Brain Surgery - it's an option for me , now what?

The results all give surgery the green light for you. Now it's time to chat through your options with your epilepsy doctor - this includes risks and recovery times.

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

The results all give surgery the green light for you. Now it’s time to chat through your options with your epilepsy doctor – this includes risks and recovery times. The time you spend together with your doctor is yours to discuss the best way forward, to ask the questions that are on your mind and get the answers you need to make your decision. You have a voice. And your time with your epilepsy doctor is the time to use it. If there’s anything you don’t understand - say so. If they’re moving too fast – say so. And if you feel like things are being dumbed down too much – say that too. It’s important you have an honest and open relationship with your epilepsy team. Just like us, we’re in this together to support you.

What are the different types of surgery?

Depending on your test results, you may be better suited to a specific type of surgery. Let’s have a look at what the different types may be:

This is the most common type of epilepsy surgery. It involves removing the part of the brain that causes your seizures, often referred to as a ‘lesion’.  An MRI scan will pinpoint this area to your epilepsy doctor and allow you both to make an informed decision.

There are several types of resection surgery:

  • Lesionectomy:  Removes tumours, lesions or other damaged tissue
  • Temporal lobectomy: Where the problematic brain tissue is identified in the temporal lobes and removed
  • Extratemporal resection: This surgery removes the brain tissue responsible for your seizures that’s not located in your

Doctors consider this type of surgery to reduce the impact of seizures. This is when the main connection between the two sides of the brain is cut. It prevents the seizures from spreading from one side of the brain to the other.

 For more rare cases, this surgery involves removing the outer layer of one side of the brain.

Will it cure my epilepsy?

There’s no guarantee that brain surgery will cure your epilepsy completely and there’s lots of different types of surgery to consider. However, all of them aim to reduce or stop your seizures.

What are the risks of surgery?

You’re young. You’re in the prime of your life and age is your advantage. Research shows that younger brains are better able to cope with the changes brain surgery makes. It also suggests that the earlier you have your surgery, the better the outcome will be, but this is still debated.

Of course, every operation has risks. Every human body responds differently to anaesthetic and has different pain thresholds. The risks with epilepsy surgery depend greatly on the type of surgery you have. Risks and side effects include mood swings, loss of movement and memory. But on the flipside, surgery can also improve these very same things.

Where do I go for brain surgery?

There are four centres nationally that are dedicated to epilepsy surgery for young people. These are Birmingham, Bristol, Liverpool/Manchester and Great Ormond Street Hospital. However, if you’re over 18 you may be referred locally.

Recovery after surgery

After your op you’ll stay in hospital, at one of the four national centres or wherever you’re referred locally, for a little while to be closely monitored. Depending on the type of surgery you’ve had, you may be sent to a specialist centre to help you recover. Your brain heals itself by making and reinforcing new neural networks. Your brain does this every day when you learn something or master a new skill. The more these pathways are used the stronger they get. This is why practise makes perfect and why specialists will work with you for up to 12 weeks after your surgery.

“…it’s 5 weeks on to the day and I have not had a full seizure. It’s so
strange not getting the tunnel vision, feeling sick and not being able to walk for about 30 minutes but believe me, it’s a very good strange!”
Annie (Young Epilepsy Young Rep)

What can our post-surgery rehab centre support give insight on?

It's hard to predict how long it will take you to recover fully. Some research suggests two years on average, while other suggests longer. The most important thing to remember is that it’s not a race. Your recovery is unique to you and no-one else. Don’t compare your recovery to others. Focus on how far you’ve come and everything you’re going to smash when you’re in full health.

And if you need some inspiration – follow Annie’s story, as someone leading the road to recovery. And a new life.

Do you use or have you ever considered treatment other than meds?
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