Brain Surgery - is it an option for me?

You've heard it hundreds of times when people shrug off tasks they consider simple, 'It's not brain surgery.' But what happens when it is? And what does it involve?
Brain surgery offers treatment of epilepsy and seizure management and is an option for some young people with epilepsy. There are different types of surgery which we’ll explain more in a moment and different risks. Brain surgery is an incredibly difficult decision. It’s not for everyone. It needs lots of consideration and your questions need to be answered. And that’s exactly what we’re here to do with the support of your epilepsy doctor.

Is brain surgery right for me?

You are unique. There’s no-one else like you and no brain like yours. Just as everyone’s epilepsy is slightly different, not all epilepsy treatments will work for everyone. The same applies to brain surgery.

So, can I consider it?

The National Institute for Health and Care Excellence (NICE) have some guidance on this. They currently advise that if you have tried two different types of anti-epileptic drugs (AEDs) that are right for you and you’re still not seizure-free, your doctor should refer you for consideration of brain surgery. Surgery is considered for specific types of epilepsy and seizures – especially if your epilepsy is caused by a specific location in your brain.

How do I broach the subject of surgery with my doctor?

There may be a reason why your epilepsy doctor hasn’t mentioned surgery. But this doesn’t mean you can’t. You know your body inside out. That’s a superpower we don’t need to tell you about. But your epilepsy doctor also knows what’s best for your body and will work with you to find the best possible treatment for your epilepsy.

What if surgery isn’t recommended for me?

Don’t assume this is your only option.  There are lots of alternatives to surgery that may manage your seizures and suit your body better. Changing your diet and swapping to a Ketogenic diet may be one option and Vagus Nerve Stimulation (VNS) may be another.

What should I ask my epilepsy doctor?

You should ask your epilepsy doctor what you should expect before and after surgery, how long your recovery could take, the risks involved and if there’s anyone who’s recently had the surgery that you could chat to for advice. The NHS offers some great tips on this here.

 

If your epilepsy doctor thinks surgery could be an option for you, they’ll talk you through the pre-surgery process. This usually involves a series of tests and medical investigations (imaging) to check the suitability of surgery for you. Most of the time these tests take place at one of the four specialist centres nationally that we mention below.

What do the tests involve?

Any operation can trigger anxiety and nerves. Some people love hospitals, others hate them and it’s important you’re emotionally prepared to cope with the operation as much as you are physically. You’re no stranger to tests. You’ve had them throughout your school life for academic reasons and the same for health purposes too. If you’ve been for a uni or job interview you may have taken a psychometric test to see how compatible you’ll be for your course, campus and colleagues. The same applies for surgery. There may be several psychometric tests for you and your family to complete. These will assess how you will all cope with the potential outcomes of surgery. You’ll also probably have an MRI scan or Electroencephalogram (EEG - a test used to detect problems related to electrical activity of the brain) to help identify the triggers and patterns of your seizures and how they behave. Other scans that may be new to you are SPECT and PECT scans. These use (Single-)Photon Emission Computerised Technology. This allows your doctor to see your internal organs using a radioactive substance and camera to produce 3D images.

You’ve probably already had an EEG scan and know what to expect. Rest assured – all of these tests are to make sure that surgery is right for you.

The tests show whether surgeons can reach the area of your brain that’s at the root of your epilepsy, without damaging other parts of the brain or neural networks. The results will show how surgery could affect other parts of your brain and any possible side effects. And most importantly, the tests will determine if surgery is right for you.

Great Ormond Street offers some advice here. 

Ok, Brain surgery is an option for me – now what?

If the results are giving you the green light, head over to see what your next steps are here. 

Click Here

You might also be interested in