Monday, 30 April 2012

Characteristics of Thyrotropinoma

I found an article on a website which lists the characteristics of thyrotropinoma (a.k.a TSH-oma, a.k.a the kind of pituitary tumour I have, which secretes thyroid-stimulating hormone) as follows:

"Thyrotropin secretion by thyrotropinomas is characterized by increased pulse frequency, delayed diurnal rhythm, enhanced basal secretion, spikiness, and disorderliness."

I deeply resent this. In fact, I am a very orderly person.

Saturday, 28 April 2012

Missing the point?

An interesting article on BBC News today about Frederick Kempster, a 'professional giant' from England who died in 1917. His longjohns are up for sale at auction, and the article looks at his unusual life - but completely fails to mention acromegaly or even the pituitary gland, noting only that Kempster suffered from "uncontrolled growth". This strikes me as a bit of a shame in a news story that has the potential to significantly raise awareness of acromegaly. I'm sure that plenty of people reading these articles who've never heard of the condition are wondering exactly what could cause someone to grow so tall, and it seems a shame that the journalist neglected to look into it.

Thursday, 26 April 2012

Le Meme

Of course, even if you actually have a brain tumor, the NHS will refuse to pay for a rocket to aim at your head. These budget cuts have gone too far.

Top Tips for People About to Have Pituitary Surgery

Before going into hospital for your transsphenoidal pituitary surgery, you will be anxious. You will have questions. Many of them will be answered on legitimate medical sites elsewhere on the internet, so instead of regurgitating the same old advice ("Don't sneeze after surgery or your brain will shoot out of your nose", "Warning: after they've drilled through your head, it may be a little sore"), I have decided I will go down a different route, and write down the more obscure things that I wish I'd known before heading into hospital.

Consequently, I present my top tips for people about to have pituitary surgery:

1. Shave your inside elbows.
"She's gone mad," I hear you cry. "She's raving. It was probably the brain surgery that did it."
In fact, this is an entirely logical step because of all the blood tests you'll undergo after your pituitary surgery; you're basically going to be a human pincushion for a couple of days as the doctors seek to keep a very close watch on various hormone levels. This means that the post-blood-test strip of tape and cotton wool that the phlebotomist sticks over your inside elbow is going to get ripped off repeatedly, and then stuck back on. And then ripped off again, along with much of your arm hair. After the sixth time this happens in one day, you'll be wishing you looked like this.

2. Drink enough.
If this seems obvious to you, then presumably you're a normal person who gets thirsty when you haven't drunk sufficient amounts of water to keep yourself hydrated. However, I am an odd sort of person and I only really get thirsty when it's hot or I've done exercise. If neither of those conditions have been met then I can go for hours and hours without drinking and not even notice; even back when I was a teeny child, my mum would tell me off for not drinking enough.
Compounded with the fact that I don't like water, this was slightly problematic in hospital. Because of the risk of pituitary surgery inducing diabetes insipidus, your fluid balance is monitored carefully and if you're not drinking enough to keep yourself hydrated, they will put you on a drip. This is rubbish. Therefore if you don't like water, keep a supply of tastier drinks at hand. And by "tastier drinks", I mean RIBENA.

3. Always eat the custard first.
Hospital food gets a bad rep. The food at my hospital was pretty tasty really, and there was a good selection. But for some obscure reason the dessert was often served before the main. If you waited for your main meal to rock up before eating, your custard would congeal disconcertingly by the time you got to it.
So remember: you've just had brain surgery. Screw societal norms regarding the "correct" order in which to eat sweet or savory comestibles!

4. Make your visitors play musical chairs.
Again, this may initially seem nonsensical. But I was fortunate enough to have a fair few visitors in hospital (thank you guys! <3), which was lovely. However, for the most part they sat in the same chair on the left-hand side of my bed, and consequently by the end of my stay in hospital I had done my neck in from continually turning my head to the left. It was pretty painful and entirely my own fault. Make them alternate sides.

5. Get wheeled out in a wheelchair.
Because a) you'll be feeling rubbish and won't want to walk, and b) it's fun!

6. Steroids + morphine = surprisingly fun.
After waking up from surgery, initially I felt rubbish. The nurse at hand quickly gave me some morphine. By the time I was properly awake, I was pain-free, wired, and weirdly delighted that the nurse had the same first name as my mum. They took me out of the post-surgical care room and up to the main neurosurgical ward, and about half an hour after I woke up I was already texting various members of my friends and family and talking nineteen to the dozen about how unusually chirpy I felt.

7. Play your "brain surgery" card.
I regret not doing this more, in retrospect. I have no doubt that there are hours of fun to be had in pretending not to recognise household objects, friends, family, political systems and/or branches of philosophy.
I remember speaking to one friend a few weeks after my brain surgery, and I mentioned that I was always forgetting where I'd left my books. She gave me a sorrowful look and whispered, "Is that because of the surgery?"
It was disappointing to have to confess to her that no, I have in fact always been that stupid.

8. Get a free pill slicer. They are awesome.
After pituitary surgery you'll be put on steroid replacement medication in case the neurosurgeon accidentally removed your body's ability to make its own steroid hormone when required. Said pills can be broken into different-sized chunks so you can take, for example, a whole dose in the morning, half a pill at lunch, and the other half in the early afternoon. When I left hospital, I obviously looked too pathetic even to break a tiny pill in two, because they provided me with a pill slicer. You put the pill in, shut the lid, and SHAZAM! A razorblade hidden inside will slice that bad boy in twain.

I managed to lose my pill slicer after a couple of months, and I still haven't quite got over it.

Tuesday, 24 April 2012

Belated: Cushing's Disease Awareness Day

So it turns out that the 8th of April was Cushing's Disease Awareness Day, and I completely missed it. Not least because it was Easter Sunday, i.e. the first day I could eat chocolate again having given it up for Lent. It does seem cruelly ironic that the awareness day for a terrible disease, a key symptom of which is central obesity, should fall on a day that the rest of the world dedicates to filling their faces with fatty treats.*

Anyway, dedicated readers of my blog already know what Cushing's Disease is, but for everyone else: Cushing's Disease is caused by a tumour, known as an adenoma, on the pituitary gland. The tumour produces high levels of adrenocorticotropic hormone (ACTH) which can result in obesity, high sweating, hair loss, hypertension, diabetes, headaches, painful joints, and other not-so-fun symptoms. Treatment is chiefly through surgery and radiotherapy, as Cushing's is difficult to treat with medication.

There's a group of bloggers who suffer from Cushing's Disease who've been doing the "Cushing's Awareness Challenge", blogging on a different topic about their illness for every day of April. You can find out more about the challenge and read some of their blog posts by clicking here.

*Well, I do anyway.

Monday, 23 April 2012

IMFW: Life Imitates Art

So Blogger has changed its layout and everything, which is deeply confusing to a simple soul like me. If I manage to do anything wildly stupid like posting this next April or forgetting to use a title or something, please forgive me. I am easily baffled.

Anyway: back to IMFW! Today's Interesting Medical Fact of the Week is kind of related to two of my previous interesting medical posts, which focused on face transplants. There's an interesting article on the BBC News website about the fact that the University of Lincoln is offering an art course to plastic surgeons and medical students. They work at life drawing, self portraiture and clay modelling, with a focus on the real-life application for these skills: applying them in their surgical work.

It sounds a little bizarre at first, but at second glance it does make sense. The course aims to enhance students' observational skills and their perceptions of their work, emphasizing that they should look at reconstruction from a patient's point of view as well as their own.

Despite its rather trite acronym, the name of the British Association of Aesthetic Plastic Surgeons (BAAPS...) emphasizes the importance of beauty and aesthetic in the work of plastic surgeons, something which is obviously important in purely cosmetic procedures, but equally key in reconstructive work. I know next to nothing about the training of plastic surgeons, but it would certainly be interesting to know whether surgeons who go into this specialty tend to have more of an interest in art compared to those who gravitate towards other specialisms.

A press release from the university emphasizes the historical link between art and medicine, which was far more pronounced centuries ago; it was considered that artists needed an understanding of anatomy in order to recreate the human form on canvas, while medical texts relied upon anatomical drawings produced by artists, who would often attend dissections. Vesalius's seminal work on anatomy, De humani corporis fabrica, written in 1543, incorporated anatomical illustrations from artists working in the studio of Titian. Perhaps now the link between art and medicine link is being strengthened once more.

Sunday, 22 April 2012

Pituitary Network Association PSA

I've just seen this public service announcement from the Pituitary Network Association and thought I'd share.

Although I have to admit, I can't quite get over the strange American pronunciation of "pituitary".

Wednesday, 18 April 2012

Belated Bad Luck

...and, I'm back again. Apologies for my absence, this time I wasn't ill, just busy with work. Last Wednesday I had a whole day of medical bad luck, however, which I propose to tell you about right now. I know, I know. You can hardly contain your excitement.

So, I set off into town, to visit my GP's surgery, to find out whether my new address means that I'm out of their catchment area and consequently would need to find a new doctor. My local GP's would appear to have the world's most illogical catchment area; I used to live a forty-five minute walk away and had no problem staying on their books, but when I moved much closer (a fifteen minute walk away) they warned me that I was "only just" still inside their boundaries. W, I hear you cry, TF.

Anyway, I moved house basically down the road, so I'm still just as close but in a slightly different direction. My new house is nice, by the way. It's painted yellow on the inside, which is cheery, and there is both a gardener and a dishwasher. Decadence, thy name is me. Or moi, probably. I hear Decadence is French.

When I arrived at the doctor's surgery, a bad omen was pinned on the door. No, not a dead raven - a notice that my long term GP, Dr Boris (who I have previously written about here) had left the surgery and was working at another one nearby. Now, Dr Boris isn't so much of a legend that I would weep tears of watery saline solution from my lachrimal glands at his departure, but still, this could be inconvenient.

I went in to the surgery and asked the receptionist if my new address was still in their area. She looked up my postcode on their computer system -

Haha, no.

She looked up the name of my road in a tatty folder which contained an alphabetical list of all the road names in my city. Apparently only people living in a road underlined in yellow highlighter are allowed to register at the surgery and, alas, my new road is not highlighted.

I point out to the receptionist that I live absurdly nearby and need to have a fairly unusual injection once every month and that there are three nurses at this practice who are trained to give them and potentially may be none at another GP's practice. "You have to go register at another GP's," she says.

Ok, fine. I ask the receptionist what other GPs are nearby. She looks at me like I'm insane and responds that she "doesn't know the area".

Fortunately, I asked mainly out of curiosity. I know there is one other GP's in the town centre, which my boyfriend used to be registered at, so I head there to ask about registering.

In the window is a sign "GP's closed 23rd March - 19th April". Ah, the joys of the NHS.

So currently I'm still registered at my old practice (I cunningly told them I "would be moving shortly" because I am a deeply suspicious person by nature) but I have to find a new one. Ho hum!

I have to say, I cannot for the life of me understand having a GP's practice boundary which extends less than a mile to the north and east but several miles to the south. And if you're going to have such a strange and arbitrary boundary, surely keeping a list of other GPs with less mental regulations is only common sense?

Monday, 16 April 2012

IMFW: Facing Up To Your Problems

IMFW retro-post is sneaky. Yes, that's right. I am writing this Interesting Medical Fact of the Week on Wednesday because I'm rubbish,* but I am retroposting it so it looks like it was posted on Monday, because I'm cunning. But I'm telling you about it because I'm honest. Damnit!

Anyway, last week's interesting medical look at face transplants proved pretty popular - let's be honest, face transplants are both amazing and intriguing. And everyone wants to see the pictures. So I figured that I would carry on in the same vein/paranasal sinus, because I am too unimaginative to come up with another good topic at this late hour.

But here is a link to a pretty amazing film clip of Dallas Wiens, the first American man to undergo a full face transplant, one year after surgery. He suffered serious  burns from a high-voltage wire when he was just 23 years old, to the point where his entire face was effectively destroyed; he was blind, with no lips or nose, and he had to be placed in a medically induced come for three months while surgeons attempted to reconstruct what they could. Since the transplant, he has regained some facial sensation, is able to smell, speak and breathe through his new nose. When you see how severely disfigured he was before the transplant, you can appreciate just how incredible the effects of the surgery were.

*And because I was in the office for ten hours straight on Monday and so busy I only just managed to take a ten minute lunch break.

Thursday, 12 April 2012

One Year Post Brain Surgery!

This is just a very quick post in case I don't have the time to write something more extensive today (quite possible, I am super busy!) to say - today is the one year anniversary of my transphennoidal pituitary surgery! A year ago right now, I was waking up in the hospital. At first it was pretty painful but I don't really remember that - I just remember being asked to rate the pain on a scale of 1-10 and spending several moments agonising (literally) about exactly what the range should constitute, then deciding on a five. Which was the right decision, because I got a whole bunch of morphine for my troubles. After that for the most part I didn't need much pain relief beyond paracetemol.

They wheeled me up to the ward after a while and I was outraged not to find my parents waiting for me, so I sent them a demanding text message insisting they come and see me (turns out they were not ever actually told that I had gone for surgery... that's another story) and was generally surprisingly perky for the rest of the evening thanks to a combination of steroids and morphine. Whoop! Also incredibly thirsty.

But anyhow that was a YEAR ago, which really is pretty hard to believe! My pituitary adenoma was significantly diminished after its encounter with my neurosurgeons... and now I'm waiting to find out how it looks one year on.

Tuesday, 10 April 2012

Quick Update

Hello! Here is another short post - I know, I know, I'm a reprobate. Obviously what the internet really needs is another one of my long rambly posts about injections and hand dryers. But the internet will have to wait.

So as I hinted previously, I was sick last Tuesday, having managed to pick up some kind of stomach bug that just made me throw up all the time. Any time I got out of bed, I threw up. So I made the sensible decision to stay there for the day. Admittedly, since childhood I have been notoriously prone to vomiting at the least provocation - car journeys, overexcitement, eating too many of those sweets shaped like flying saucers with sherbet in the middle. When I was about twelve, I went through a phase that lasted a couple of years where I just threw up every time I stayed around a friend's house. There was no apparent cause (I don't know if my parents thought I was just drinking  excessive quantities of alcopops, but in honesty I wasn't). Eventually I grew out of it. But even for me, I think that being sick seven times in eleven hours is some kind of record. I actually managed to pull a muscle in my stomach slightly from it. Nice.

Oh by the way, heads up - if you're grossed out by talk of me being sick, you probably shouldn't have read that last paragraph. Just a warning.

Anyway, the point is that although I was a bit pathetic for a few days given that I hadn't been able to eat or drink on Tuesday, I am now fine! Raring to go, in fact. Except obviously I have to catch up on all the work I didn't get done, and more importantly having given up chocolate for Easter I now have a whole lot of catching up to do on that front as well.

I've not yet heard from the hospital regarding my latest set of blood tests or the MRI I had, but my next appointment with my endocrinologist (well, in theory it's with him. In practice, past experience tells me it could be literally any endocrinologist) is on the 3rd of May so I'm assuming I'll get everything then.

Interestingly, I've realised that now I'm back on the lanreotide injections, which have slowed my heart down again now - there's a bit of a time lag, but after two months' worth of injections it has slowed down significantly even without medication - my heartrate has become an accurate predictor of me getting ill. It's happened before with colds that my heartrate started to go up noticeably about a day or so before I felt the symptoms, and again with this bug I had last week. So next time instead of just being annoyed when my heartrate rises for no apparent reason, I shall run around telling people that I'm psychic and I foresee that I will come down with a cold in the immediate future.... Sweet!

IMFW: Seven Year Itch

I failed in my promise to get an IMFW up yesterday, and for that I apologise profusely! Here is a link to a really interesting article which was published in the New Yorker a couple of years ago, which explores phantom limb syndrome, chronic itching without seeming cause, and more...

Saturday, 7 April 2012

Break in Regular Service

My apologies for the lack of posts this week! I was really ill on Tuesday and have taken a while to recover. I'm currently at my parents' house enjoying the Easter bank holiday and looking forward to my return to eating chocolate tomorrow (I gave it up for Lent). I will try to get an IMFW out on Monday and then hopefully normal service should resume!

Monday, 2 April 2012

IMFW: Face Transplants

Today's Interesting Medical Fact of the Week is all about face transplants! Recently an American man named Richard Lee Norris received what is allegedly the most extensive face transplant ever carried out, in which he received a new jaw, teeth, tongue and nose. The pictures are pretty incredible. After being severely disfigured by a gun accident, Mr Norris had been living as a recluse for fifteen years, wearing a mask whenever he had to leave home - and he had lost his sense of smell completely. That's all changed.

Only the 23rd facial transplant ever carried out, the operation was a gruelling 36 hours long; all Mr Norris' facial tissue from the scalp to the back of the neck was completely replaced. As with every transplant, there is a risk of rejection; recipients of face transplants have to take immunosuppressant drugs for the rest of their life, which increase their risk of cancer and infection. The first Chinese recipient of a partial facial transplant, Li Guoxing, died in 2008 just two years after his transplant, when he either stopped taking his immunosuppressant drugs or failed to take them correctly. There is also the potential psychological issue of patients finding it difficult to adjust to their new face; although such transplants don't give the recipient the face of the donor, nevertheless even after the most successful operation they will never regain their appearance from before their injury.

The world's first face transplant came in 2005 in France, on Isabelle Dinoire, whose face was so badly mauled in a dog attack that she was left unable to speak or eat. Dinoire has had problems with her transplant, including kidney failure and two episodes in which her body tried to reject the transplant. But from the interviews she's given, it seems that she has been happy with the results. The first full facial transplant came in March 2010, when a Spanish man who had accidentally shot himself in the face received a completely new jaw, nose, teeth, cheekbones and skin.

Face transplants can be controversial because some people see them as being done for "cosmetic", rather than purely medical reasons. Yet if you look at the people who have received facial transplants, it's clear that in every case their disfigurement affects their lives in much more than a purely "cosmetic" way. These are people so badly injured that they can no longer eat, drink, or - in some cases - breathe independently. For them, the risk of rejection and of a shortened lifespan due to the immunosuppressant drugs is worth taking in order to have the chance to live a more normal life.

Equally, as the story of Richard Lee Norris shows, even for those who remain independent after injury, the effects of severe facial disfigurement are much more wide-reaching than the purely medical, affecting employment, relationships and simply the ability to leave the house without feeling the need to cover your face. It's difficult for those of us who haven't experienced disfigurement to understand just how significant an impact it can have on people's lives. Obviously, face transplantation is an extreme step and certainly not one which is suitable for most people with serious disfigurement - but it should be available as a last option for those who cannot be treated by other means.

Some doctors have raised concerns over the way these transplants are followed up, suggesting that there should be greater emphasis on psychological analysis of patients, to gain deeper understanding of just how facial transplants affect recipients.

Connie Culp, the first US recipient of a face transplant.
The Guardian has a short history of face transplants here.