Happy National Recovering From Brain Surgery Day!

It's a tricky in-between sort of day today, sandwiched between Pancake Day (yay!) and Valentines Day (yay!). Technically it's Ash Wednesday, the first day of Lent, but that just means you can't do anything fun. And I can't do anything fun anyway (that is actually a lie, I have watched a lot of TV and read a lot of awesome books while recovering). So, I decided: I have co-opted February 13th to be National Recovering From Brain Surgery Day! Hurrah!

Are you recovering from brain surgery? No? Then you should find someone who is and shower them in affection and expensive gifts. Then you should probably leave them for a couple of hours so they can have a nap. But then you can come back and give them more gifts! Because that is the meaning of National Recovering From Brain Surgery Day. Hurrah!

This adorable hedgehog is wearing a hat to celebrate February 13th, as science has proven that people recovering from brain surgery enjoy pictures of cute animals wearing hats.

If you are recovering from brain surgery, then celebrate National Recovering From Brain Surgery Day by demanding attention and love from all those around you. But don't strain yourself. Hey, maybe you should take a nap. Hurrah!

Now for the awareness part: Brain tumours are more common than you might think, especially amongst younger people. Brain and central nervous system tumours are the second most common group of cancers in children in the UK, and they kill more children  and people under the age of 40 than any other type of cancer. Yet brain tumour research receives comparatively little funding; just 1.4% of government spend on cancer research related to brain tumour research in 2011, although the proportion spent on brain tumour research has been rising since 2002.

So! Today be nice to someone who's had brain surgery (whether it was for a tumour or epilepsy or head trauma, or just out of sheer curiosity). If you're feeling generous you could even make a donation to a charity like The Brain Tumour Charity, or get involved with fundraising. But one of the most important things you can do for yourself and your family is just to be aware of the possible symptoms of brain tumours.

Have a lovely February 13th!

IMFW: Headache? Painkiller!

If television advertising has taught me one thing over the past few years, it's that headaches are evil red pulsating blobs inside your head, and that if you have one, you can cure it with NUROFEN and that NUROFEN will heal all your achy ills and NUROFEN PLUS is there for when you have an exceptional amount of pain that needs to be killed, because humans are WEAK and liable to developing red pulsating headblobs at any moment.

I think that advert was for Nurofen, anyway...

If actual real life has taught me anything, it's that you should go to the doctor if you have headaches regularly, and also that being allergic to paracetamol is annoying if you're then put on medication which means you can't take aspirin or ibuprofen.

If the BBC has taught me anything this week, it's that painkillers can actually cause headaches, which I had no idea about. We all know you should be careful not to OD on paracetamol (but did you know that paracetamol is actually the commonest drug overdose in the UK, and accounts for a massive 48% of all poisoning admissions to hospital?), yet in fact even at non-toxic doses painkillers can cause what are known as medication overuse headaches. NICE has recently issued new guidance to health professionals in England and Wales on the subject.

If headaches get worse after a couple of months of regular use of painkillers, it's possible that they have developed into medication overuse headaches, and unfortunately the only cure is to go cold turkey and see if they improve - but at first they'll get worse. Also known as rebound headaches, they can be a serious problem, often occurring in people who already suffer from migraine or other chronic headache conditions, and who may have no idea that they're taking painkillers too frequently.

An Open-Source Cure?

Kudos to my lovely boyfriend for this very interesting link to a website created by an Italian man with brain cancer, who requested copies of his medical files from his hospital  in order to send to other hospitals and doctors for their opinions, only to find that they were in proprietary formats which he could not open on his computer. Being computer savvy, he managed to convert them into open formats so that he can share his information with everyone, online. And he's posted them on his website.

It might sound weird, this idea of posting medical records online, when these are documents that we're used to treating with the utmost confidentiality, but already he has had responses from doctors - and the idea is that everyone is encouraged to use the data to create a cure, whether that's a doctor suggesting treatment, an artist creating artworks, videos, poems... you name it. Other people with similar conditions can send in their own data, if they wish, to be added to the site.

The author of the website had some very interesting thoughts about how the way in which his data is treated parallels the way in which his disease has been treated:

"The data formats which I was "forced" to hack is in a peculiar state of harmony with the common definition of "disease/illness".

The definition of "diseases" is "reserved" to doctors. Often using words which we don't understand and, most important of all, touching only a part of the human condition, which is made from body, but also of spirit and sociality.

The DICOM format is open, yes, but in a very "peculiar" condition of openness: it is like the openness of the words which they use to tell you about your health condition, and with which they descrive and actuate their version of the "cure": you can't understand it, you can't reuse it, you can't combine it with other possibilities. It is thought for "experts" and "professionals" (of one single type), leaving little space for other possibilites for expression and socialization."

It's interesting to consider the possibility that the sacred doctrine of doctor-patient confidentiality may, in some cases, end up mitigating against patients having the ability to take charge of their own healthcare, or seek the widest possible range of medical opinions on their condition. Now that so many hospital systems and even procedures are digitised, there's clearly a balance to be struck between protecting patients' private information, and making it so inacessible that patients are unable to view their own data.

Historically, medical education and knowledge has been very much the preserve of the privileged few, and patients weren't necessarily expected to understand their own conditions. With the rise of the internet, it's so much easier for patients to be informed about their own illness - some might say too easy - and thus it seems terribly ironic that the same medium enabling greater patient choice and freedom should simultaneously be creating new and unwelcome restrictions on their ability to use their own data in whatever way they desire.

Posting your medical records on the internet for all to see may not be everyone's cup of tea. But it should still be an option if that's what you want to do.

Check it out: http://artisopensource.net/cure/

Russell Watson, It's Not All About You

Following my last post about Russell Watson, I felt inspired to find out about some other famous people who have had pituitary adenomas, using the trusty-yet-woefully-incomplete-and-indeed-quite-inaccurate Wikipedia List of Brain Tumour Patients. And I have learned about:

Pío de Jesús Pico

last Governor of California under Mexican rule.

Governor Pico is my absolute favourite discovery. Not just because I love a guy with a sexy beard, not just because of his awesome name, but also because he is a very intriguing case of retrodiagnosis. Pío Pico lived from 1801 to 1894; acromegaly was first identified in 1886 and he was never diagnosed in his lifetime. In 2010, this paper was published suggesting that he suffered from acromegaly. Looking at pictures of him from 1847 to 1858, he progressively exhibits more of the characteristics associated with acromegaly; this picture from 1858 clearly shows a large forehead, big nose and enlarged lips, a hairless face and hairloss from the eyebrows, which could indicate secondary hypothyroidism, and misaligned eyes which could be due to the tumour pressing on cranial nerves. If you look at the article I linked above, there are more photographs which show his huge hands.

But that's not where the interesting ends. The Governor lived well into his nineties - no mean achievement for a Victorian - while the article suggests that around 80% of patients with untreated acromegaly would be expected to die in the first ten years after diagnosis. It seems instead that his pituitary adenoma spontaneously infarcted sometime after 1858; pictures of him as an old man show that his facial features and hands have become much smaller, he has a full beard and his eyebrows have grown back.*

Kevyn Aucoin

American make-up artist and photographer

Another pituitary adenoma and a really sad case. Kevyn Aucoin was a well-known make-up artist and photographer who had worked for Vogue and Revlon, wrote books and appeared on TV. He was diagnosed with acromegaly aged 39, although it's believed he suffered from the condition for some time before it was diagnosed, and the pain of it resulted in an addiction to prescription painkillers. After surgery for his pituitary tumour, his use of painkillers intensified and he died, only a few months later, from liver and kidney failure. You can read about him on his Wikipedia page and this article.

Sun Mingming

7'9" basketball player

You could probably guess from the subtitle that Sun Mingming also has acromegaly (an overrepresented condition in this sample! I guess because the symptoms are so unusual, lazy journalists don't just write "brain tumour" and move on). Pituitary adenomas which secrete growth hormone and develop before puberty result in sufferers becoming very tall; in adulthood it's all about the growth of soft tissues. Sun underwent gamma knife radiosurgery at the age of 23 and is still playing.

James Murphy

Death metal guitarist man

It's been kind of a challenge to discover much about James Murphy and his pituitary macro-adenoma, but in this article he certainly emphasises the fact that it's a benign tumour rather than cancer, and that although it can cause some serious problems and, rarely, death, the prognosis is nowhere near as bad as a cancerous brain tumour. One online forum I bumped across in my researchings was castigating celebrities who fail to make this distinction, so good on him.

From the hints about his ongoing "hormone inhibiting treatment," which on one site is said to be bromocriptine, and the fact that he's not obviously acromegalicious** I'm guessing he has a nasty prolactinoma, but that is just a guess. I'm kind of hoping so, purely because I've found it so hard to get examples of famous pituitary tumourheads who have something other than acromegaly.*** His tumour seems to have been pretty badly located, as they operated basically through his face rather than the nose or mouth, something I hadn't come across before.

***

So there you have it, a brief run down of some famous folk. There are actually quite a few more cases of acromegaly which I came across - people like Andre the Giant, for instance. But that's enough for now.

UPDATE: True to my word, I have written another post about more famous people with pituitary adenomas. I've also written about famous people with Cushing's Disease and the question of whether there are any famous women with acromegaly.
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*Sadly, the article notes that he suffered a lot of abuse and discrimination in his lifetime for his unusual appearance.

**Acromegaly sufferers: you should use this word.

***Acromegalicious folk are obviously awesome, but I'm trying to be balanced here. As for finding anyone famous with a TSHoma like me - it's difficult enough just finding published case studies.