Sunday, 4 January 2015
Friday, 3 January 2014
Wednesday, 1 January 2014
Tuesday, 19 November 2013
Tuesday, 29 October 2013
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.
Sunday, 15 September 2013
Sunday, 25 August 2013
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
Thursday, 22 August 2013