I was first diagnosed with a Pontine Cavernoma, May Bank Holiday weekend back in 2008 (aged 23).
Previous to the diagnosis, I had been very stressed and had just completed my degree, I was also working three jobs.
I had experienced symptoms for around five days or so prior to my diagnosis, ranging from fatigue, dizziness, back ache, numbness in my left side of the body and right side of the face. My temperature perception had changed also.
I had been to see my GP who said I may have Labrynthitis? I then went to the A&E at Royal Blackburn Hospital the following day as my symptoms were becoming more prominent. I was told that I may have an inner ear infection and to put olive oil in my ear and take paracetamol? The next day, I went back to A&E again and was almost sent home – yet again. My eye and mouth had drooped to one sider and was admitted for an MRI scan which later found the cause of the problems. I was in the Royal Preston hospital for around 2 weeks and it took me a further 12 week to recover.
I was referred to Sheffield Hallam (Sept 2008) to see if I was a suitable candidate for Gamma Knife Surgery. I was, but declined any treatment and stuck by the wait and see approach. I continued to have annual MRI scans for the next four years.
Following my annual MRI scans, my lesion had increased in size and I was then re-referred back to Sheffield for the GK treatment. I also found out that I have had a couple of smaller bleeds too between my last scan which i was unaware of? I had the GK treatment in October 2012 at the BMI Thornbury Hospital.
January 2013, just as I was about to take a secondment to a different team within the NHS, I had another big bleed – right-side cerebellar peduncle bleed in the Pons. This bleed was the worst and I was off work until the end of April. I had a lot more symptoms this time too and it took over two years to feel somewhat ‘normal’.
I still have some numbness/altered sensation in my left leg but everything else has pretty much recovered physically. I do suffer with health anxiety but try and manage this the best I can. I work full time and drive too which I am grateful for and glad that wasn’t taken away from me.
I changed neurosurgeon in 2013 to Mr. Neil Kitchen at Queen Square due to him being ‘the best’ with regards to understanding and management of my condition. I was discharged from him January 2015 and no longer need any more scans unless I have any symptoms again – hopefully not 🙂
In April 2010, I participated in a New Beetle rally, driving from Lands End to John O’Groats over 5 days, raising around £800 for CAUK.