My name is Jake Mellor, I am 31 years old and had a right frontal lobe symptomatic cavernoma. Here is my cavernoma story….
I had a seizure on the 24th of September whilst I was getting into bed to watch TV. My partner found me on the floor with blood on my face (I had bitten the inside of my mouth), I was sweating, very confused and couldn’t walk or talk properly. The next day I took my blood pressure which was extremely low, and I generally felt unwell. I originally thought it was due to stress and tiredness with having my own carpentry business, but I couldn’t shake it off so on Monday the 26th of September I ended up in hospital at A&E.
I was admitted to a ward at my local hospital where a number of tests were carried out. I had a CT scan which showed a shadow on my brain and was sent for a further MRI scan. The results of the MRI scan came back and advised me that I had a possible brain tumour or cavernoma on the front right of my brain. I was released from hospital on the 29th of September and was given Levetiracetam tablets to control my seizures, with further scans and investigation pending as my case was referred to neuro specialists at the Queen Elizabeth (“QE”) hospital in Birmingham. A few days after returning home, I ended up having a severe panic attack which required my partner to have to call an ambulance. From this episode I was then put on another tablet to control seizures, called Epilim Chrono, which has worked really well for me.
A big thing for me was constantly living with knowing I had something on my brain, I could never shake it off. I was also experiencing strange symptoms all of a sudden, especially around my right eye which made day to day life a bit of a pain! On the outside I looked great, the epilim chrono made me gain weight so I looked healthy but, on the inside, I didn’t feel well and it was frustrating as people couldn’t see what I was going through. Another tough thing for me was not being able to drive and, as I am a carpenter, I was told to not work at heights or operate sharp machinery, which made work quite difficult too.
A month or so after being released from hospital I had a follow up consultation with the neurosurgeon at the QE. It was quite frustrating as I was hoping for answers on exactly what it was they found in my brain but instead I was told to have a full body scan and a further brain scan 3 months from the initial MRI and an EEG. I was told that this was the best course of action as taking a biopsy could be dangerous. I had these various test and scans in December 2022 and at my next appointment on 30 January 2023 it was confirmed that the ‘thing’ in my brain was a cavernoma, the EEG and the full body scan were clear. I was simply sent away on a “watch and wait” basis – I must say I wasn’t really given much support and the information around cavernomas was quite limited.
In this time, I had also suffered another seizure and possibly seizures in my sleep. So, I decided to get a second opinion and found a cavernoma specialist privately in London, Patrick Grover. Patrick has been great and was really knowledgeable about cavernomas. Patrick advised that the MRIs in September and December showed that the cavernoma had bled.
He also explained that the symptoms I was getting were probably because the cavernoma looked to be pressing on the optic nerve to my right eye. Given my age, where the cavernoma was and the size of my cavernoma (around 4cm on the frontal lobe), gamma knife radio surgery was not an option and it was recommended that my cavernoma should be removed by way of a craniotomy. Although I felt like I had more answers in terms of what I was experiencing and what a cavernoma was etc. the thought of having brain surgery was really scary especially as I was expecting a baby in just a couple of months and have a 2 year old already!
I decided that I just needed this out of the way so I booked in to have the surgery. I had successful surgery on the 24th of March and it seems as though the whole cavernoma was removed with no damage to surrounding arteries or to my right eye optic nerve. In terms of the surgery, I was expecting a lot worse, the care given to me was amazing. Luckily, I had my surgery whilst asleep, so I had no idea what was happening. When I woke from surgery, I surprisingly felt ok but then as the medication started to wear off, I started to feel pain. As the days went on the swelling and bruising started to come out and the pain got worse but could be controlled on pain relief medication. I found that sleeping with my head slightly upwards helped. I am now starting to feel better day by day and hope to make a full recovery.
My advice to anyone who is experiencing having a cavernoma is to talk to people about it, get second opinions and listen to your body – you know when something isn’t right inside even if you look great on the outside. If you are heading for surgery my advice would be to stay calm and positive and trust the professionals. I believe that the stronger minded you are the more chance of a better outcome and recovery.