The Importance of a second opinion.

 

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.

The big polo mint - MRI scanner

It's funny what goes through your head when your stuck for hours on end in a tube with your head clamped down.

My immediate pondering are how much bloody longer. I wasn't even expecting an MRI on the day I went for my initial private consultation . I had chosen my consultant from a newspaper article about the top 10 spine surgeons in the UK.

That was how I had found the amazing Mr Lester Wilson for my previous spine surgery. This time I was looking for a neck specialist. I found one who was in the next County over, so a bit of a trek but nothing that wasn't doable. He gave me some weird tests, which I had to be undressed for. Lucky I had put on sexy black underwear just in case we had to get to know each other intimately. 

It turns out he was thinking, not how sexy I looked in my big knickers, but what was this women doing here wasting his time with no symptoms but a stiff neck. My acute pain from my trip to Colorado had disappeared as quickly as it had came by this time. But he went through the motions, hell I was paying him a lot, for him to tell me I was just getting old. He said he was off on holiday the next day ( he's always on holiday ! I'm now waiting again for him to return from a fortnights holiday ) that I should book an MRI and come back for the results.

The MRI people said they had an opening I could have in an hours time, was I prepared to sit and wait? By this point I was starving. I hadn't had any lunch. So I had noticed all the other normal people helping themselves to hot drinks from a machine. I only drink tea at gun point or if I have a scone with clotted cream in front of me. I checked out the vending machine next to it. It was full of posh looking sandwiches. Not only do I not drink hot drinks, I don't eat sandwiches either. Yep, I'm a fussy fart nightmare. But there in the machine were some biscuits. I stood for what seemed like hours choosing which ones would fill me up the most for 30p. Yep, I'm tight as well as fussy. Then you needed a Masters Degree to work the bloody thing. I pretended to those around me that I knew what I was doing. I can't describe my excitement when it turned out you got two packets of biscuits. Bourbons and custard creams ! I found it funny that everything on offer was so much cheaper than you would get in a NHS hospital vending machine. It that age old thing, of when your rich, you just can't spend your money !

I settled down for the hour wait, dunking my biscuits slowly. I know I was in a private hospital where I'm supposed to be posh, but I didn't care I was starving Marvin. I flicked through some posh peoples magazines, choosing which multi million house I would buy with my imaginary £10 million. The time pretty much flew. 

Of I then popped for my MRI. I've had some before, so I knew about the road works noise around your head. The tube never ceases to amaze me, how confined it is. It always starts me thinking how they would fit a fat person in it. Not only can't you be fat, you can't have an MRI with piercings or a recent tattoo. That in my opinion, must rule out about 50% of the population.

The nurse said I didn't have to strip off into one of those arse baring gowns. I just needed to take off my jewellery. You can't go in the MRI room with anything metal. I suddenly thought about the metal under wiring in my gigantic boulder holder. She went and checked if I had to remove it, which I did. I don't want to imagine the consequences of my uplifted tits, being in a massive magnet. So I sat waiting, with my tits around my belly. 

The man before me came out of the MRI. I was laughing with him about what I'd heard the radiologist saying to him during his scan. It turned out he had fallen asleep. Only a bloody man, could do that whilst the sound of roadworks are going on around your head. Really I was chatting to him, to distract him from my pendulous breasts.

In I went. Little did I know I was going to be in it for hours ! I settled down and was thinking about the fillet steak I was cooking for tea. When it was finished, I was told how lucky I was that a consultant radiologist who happened to be making a visit to the scanner, thought it a good idea I be given a contrast brain scan. She was trying to make excuses to why this was a normal everyday occurrence. The fact that I had banged my head, and that the brain and neck are connected. Hang on , I never banged my head ! So I smelled a rat, but to make her feel better I never let on. So they kept me in the tube, but added a cannula for good measure this time. I was to sign my consent when I wasn't so incapacitated.

It's lucky I don't mind hospitals and don't freak out. The nurse said this time I wasn't even allowed to flinch. I had to be perfectly still at all times, even when she was injecting the contrast dye in. I've since found out the dye can make some people ill, so I was very lucky. To ensure no movement she added an American footballers mask. My head and face was now clamped down and she recommended I keep my eyes shut at all times. In the scanner tube I went again. It's very hard to breathe and be motionless. The more I tried not to breathe heavy the more I did. This scan was different from the off. Each scan was much longer, some of them as long as 6 minutes. My thoughts were turning to the fact there was no way when I had the head and neck pain I could have laid down for this long. Especially in the position I was in. I have been avoiding that position as it was prone to give me migraines. Even with my previous spine problem, I couldn't have laid on my back for that amount of time.

I then realised this wasn't normal and that they must have spotted something out of the ordinary. I have to get prior permission for everything from my insurance company and this obviously wasn't cheap. Someone had made the decision it was imperative without asking my consultant or BUPA.

I took to thinking about what I would do if I was told I didn't have long to live. My first thought was a pyramid of profiteroles from Tescos. I decided I would eat with abandonment anything I desired, and whenever I desired it. And they came first to mind.  I decided there was nothing I wanted to buy, I already had every material thing I'd ever wanted. I had a lovely big house, so that box was ticked. Travel came next to mind. Apart from my trip to Asia later in the year, I didn't have too many more bucket list places left to go. ( at this point I didn't think about the consequences of what I had, on my holiday insurance. At present it looks like I will never be able to return to the States, which makes me sad ) I was happy to think about my family being without me. My children have grow in to lovely adults and have great loving partners to fall upon. They are adults going out into the world, who don't need me so much. I have done my work. 

Meanwhile I am still in the tube and the tea and caffeine has gone through me. I am getting more and more desperate to wee. It was getting to a point I was going to have to say something, after each time I was being told the next scan of my brain was going to last six minutes. They were never ending.

At one point I thought it was the end, but it was only the half way point and I was being injected with contrast dye. It finally came to an end and they were trying to be kind to me, to not unduly worry me. I rushed to the loo and could relax. At last it was over and I could go home. But oh no, I then found out I had to sit there for 20 minutes in case I had a reaction. 

Bless the nurse, she sat chatting to me the entire time. I was telling her I wanted to get home to cook some fillet steak. My son was home for a visit, from a year in Dubai. He was going out and needed to eat before a certain time. I had spent a lot on the steak, as it was a special meal. I had a delicious dinner planned, made up of all our favourite accompaniments. There was no way that fillet steak wasn't being eaten. It'd ad cost me a small mortgage !

I finally left the hospital 5 hours after entering it !!!! 5 hours ........... It was a different day outside. I'd gone in when it was grey and raining and came out to tropical weather.

It looks like MRIs and me are going to be in each others lives forever now. Next time I'll have that pyramid of profiteroles waiting for me when I get home.

PS I sneaked my camera out for a photo whilst I was waiting.

Other things on my mind.

Hi, long time no chat. 

I have a major excuse why I haven't be blogging. I have a brain tumour !!!

 Yep, you read that right. 

It was a shock to me as well.

 But really I am just using it as an excuse to you for my non blog writing. Hell, I was only diagnosed with it last Tuesday, so that's a crap excuse. But I've been finding having a brain tumour is great for getting out of things or blaming things on. My daughter said it's been great at work for people easing the pressure of her and giving her sympathetic looks and hugs. Hell, I wish I had known last month when Bristish Airways decided it was a good idea to move me out of my pre paid for window seat, into the crap seat in the middle. I was REALLY pissed off, when the "child" (16yrs +) was given my seat. Even more so when I saw her bloody put down the blind as soon as we were in the air. Why did she need my window seat ? Now if only I had known about "Bert " at the time. My pleading for a window seat, which fell on deaf ears might have had more oomph behind it.

I would have said I NEEDED the seat to stop my anxiety of flying. I might even have said, that it would be on her head, if as a result I had a serious seizure mid-air. Maybe an exaggeration by me, I've never even had a seizure, but she wouldn't have known that. Ha Ha. Who knows she might have found me a comfy seat in First Class.

See, "Bert" might come in handy.

Bert is the name I decided to give my tumour. I instantly thought of Gilbert the grape. God knows why as my tumour is the size of a gobstopper. Hubby asked the consultant that question. " Small then " said hubby. Obviously Hubby never had the gobstoppers I  bought in my youth. I think it was all just a ruse by the consultant to stop me knowing the truth. He said he didn't know how to use the measuring device on the MRI pictures. This from a doctor who is named as one of the top 10 back neurologists in the UK. Mmmmm doesn't ring true to me.

Shortening it to Bert, sounded short and sweet. So it looks like I will be taking my stowaway with me, everywhere now. Can't say it feels the same as being pregnant, and having another being with you all the time. Bert might even cause me some problems. The DVLA need to know that I won't be the only one driving a car from now on. He didn't even take a driving test, so he could be a devil on the road. Hopefully he is just a back seat driver.

Oh and how clever is the title of this blog post. I knicked it from another brain tumour blogger.