I was first diagnosed with my Cavernoma when I was 18.
I was out shopping and felt completely normal – the next thing all I could see was the bottom of a clothing rail. It then felt like I was opening and closing my eyes continuously. I realised I was in an ambulance, and I then remember being rushed down a hospital corridor, then to a hospital room.
It turns out I had had five seizures in a row. Doctors did an MRI scan in the hospital and found I had loads of cavernomas – including a very large one on the left side of my brain. At the same time, they diagnosed me with epilepsy. I couldn’t believe what I was hearing.
I was put on epilepsy medication that I am still on today, 14 years later, and will likely be on for the rest of my life. I was having yearly MRI scans to keep an eye on my cavernomas. The left one has been growing and bleeding but luckily I haven’t had a big seizure in five years. I still have focal seizures which cause me to completely switch off from everything around me. Someone could be talking to me but I won’t be able to understand what their saying and can’t move my body or speak. It is scary because even though the epilepsy is controlled by medication I can still have the seizures at any point.
My family and cavernoma
Cavernomas run in my family and I knew there was always a 50/50 chance my children would have them. Unfortunately, both of my sons have them.
My first son Leo was diagnosed with cavernomas when he was 18 months old after having two seizures. His cavernomas are the same as mine – he has loads of little ones and a big one on the left side of his brain. He’s now 6 and luckily hasn’t had any more problems. However, because there have been a lot of changes since his first scan, they want to operate to remove one of his cavernomas which has been growing and bleeding. The location of this cavernoma means that, if there was a bad bleed it could cause hydrocephalus, so doctors are keen to remove it to reduce the risk of this happening.
Unfortunately my second son Mason is in an even more dangerous situation with his cavernoma. He was diagnosed with his cavermoma when he was 9 months old. He had a cold for over two weeks that wasn’t getting better so we took him to the walk-in centre to get him checked. We got told he had bronchiolitis but what was strange was that his right eye looked like it was drooping. We got sent to Alder Hey to get checked.
By the time they saw him it was really late and he was really sleepy and closing his eyes, so they couldn’t see the difference. The next morning, we noticed he wasn’t moving his right leg or right arm at all so back to Alder Hey we went.
He had MRI scan and found that he has two cavernomas. One of them is in a really dangerous place on the central brain stem which had bled badly into the left side of his brain causing him to have a stroke and lose all movement on the right side of his body. It is quite a large cavernoma.
I couldn’t fully take in what was happening. Just a few days before this happened we were on holiday and he was crawling around the caravan, pulling himself up onto things… and then out of nowhere within a few days he couldn’t even sit up without support.
We spent two weeks in hospital so they could keep an eye on him and do CT scans and MRI scans to check for the swelling to go down on his brain. The area that he been bleeding on his brain had swollen so much that they were worried it would lead to him having hydrocephalus.
While he was in hospital the cavernoma bled again. Luckily he was improving steadily so eventually they let us go home. He is now 13 months and has got full use of his right leg and arm apart from his right hand. He can just about grab things with his right hand but will straight away use his left hand to take it out of his right hand. It’s almost like he doesn’t fully understand it is his hand.
He has hydrotherapy every week and physiotherapy every two weeks and is now back crawling and pulling himself up onto the couch.
The neurosurgeno has referred to the cavernoma as a ‘ticking time bomb’ and said it needs to be removed. The surgery will take place in the summer – I am terrified for him to have surgery but I know it has to be done. The other cavernoma has also been bleeding so that needs to be removed once he has recovered from the first surgery.
This really is every mum’s worst nightmare but I know both my boys are so strong and we can get through this as a family. Alder Hey is such an amazing hospital so we know we are were in good hands.