We make decisions every single day of our lives, from small things such as what to have for breakfast in the morning to much bigger ones like which shoes go best with this dress (only kidding!) The ones we make each day are hopefully stress free and second nature but there are some which just feel, well, heavier. They feel heavier due to the impact they will have on you, your life and the people you love. These are the ones which can change your path, sometimes for the better but what weighs on you is that it could be for the worse.
After many hours talking over our options, Tim and I decided on the biopsy route. This could potentially open doors to targeted treatments more tailored to Eleanor’s specific type of tumour. In our opinion this option gave us the most potential to keep radiotherapy as far in the future as possible.
Surgery, of any kind is not without risk, but brain surgery is right up there when it comes to risky procedures. A slight bleed could cause a stroke and Eleanor’s tumour is deep in the centre of her brain with the hypothalamus and optic nerves in close proximity.
The hypothalamus is responsible for a multitude of functions including; releasing hormones, regulating body temperature, controlling appetite and regulating emotional responses. Any damage to the hypothalamus could cause Eleanor irreversible problems with growth, weight, water balance and sleep cycles, to name a few!
An appointment was arranged for us to meet with Miss Samantha Hettige, a neurosurgeon based at St Georges Hospital, but in the meantime Tim did some research and found another neurosurgeon based at Kings Hospital, Mr Bassel Zebian, and contacted him for another opinion. Mr Zebian came back to Tim almost immediately and following an hour long phone call Tim established that he knew all about Eleanor’s case and had another option to throw into the ring. Like we needed any more decisions to make! So we made an appointment to also meet with Mr Zebian at Kings the following week.
During our meeting with Mr Zebian he explained that he would be able to do a slightly different procedure which is unique to Kings College Hospital, to potentially remove a small amount of Eleanor’s tumour, using a minimally invasive approach, carrying out what’s known as ‘transchoroid debulking’. He also recommended another procedure called a septum pellucidotomy, which effectively creates a small hole in the membrane between the two lateral ventricles, allowing cerebrospinal fluid (CSF) to flow if one ventricle gets blocked by tumour growth. A blockage can cause a build up of CSF within a ventricle causing it to enlarge, CSF could also leak out into other areas of the brain causing hydrocephalus. It was clear from Eleanor’s recent scans (including one performed at Kings on the day of our meeting) that one of the lateral ventricles in Eleanor’s brain had enlarged over time and she was heading to a point where this could cause a problem.
Mr Zebian gave us hours of his time that day (and on his week off!) and I think before we left that meeting Tim and I already knew we wanted him to perform Eleanor’s operation. Our meeting with Miss Hettige at St Georges had gone well, she answered all the questions we had and more, but to achieve the same results at this hospital, Eleanor would have to have a much more extensive neurosurgical procedure with a much longer recovery time.
So we have made our decision. We just have to wait for a date now!