The story of Charlotte
A cavernoma is a capillary that is particularly bad at doing its job, and it looks like a raspberry or popcorn on an MRI scan. It can leak blood into the surrounding tissue and can occur throughout the body usually with very little issues. Even when they occur in your brain they often cause little trouble, with many people having a ‘raspberry’ in there that behaves itself for their entire life. There is a genetic version that is the rare disease and people with the genetic mutation often have multiple, even hundreds of cavernomas throughout their brain and spinal cord. It is extremely rare for cavernomas to bleed. However, I have had the luck/joy of having my brainstem cavernoma bleed 3 times.
I had my first symptoms of numbness in the left side of my face at the end of 2018. A month of this and I eventually see my GP who sends me off to A&E. After the CT showed nothing obvious, I went on my month-long trip to the US. I came back to an MRI and my first neurology appointment. When the neurologist told me there was a reason for the symptoms I was delighted. I wasn’t crazy or imaging things up because of stress! I was told they weren’t exactly sure what it was but it was likely a venous malformation. Another scan was organised, and a referral sent to the neurosurgeon.
I met my neurologist again in March and told to not worry, it was probably a cavernoma, but the surgeon could answer more questions in May. However before I could get to that appointment in April, I began to feel dizzy, nauseous and had trouble walking straight. I had the worst headache I had ever had and I ended up back in A&E. Eventually a scan was done that showed I was having a bleed. I spent a miserable Easter weekend curled up in bed, sleeping and trying not to puke. I was eventually started on steroids and slowly got better. I spent a total of 4 weeks there before being moved to a rehabilitation hospital for 5 weeks of learning my balance again, readjusting to my constant nausea and recovering. I met my surgeon who told me that because my cavernoma was on my brainstem he would only ever consider surgery to remove it if I had had multiple bleeds in a year that had left me pretty badly off. I managed to sit my final exams over the summer and graduated college with my friends in September.
I went back to work and had multiple check ups and just got back to life. Shortly after Christmas I began to feel unwell again and I went to my GP. The GP managed to get in contact with my neurologist. I was sent up to hospital to get a scan and it showed I was having another bleed. It was only 8 months after the previous one. This time I was moved up to the neurosurgical hospital in Dublin where after multiple scans and tests, it was confirmed that I had a cavernoma and that now would be the best time remove it, as the next bleed may be much more severe and 3 bleeds in a year was a lot. Surgery was not an easy decision as I could have been left with severe side effects such as losing the ability to swallow. I had surgery January 30th 2020, I was kept in a medical coma overnight and I began to wake up the next day. I then spent the next 4 days in the ICU and even took my first steps again there. I had an incredible surgeon who managed to remove my entire cavernoma. I was able to swallow and move my facial muscles after surgery but I was left with nerve pain on the whole right side of my body, double vision, weakness and a loss of fine motor skills on my right side and having to learn to balance all over again.
I was moved back to my original hospital and spent 3 weeks there recovering before going to the rehab hospital. There I spent 3 more weeks improving my balance, practising fine motor skills and strengthening my right side. I then got to go home early, courtesy of covid and I spent the rest of the summer recovering! My double vision gradually went away and most of my symptoms improved hugely. I got back horse riding, swimming, hiking and was accepted and began my dream masters degree in September.
I don’t regret choosing to have surgery, although if things had worked out differently who’s to say I would feel the same. As unfortunate as the whole situation was, it was amazing to get to know so many different people, including the incredible people who looked after me at the different hospitals. I learnt how lucky I am to have as many friends and family who visited me while I was in the hospital and their visits made each stay that much more bearable. It was also brilliant to be able to talk to others who had caveromas and discover a whole community! I got to meet people both in person at a Cavernoma Ireland meetup in December 2019 and virtually with CAUK since the pandemic began. These virtual meetups have been an absolute joy to attend, whether they discussed the science behind cavernomas, patient experiences or were just a tea and chat. The entire community is a wonderful support to have, to be able to chat to them, ask questions if you’re worried and find out all about cavernomas.
Thank you so much for reading about my journey with cavernomas!