Changing lives with laser surgery

Hypothalamic hamartoma (HH) is a type of rare, benign brain tumour arising from the hypothalamus deep in the brain. It is responsible for many ‘automatic’ brain functions such as controlling hunger, thirst, emotions and regulating hormones. These often-small tumours can cause seizures that present as laughing (gelastic) seizures or crying (dacrystic) seizures.

This type of epilepsy is a form of focal epilepsy, which means the seizures are arising from a specific part of the brain. Some patients respond very well to drugs, but for many others, surgery provides the only chance of reasonable seizure control.

Surgery for HH epilepsy is very complex as the tumours are located deep in the brain. Laser ablation is a technique designed to destroy abnormal brain tissue in an extremely targeted manner, while causing minimal damage to surrounding healthy tissues. Using a state-of-art laser surgeons can directly target the lesion in a minimally invasive way whilst protecting vital structures around the lesion.

Because the surgery is minimally invasive, patients recover from the operation much quicker and only normally spend 2-4 days in hospital as opposed to 10-14 days for traditional open neurosurgical techniques.

32 patients at GOSH have so far received surgery using this technique and we are the only centre in the UK currently offering this type of surgery for control of epilepsy in either children or adults. In October 2022 NHS England announced that they would be commissioning a national service to widen access to this surgery for children and adults across the UK with difficult to treat forms of focal epilepsy.

“Ellie had been having short episodes of laughing and crying since she was about 6 months old, but at the time we thought they were just her expressing her emotions. It wasn’t until she was three when we realised something was wrong. We were having breakfast and she laughed, seemingly out of nowhere, so I asked her what had tickled her. But she said she felt unwell and sad after laughing which was strange. I looked into this online and as soon as I read about HH and discussed it with my husband it just clicked to us that that was what she had.

"Ellie was having at least ten seizures a day and up to ten through the night, but at times this was as high as 50 and Ellie had to be hospitalised. The seizures were having a huge impact on her life as they left her exhausted and disoriented. We used to have to plan to do things with her in the morning only, as we knew by lunchtime, she would be so tired from the seizures."

Five-year-old Ellie from Royal Wootton Bassett is one of the children who has benefited from this surgery. She had a hypothalamic hamartoma treated with laser ablation in May 2022. Before surgery she was having up to 50 seizures a day.

"We tried very hard in those early days to not get our hopes up too much, as the team warned us anaesthetic can suppress seizures and that the surgery may only reduce and not completely stop the seizures. We were hopeful, but always touching wood!

"Six months after surgery our lives are so different. Ellie has just started school and it’s so wonderful to see her enjoying it. We were always watching her for signs of seizures because if they were different, we had to call an ambulance. We can now relax a lot more and she can now do all the normal things that children her age do without being interrupted by seizures or being exhausted. She loves swimming and playing with her little brother and her friends and has so much more confidence.”

The surgeries at GOSH have been possible thanks to a generous donation from The Gerald and Gail Ronson Family Foundation to GOSH Charity. In October 2022 NHS England announced that they would be commissioning a national service to widen access to this surgery for children and adults across the UK with difficult to treat forms of focal epilepsy.