I was diagnosed with a cavernoma in my right medial temporal lobe following an MRI scan, as a Healthy Volunteer, for a research study into tinnitus in March 2014. As a research nurse myself, I volunteered for the study to give myself a brain MOT so to speak. I was a little concerned about my short term memory, concentration levels at work and also because I had experienced some weird deja vu episodes associated with nausea and headaches in the summer of 2013. I had about half a dozen of these funny episodes mostly at work and foolishly enough chose to ignore them and not see my GP. They then seem to stop.
I found out about the cavernoma in June 2014 after my research MRI scan was referred to the Walton Centre in Liverpool for review! I have since had 3 further MRI scans. The first, confirmed that my cavernoma had bled previously. My hospital consultant discussed various options with me, giving me time to think things over and weigh up the risks versus benefit of surgery or adopting a “wait and see approach”. As a nurse, I find a little knowledge can be frightening! I was finding it hard to come to terms with my diagnosis and my worst fear was to have a more significant form of seizure. Initially, I felt very strongly against even considering any form of brain surgery but now I am not so sure especially if at my re-scans the cavernoma has increased in size. I feel this diagnosis took over everything in my life at the time and only now returning to somewhat of a normal life.
Thankfully, my latest scans showed no further episodes of bleeding or growth in the Cavernoma, however, I was concerned that I was experiencing more weird episodes and this was not being dealt with. I was referred to a Neurologist, who was able to diagnose these episodes on the basis of my description, as simple partial seizures which were very typical of Temporal Lobe Epilepsy. I also agreed to take part in the SANAD 11 study looking at epilepsy treatments. I have recently started Keppra 500mg twice daily which I am getting used to slowly.
The CAUK website was the first thing I found when I googled “Cavernoma.” Even as an experienced nurse, I had no idea what this was and neither did my GP. I have found the CAUK website really useful and informative. The staff involved in CAUK are friendly, supportive and helpful and I feel I know these people well despite not even meeting them. I regularly use the closed Facebook page to ask questions and try and help answer other members questions if I can or even just offer support in any way possible. It’s nice to know that I am not alone and there are others out there in a similar position to myself and I class these people as my “Cav friends and family”.
“I have become a volunteer for CAUK as I feel I am able to offer my time and hopefully share some of my knowledge and experience as a research nurse to the benefit of CAUK and its members. I like to get involved especially in something that is close to my heart (or brain)”