Of course Bert isn't an official medical name for a brain tumour. I decided within days of being told that I now had an uncertain future, that I would give my tumour a name seeings it looks like Bert is going to be with me for the rest of my life. I have heard of other names brain tumour sufferers have given theirs names as well. Minger is a very popular choice.
My tumour had to go and be a rare one didn't it. Roughly about 2% of meningiomas are found on the brain stem. I have put shouts out over brain tumour forums to find someone with a similar tumour, but as yet I haven't found a single person in the world with one where mine is. So it's a wee bit lonely.
Depending on exactly where in the brain stem a tumour is (and how big it is), surgery may not be possible without destroying a vital area of the brain stem, which would in itself cause death. I have an ever rarer extra complication of my tumour. It has grow large and engulfed the veterbral artery. I have been told that's what makes mine pretty inoperable full stop. It's usually not possible to cure brain stem tumours. Of course the brain stem controls all your vital bodily functions this includes
- heart rate
We have found mine in hopefully the early stages of symptoms. Meningioma benign tumours are normally slow growing and I could have had mine for as long as 20 years. Over this time it has grown and distorted my spinal cord. I have had a long history of migraines which I took, medication for, for years which never really helped. This might have been when the tumour was active and putting pressure on my spinal cord, causing pressure in my brain. I have had a stiff neck, with pain all along the bottom of my skull for years. I fell out of a window when I was young child and I had to wear a surgical collar. So I've always put this discomfort down to that. In 2011 I had to have major surgery on my lumbar spine, and I am still recovering from that. The pain in my neck was, a minor inconvenience compared to what I was experiencing. It was only when I began to suffer severe cervical pain and not be able to flex my neck, whilst I was on holiday, that I sort an appointment with a neurosurgeon to see what was causing my symptoms.
So where am I at now. Well I am slowly getting over the shock. In some ways it was good that my neurosurgeon has been on holiday since he gave me my diagnosis. I have had two weeks, to find out what questions I should be asking. I have been able to do research on the sort of treatment options that I may be able to get with the right neurosurgeon.
As the tumour progresses my symptoms will become more debilitating. They will start with losing feeling in my arms, which then progresses to my legs. My facial nerves will become affected, along with my swallowing. It ends with being a quadriplegic, being unable to breathe unaided. So not a perfect ending. Probably, why my neurosurgeon told me it would have been better for me to have never known I have Bert. He's told me to go and live my life and hope I die from some other cause.
Of course we don't know how my tumour is going to act in the coming future or how long I have with minor symptoms. I am now going to have my tumour watched for growth over the next six months and for the rest of my life.
The Brainstrust have been very helpful, in keeping my spirits up with lovely emails. They have sent me a box full of books and information I need, to make choices for my care. They also believe I am right to seek a second opinion. As my tumour is very rare as it's on the brain stem instead of in the brain, some of the best brain surgeons in the UK won't be of much help to me.
The neurosurgeon I originally saw is one of the best in my tumours area. But I am hoping to see a specialist in brain tumours in the skull base, who operates in the same hospital I had my spine surgery in. They have a specialist brain centre with all the best brain surgeons and equipment in the UK. He also treats tumours with a specialised radiation called Gamma Knife that may be my only hope to try and hold of the symptoms. The Gamma knife might be able to be used to shrink my tumour for a while. The Gamma knife comes with lots of other medical issues that I would have to deal with. It doesn't cure symptoms already being experienced and can in fact make them worse as the tumour often swells after treatment and it takes months before the treatment has any effect. But this may be my only hope, if the tumour is small enough.
See me smiling in this photo in Monument Valley. I was in chronic pain in my head and neck and at my lowest point. I was in fact finding it hard to cope with the pain. But within 24 hours I had it under control. I can do it again