a well-balanced diet to help with healing. Make sure someone looks at your incisions every day and contacts your doctor’s office with any concerns. Most patients can resume normal activity a few weeks after surgery.
What should I expect while recovering?
You may be sore at the sites of your different incisions. If your surgery involves electrodes, there will be areas where leads were passed under the skin that may be uncomfortable; this is temporary, and will get better over time. You may feel more tired when first returning home. Be sure to rest; however, you should try to walk daily if possible. You should feel significantly better by the time you see your neurologist a few weeks after surgery.