Minis and songs

I have had one or two what I would call 'mini-seizures'. These are ones that are presaged by one or two clues, or auras as they're known in the trade, and then - well, I don't know what actually happens during the fit itself, but whatever it is I don't seem to suffer so much afterwards so I can only assume that I don't go into heavy spasm, nor do I wet myself or bite my tongue - which is nice. All that happens is that I feel very drained afterwards. Oh and I puke or just retch - a lot. Luckily this has not happened outside home although I did get the early signs at work the other day but managed to get home in time.

I also had another MRI scan 2 weeks ago and I was pleased to hear that the tumour/glioma hadn't grown. The neurosurgeon's PC seemed to be playing up which meant that he wasn't able to see the images properly and I ended up doing a bit of PC support but because he didn't have the proper viewer on his machine he had to look at thumbnails which looked too small to me to be of any use, but he seemed to think they were. The appointment also seemed to be very short. I told this to my neurologist when I had my next meeting with him and he said that this was good. If there was any bad news I would have been there a lot longer.

My neurologist is a little worried that I'm having these mini-seizures as the drug I'm taking (Lamotrigine or Lamictal) should have stopped them entirely. So he's sent me for a blood test to find out what level of the drug is in my bloodstream. He thinks I may have to double the current dose of 250mg twice a day. Unfortunately I've lost the form for the blood test so I'm going to have to ask for another one.

Now - the bit about the songs. When you go for an MRI scan you are told that it's a good idea to bring a music CD with you - preferably something loud because the MRI machine is so noisy. My previous scans were in a local private hospital, but this one was in the Cromwell, in London. In the previous machine, as you lay down they put a pair of headphones on you. In the Cromwell they don't. And that was the problem. Because I had decided to bring an album called "Fitness to Practice" by a group called "Amateur Transplants". The songs, which mainly have a medical orientation to them, are not in the best of taste and are quite sweary. They were made (in)famous by "The London Underground Song" - well, famous to anyone who uses the London Tube. Go here (http://www.backingblair.co.uk/london_underground/) to hear it.

Anyway, other songs cover things like menstruation, Downs Syndrome, drugs and other such things. So, as the speakers blare out all this stuff - and the radiologists are all female - I can't do a thing because my head's strapped to the bed that slides in and out of the MRI scanner, cringing inwardly.

Towards the end of the sequence of scans they bring you out of the machine so that they can inject dye into your arm for some more shots to get a contrast. So - out I come and I quickly catch a glimpse of the radiologist who's going to give me the jab and then quickly shut my eyes again (I always keep my eyes shut - it's the claustrophobia thing again). And then I apologise profusely and explain that I didn't know it would be on speakers otherwise I would have chosen something different. She says not to worry.

Anyway, the scans eventually finish and I'm released from the machine. Once again I apologise to all and sundry. Especially about the periods song. They laugh and say that they thought the album was really funny - that they haven't had so much fun doing a scan before and that at least one of them was going to order a copy. "I loved the one about periods," said one of them, "I'm going to play it to my husband!" So all was okay in the end. I have my next scan in 3 months so I'll see if I get the same people. I don't know what I'll bring then...

I told the neurologist about this when I saw him. He told me that that was what radiologists were like...

I've started thinking - 11/08/07

As I put in a previous post, the Internet - or indeed books - may not be your best friends. I did a bit more research and found that there are roughly 4 types of glioma. I won't bother listing them here, but none of them makes pleasant reading. So much so that I've now written to my neurologist asking a question that for some reason didn't occur to me before:

Is my life expectancy affected significantly by the presence of this glioma? Read the research and I'll be lucky to last more than 10 years. However, as I've said before, my glioma is low-grade and so these figures may not be relevant. On the other hand, some of the articles I've read do refer to low-grade gliomas too, although it's not clear whether the life expectancy figures refer to those too.

Typically for me, the type of glioma I have is very rare and so there are few statistics to work from. So nobody really knows for sure. I guess we'll just have to keep an eye on the MRI scans...

Once again, however, I feel perfectly fine and positive about things.

Neurosurgeon appointment - 08/08/07

This was to get a second opinion with regards to my glioma and also to discuss the options of removing it. The Neurosurgeon was a very pleasant chap and easy to get on with. I brought a copy of the MRI scans on CD as he was not provided with a copy. He had a quick look and spotted the glioma (tumour) very quickly (although my neurologist no doubt had supplied him with some clues). It turns out that it is about 2cms long and is, in the field of neurosurgery, considered to be relatively small. It is also in the right temporal lobe, just touching the right hippocampus. This surgeon does use the "Gamma Knife" which is a highly accurate and non-invasive way of zapping cancerous cells. Unfortunately, it is not appropriate for gliomas.

So he explains that I have three options: (a) do nothing and keep monitoring it. This is probably most appropriate seeing as it's low-grade and therefore relatively benign at the moment, (b) go for radiation treatment, which apparently you can only have once in your life (that's the series of treatment, not one radiation zap), or, (c) have it excised by surgery.

I've gone for (a). Why? Well, at the moment, it's not doing anything and the Lamotrigine seems to be doing its trick as far as stopping me from having seizures go. Option (b) is not attractive, especially as it can lead to hair loss, vomiting and all sorts of other unpleasant side effects. Also, as I said, you can only have it done once, so I'd rather wait until it's really necessary. Option (c) is almost out of the question. Because my tumour is quite deep within my brain, and because it's so close to the hippocampus, my neurosurgeon is worried that surgery could affect surrounding regions which could lead to severe short-term memory loss or, even, loss of use of one or more limbs. So that's a big no-no. It's also rather close to my amygdala - and damage to that is something I don't want to think about.

Next neurologist appointment - 11/07/07

This is after my three seizures in a row, and my second MRI scan. I'm a little worried because I don't know what he might find - i.e. what might have changed in my brain since the first one. In other words, had the multiple seizures affected the glioma at all?

Well, the good news was, no it hadn't. The glioma was still the same size. The other news, however, was that he felt now that I should consider having it removed (he had previously felt that it should not be touched). He had decided this after reading a recent article in "Neurology" - apparently the trade magazine, as it were, for brain people. So I've been referred to a neurosurgeon for his opinion and for me to discuss everything with him.

The Internet isn't always your friend - 24/05/07

Sometimes you shouldn't investigate stuff. I've spent some time today Googling about gliomas. It doesn't make pleasant reading. However, all the nasty stuff seems to do with high-grade gliomas as opposed to my low-grade one. Even so, it's raised more questions than answers. I've certainly got some things to ask my neurologist when I see him next.