I am sure when people are told by an eminent neurosurgeon that they have a tricky brain tumour which they haven't seen many of in their 20+ years of practice, they'd be worried. And so you should be.
But I felt a little that I had been down this road before. When a disc in my spine decided to give me massive pain problems, back in 2010. I heard a similar thing from the first consultant I saw. But I didn't know the system then or my rights. I stayed with him treating me, even though I didn't like or trust him. I endured an epidural (here) , that I was told would relieve my symptoms. But it didn't work. He kept assuring me, give it time it will. It didn't. I disliked him so much I sought a second opinion. I loved this Doctor, but he said mine was a tricky case and that the first man was the better man for the job. But I could tell the first doctor was nervous about my case, and he said he was happy to try surgery. There was no way he was going to have a try with me.
So I did lots of research. Talked to lots of fellow sufferers at my Pilates rehab classes, and found an amazing article ( here ) in the Times about the 10 best spine surgeons in the UK. One stood out, and I had heard his name mentioned before. So I asked to be referred to him, and paid for it myself. This time it was all different ( here ). He asked to see my MRI before I went in the room. When I entered obviously in pain and dragging my leg, whilst walking with a stick. I sat down with him immediately to tell me I had no option but extreme surgery. He went on to tell me I needed a ALIF, which I had never heard of before. So it was booked that day, and I had the surgery in 2011. It transformed my hell of a life, back to almost what it used to be.
So I knew this time after my brain tumour diagnosis, maybe watching and waiting and doing nothing in the mean time wasn't an option for me. I immediately did lots of research and talked to the charity Brainstrust to find who would be the best person for me to see. The problem with my tumour is it is VERY rare. It's not situated in the brain. Mine is under the brain and on the brainstem. So I found out I needed a different type of neurosurgeon. I needed a skull based surgeon. My initial diagnosis was made by a very eminent skull based surgeon and he actually weirdly specialises in the region my tumour was in. Plus I found out that brain tumours are regarded the same as cancers and treated by multi-disciplinary teams ( MDT ), which means your cases are discussed by a whole team of professionals. As a group they make the decisions. My case had been discussed at Addenbrookes which is a very highly, regarded place to have brain surgery.
But I had been told, by a few people to try and see a neurosurgeon who worked at NHNN Queens Square, London. It is considered one of the best hospitals in the World. So this is where I chose my next man for the job. A Mr Robert Bradford. I went to see him at the Wellington at the very place I had my spine surgery. In fact I saw him on the same ward I had been on.
He was much shorter, than I thought he was going to be. I thought to myself it wasn't a good idea to bring this up, with the man who might be operating on my brain. He took a look at my MRI and then at me. He said he couldn't believe how calm I was, and I was to be commended for my altitude. He said my tumour was one, that if he was to operate, it would give him sleepless nights. It would seem he too thought I was up a shit creak, without a paddle. I had 5 pages of questions to ask him.
But suddenly they didn't seem worth asking and my ability to spell even the simplest words, like approach, went out the window. He told me any surgery was going to be very tricky and that an approach from the side of my head would have to be made, which brings with it lots of dangers. He was at such a loss what to tell me, that he asked could he take my MRI scan and discuss it with all the MDT at Queens Square.
This is what he did and he rang me the next week with the teams opinion. A Mr David Choi said he thought he could operate to debaulk my tumour. My tumour can’t be removed in it’s entirety. Due to it’s position and complications of having an artery to the brain encased in it.
So back up to London I went, to see Mr Choi at The NHNN, Queens Sq.. In fact I am sat here trying to finish this blog post, because I am going back up to the hospital for the results of some scans I had there last week.
It was a bit of a shock when I went for my consultation to find out I failed some of the reflex tests. This showed that the paralysis that goes with my tumour must have started. So I was told I had to have surgery sooner than later, before it became to late. The paralysis is irreversible, so we have to act now.
So I am sat here packed to go on a once in a lifetime trip to Cambodia, Vietnam and Laos tomorrow. I will return on a Friday and go into hospital on the Tuesday. It has all happened so quickly, so it is a bit of a shock, to say the least. I just have to put my trust into the Neurosurgeon and hope I come around from the operation as intact as possible. My life has been changed forever. The tumour is likely to grow back and I could be looking at more surgery in the next 5 – 10 years. Depending on how much Mr Choi can remove from my tumour, will depend on the next step. It looks like I will be sent for radiotherapy, to radiate the tumour. I will have to take that step and its consequences when the time comes. Radiation brings with it just as challenging problems after treatment.
So I am enjoying all my long hair whilst I can. It will be gone soon. Just as I will be getting used to it having a shaved panel, I will have to embark on radiation and I will lose some of my hair maybe forever.