Sunday, 28 July 2013

My latest check-up with endocrinology

So I made it to the hospital on Thursday for my appointment, and it went about as well as I could have hoped for. First stop: getting weighed (58.4kg). Second stop: blood pressure, resting and standing (both totally normal - a good sign as when I'm taking propranolol it's often very slightly low). Third stop: a comfortable chair in the waiting room for an hour.

Just as I was starting to think that I might actually have been forgotten, my endocrinologist swooped in. It was a pretty quick appointment really. My blood tests look good. I had a good response to the synacthen test and can stop taking hydrodortisone (if you don't understand all this medical terminology, in short: that is good!). All my thyroid hormones are solidly in the normal range - including the alpha subunit. The alpha subunit (a.k.a. chorionic gonadotropin alpha) is a protein. People who have TSHomas/thyrotropinomas often have an unusually high level of it in their blood. The normal range of the subunit in blood tests is below 1. When my blood was first tested for the alpha subunit, I think my level was about 13. My most recent test showed it at 0.95 - not only normal, by far the lowest it's ever been for me. Even after my first surgery it was around 5 or so.

So thus far, everything looks good and they don't want to refer me for radiotherapy. I don't particularly want to have radiotherapy, so that is excellent news. My MRI shows scar tissue, but nothing that looks like residual tumour, and my pituitary gland appears to be functioning normally despite two surgeries. Of course, if a few cells or a teeny tiny bit of tumour has been left behind, there's basically no way to tell unless it grows back, so the policy is just to watch and wait.

Next appointment is in six months. I had another round of blood tests and they kept some of my blood on ice for the various studies they do on TSH-secreting pituitary adenomas. I'll have another set of blood tests before the next appointment and see how they change. In the meantime, basically I just keep on keeping on!

Thursday, 25 July 2013

Appointment Time Tombola

Well hello there! Another pause in my updates, but this time a legitimate one - I was on holiday! The lovely boyfriend and I went glamping in Cornwall. We stayed in a yurt, it was pretty epic.

I had an appointment with the endocrinologists last Thursday. That sentence makes it sound so simple - but of course, before I could get to see a doctor I had to first negotiate the administrative no-man's land that encircles my endocrinologists as though they were a small patch of strategically valuable land just south of Ypres. Their administrative systems certainly appear to be about a hundred years old.

On my return from my holiday, I was expecting a letter from the hospital informing me that I had an appointment at the end of July. What I got was a letter from the hospital informing me that I had an appointment at the end of October. As I had just had a full round of blood tests in preparation for the putative end-of-July appointment, this seemed even more stupid than usual.

So, of course, I telephoned them. And discovered that the usual method of getting hold of anyone at the hospital (dial number; doggedly hold onto receiver while it rings 40~ times; hang up and try again later) had been changed to an even more infuriating system, whereby the phone will only ring three times before you are transferred back to an automated message informing you that "This extension does not answer" and requesting that you dial 1 to try again, or 2 to leave a message. After three doses of this eerily robotic speech, I gave up and left a message. Like some kind of naïve idiot.

Obviously I didn't hear back from them, so I called again and again and after dialling 1 so repeatedly that I feared breaking the button, I reached a human. I introduced myself and mentioned that I had left a message. She said "Oh yes, Emer, I have your message right here actually." I said, "Ok, great."

Then there was a long pause.

Eventually she said "So, how can I help you?"

"How about by DEALING WITH THE ISSUE I CLEARLY EXPLAINED IN MY MESSAGE?" was what I did not shout at her, because I am used to this by now and understand that the endocrine admin staff believe that actually responding to messages dilutes the soul.

Anyway, I repeated everything I'd said and she informed me that a number of appointments for July and August had been pushed back to October (no, no-one deigned to explain why), and I could not possibly get another appointment before that date. It took quite a bit of arguing, and pointing out that I was currently taking a medication (hydrocortisone) which was quite possibly medically unnecessary but which I would have to continue to take until I saw an endocrinologist to get the results of my latest synacthen test, to get passed to the booking manager. Then I had to go through it all again but eventually she offered me a cancelled appointment in two days time.

I had intended this post to be about the results of that appointment, but it looks like we'll have to save that joy for another day. I do feel a great sense of post-rant relief however! Phew!

Thursday, 4 July 2013

Six Months post surgery

It's been over six months now since my last bout of brain surgery. Time has certainly flown! The first two months after surgery are pretty weird really - on the one hand, at the time everything seems to go very slowly because a) doing minor things like making a cup of tea are a huge effort, and b) you get pretty bored sitting around but don't have the energy to actually do anything. But in retrospect, time seems to have sped by, because the days of recovery just turn into a vague blur of teacups and low-quality daytime TV.

So how am I doing? I haven't actually really taken the time to sit down and address that question in a blog post for quite a while. This is, happily, probably because the answer is: pretty good! Everyone who knows me is now bored of me going on and on about how much muscle I have put on in the last six months - not least because, as far as outward appearances are concerned, I have not visibly morphed into Arnold(ina) Schwartzenegger. For which I am rightly grateful.

But for years, the high levels of thyroid hormone rushing around my system have been subtly damaging my muscles and impairing my body's ability to produce new muscle. When I had a body density scan last July, the results freaked me out a little - I had a high percentage of body fat - but my endocrinologist explained this was probably due to unusually low muscle rather than high levels of fat. Since recovering from surgery, though, I have gone back to doing the same level of exercise I had been doing previously - several hours of dancing, lots of walking, and I've now started swimming and the odd cycle ride - but the difference is remarkable, because I'm finally actually seeing results from it. Things are becoming noticeably easier than they were even before I was diagnosed. I bought a new bicycle a few weeks ago and then went on a bike ride with my boyfriend, and actually got a bit teary-eyed by the end, because we'd cycled for around an hour and finished with an uphill stretch and I felt.... Totally fine. Even back in my first year of university, three years before I was actually diagnosed, I would have found that quite a push. I always blamed myself and assumed I was just really unfit but it did seem unfair that even when I played badminton regularly, walked lots and cycled, I always seemed to find exercise much harder than everyone else. Now, looking back, I finally know why.

Other positive things include an improvement with my hair - if you've read my blog before, you might remember that my hair has been falling out on and off since I was about 17 - the first symptom of my pituitary tumour. It has definitely improved since surgery. It's quite normal for your hair to fall out a bit for a couple of weeks about three months after surgery, which did happen, but overall I have noticed an improvement. It's falling out less when I wash my hair, and I have lots of short new hairs growing around my hairline (which actually just looks like a hilarious fluffy mess, but I do not care). It's not entirely linear progress - about a week ago I had quite a lot of hair come out in the shower - but it is progress. Of course, the trouble with hair is that it grows slowly, so even if the good progress continues it would still be quite a long time before I see my hair back to normal - and I guess it's probably unlikely it will ever get back to how it was before. I haven't been to a hairdressers in years because I just hate having the focus on my hair, and I've worn a hairband every day since midway through my third year at university (now three years ago - wow!) to hide just how thin and patchy it is. It would be really nice if I could feel confident to go out with my hair down again.

In other news, my heart still goes a little fast now and then but an ECG scan I had a month or two back didn't show anything strange. I'm supposed to have been referred for a 24 hour heart tape, but nothing seems to have come of it - I need to contact my GP's again I guess.

I'm resigned to the fact that my nose and sinuses are never going to be the same after two pituitary surgeries via the nasal cavities, but there you go! I take a fluticasone steroid nose spray every day which helps to minimise the irritation. Having started swimming, I've noticed that my nose and sinuses become hugely irritated by the chlorine and if I don't use my sinus rinse after swimming, I wake up the next morning sounding incredibly nasal. I love singing and occasionally if my nose is really irritated it does affect my voice, but for the most part the fluticasone spray seems to work.

So there you go! Six months down the line, overall I'm probably feeling the best I have in a very long time, albeit with some minor niggles. Fingers crossed the good progress continues.

Monday, 1 July 2013

A Day in the Life of an Irregular Blogger

Aloha! It's been another age since I've written in here! My apologies. I thought I'd pop by to give you a quick update.

Way back on the 15th April I had an MRI scan at the hospital (so long ago that I had to look up the dates in my diary at work...). I didn't get the results until the 20th May, when I had an appointment with a very nice nurse in Neurosurgery. My lovely boyfriend came with me to the hospital and saw the scan images, so I guess now he is in the enviable position of having seen exactly what's going on inside his girlfriend's head!

The scans look pretty good - it's always hard to tell just from an MRI, but the surgeons were optimistic that they managed to remove the whole tumour, and there's nothing obviously wrong in the images. The trouble is that the pituitary gland is so tiny - about the size of your little fingernail - so even with the contrast injections, at best an MRI is only an indication of what's going on in there - blood tests are very important as well. But the surgeons are very happy with me, and as far as they're concerned, I don't have to have another MRI for a year. Hurrah!

On the 27th June I went to see the endocrine nurses for a synacthen test. This test evaluates how well the pituitary is producing adrenocorticotropic hormone (ACTH). This hormone is really crucial for your body, and because there's always a risk that surgery can damage the pituitary gland, patients who have transsphenoidal surgery are put on replacement steroid medication as a matter of course. The doctors will only let you come off the medication if a synacthen test shows your pituitary gland is now able to produce ACTH on demand.

I already had one of these tests back in March and my pituitary had a fairly good response, but not quite good enough to come off the medication totally. The endocrinologists halved my dose of hydrocortisone, but I'm still taking 5mg in the morning and 5mg at midday. I'm hoping that the results of my test last week will be good enough for me to come off the steroids totally. It would be in line with what happened after my last operation, when it took about six months before I was able to come off medication. Certainly immediately after the operation I was in need of the steroids - about a month after surgery, I forgot my 4 o'clock 5mg dose, and was a complete emotional wreck all evening until I remembered I hadn't taken it at about 7pm. I took it - and half an hour later I was already feeling immensely better. More recently I have forgotten to take my hydrocortisone on time once or twice and not had any ill effects at all, which hopefully is a good sign.

I don't know yet what date I'm due back at the hospital for my next proper follow-up with endocrinology. I had thought it would be the end of June, but apparently it's actually going to be the end of July, four months after my last clinic appointment. Then I should get the results of the synacthen test, and the other blood tests they did at the same time to check my thyroid levels.

Monday, 6 May 2013

I'm Still Here!

 Aloha! Long time no blog I know, profuse apologies all round. Partially I have been lazy, partially I have been working on other projects and partially I have been enjoying my recovery!

I went back to work around the beginning of March. I did a phased return, which I really recommend - the first couple of days back I felt pretty much exhausted by lunchtime, but by the end of my first week I was almost back to normal. So I've been back for two months now (how time flies!) and doing good.

I had a series of blood tests done in March by my endocrinologists and they came back looking good. My ACTH response wasn't quite back to normal, so I'm still taking hydrocortisone (albeit at a low dose), but my endocrinologists were optimistic that hopefully I'll be able to come off it in a few months. The same thing happened after my first surgery, so fingers crossed! The rest of my pituitary hormones are all fine - my TSH and free T3 and T4 came back the lowest they have ever been.

I'm back up to my pre-surgery level of fitness now too, and hopefully going to surpass it! I dance for 3 hours a week, swim for an hour, do lots of walking, the odd run, and yesterday I bought a bicycle so now I'll start doing some cycling too. I'm only taking propranolol very occassionally - I still get the odd bout of a fast resting heartrate, particularly after eating, but it's not often. I'm off to the doctors for an ECG to check that out tomorrow, although chances are it won't show anything and they'll need to do a 24-hour heart tape.

So all in all things are looking good so far. I've had an MRI scan now but I don't get the results til the 20th May when I go to meet with the neurosurgeon. Fingers crossed!

Wednesday, 13 February 2013

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!

'Flu Jab!

Well, I also heard back from endocrinology yesterday; turns out that they too managed to bugger up my appointments. So the pituitary clinic appointment I was given for the 21st February was cancelled; instead, I'm going in to see the nurses for blood tests on the 28th and am being sent an appointment for early March by post. The lady at the end of the telephone thanked me for calling and alerting them to the fact I hadn't received a "clinical investigations" (what they insist on calling blood tests) appointment, as otherwise they would have booked me in for the 28th anyway and I'd have turned up on the 21st to meet a confused endocrinologist wondering why no blood test results were on the system for me.


So of the three disciplines who are chiefly in charge of my post pituitary surgery aftercare (endocrinology, ENT and neurosurgery), only neurosurgery managed to arrange my appointments without messing it up - although given that they epically messed up my pre-surgery appointments, they don't exactly get any gloating rights as a result.


I went to the GPs yesterday to get a new hydrocortisone prescription and get all my info up to date and get my letter signing me off work. The GP was new to me - since joining the new GP's practice last year, I've been pick'n'mixing which doctors I see, I don't really have a regular GP there - and he was very nice. He even suggested I have a 'flu jab - it's kind of late in the season now but it would definitely not be fun to have the 'flu at present. So I did! He warned that I might feel a few 'flu-y symptoms for the next day or two, but actually last night I felt really good. My boyfriend and I made pancakes for pancake day (first course: ham cheese & chive pancakes; second course: oak smoked bacon and maple syrup pancakes; third course: lemon and sugar pancakes), which were delicious. I had more energy than I have had most evenings since my surgery, which was greatly appreciated. Fingers crossed my energy levels start going up from now on!

Tuesday, 12 February 2013

Phone Calls Galore

Yesterday I went into the hospital to have some blood tests done - sodium levels and thyroid-stimulating hormone levels. I got the results this morning in a phone call from my endocrinologist - speedy service! - and the good news is that they're both normal and, indeed middle-of-the-normal-range. Hurrah!

My endocrinologist suggested that one of the reasons I might still be getting so tired is that my body could be effectively "crashing"; having been used to fairly high levels of thyroid hormone coursing through its veins, suddenly having lower (if more normal levels) might come as a bit of a shock. Having too much thyroid hormone (hyperthyroidism) gives symptoms similar to an excess of adrenaline, all the body's systems speed up - heartbeat, metabolism etc - while having too little thyroid hormone (hypothyroidism) is characterised by more of a "slowing down", with symptoms like fatigue being common. Happily it seems that I'm not hypothyroid, but after having been hyperthyroid for a fair while, my body may still be struggling slightly to adjust to the lower thyroid hormone levels.

I also have been back to my old tricks of chasing the bloody hospital up for appointments. I was expecting an appointment with ENT four weeks post surgery - as today is my four-week anniversary and I'd not heard anything, I called them. Apparently they were "never notified of my discharge" and consequently no appointment was booked. So I won't be seeing them until the 7th March. Endocrinology have booked me in for a clinic appointment to see the doctors, but appear to have neglected to book me in for the various blood tests I'm supposed to have before then; unfortunately they don't like having humans answer their phone, so I've finally had to leave them a message asking what's going on.

Opthalmology have gotten involved now and want to check my eyesight is ok, as pituitary surgery is carried out very close to the optic nerve and there is a risk of damage to the vision, but I've yet to arrange a date with them because, having made all these other phone calls, I am tired. And it's almost lunchtime.

Sunday, 10 February 2013

The World's Most Imaginative Title: An Update

Well, I attempted to get to the hospital on Friday for the blood tests I needed, but unfortunately my endocrinologist was in meetings all morning and I couldn't get through to her. She got back to me around half two, but by then I'd walked into town and back, and I was in need of a break; there was no way I'd get to the hospital then. So, I'll try again tomorrow.

I had a nice time with my mum, who came to visit, anyway. Then yesterday a couple of friends came over for tea and cake, which was lovely! At present I can generally manage about 2 - 3 hours of being sociable before I really need a rest (the time is increased if I'm curled up on a sofa for the duration; decreased if I have to do lots of walking or consider complex philosophical problems). I don't generally nap during the day - I think the hydrocortisone I'm on keeps me awake mostly - I just need to sit down somewhere quietly and read or watch TV for an hour or so.

Also: Happy Chinese New Year! I'm off to have a delicious Chinese meal courtesy of my excellent local takeaway :D

Thursday, 7 February 2013

More Blood Tests

Had a phone call from my endocrinologist today. On the 22nd January, I had blood tests done to check out my serum osmolality, which basically looked at the sodium levels in my blood. Getting the results was not so simple; I was registered as a temporary resident at my old GP's where my parents live, and the GP was not confident about interpreting the results of the test, as he does so few of them, so he faxed the results for my endocrinologist to interpret.

I never heard back from my endocrinologist, and although I thought about calling frankly I couldn't be bothered because trying to get a hold of them is always such a ridiculous faff. So I assumed no news was good news. Then they called today, to say that when the blood tests were taken, my sodium levels were a bit low. So I need to get that checked out with another blood test. It's fairly common for sodium levels to drop a bit right after this kind of surgery and then self-correct, and I don't really have any symptoms of low sodium levels, so I guess we'll have to wait and see.

The endocrinologist asked how I was feeling and whether I was "back to normal", which kind of surprised me as it's only been three weeks and two days since the surgery. I said no, which seemed to surprise her - she asked in what way, so I explained that I get tired, I'm still kind of slow and I get worn out quite easily (I occassionally get a little headache and my nose is definitely not back to normal but the tiredness is definitely the key point!). All of which seemed perfectly normal to me shortly after a major operation, and in fact I'm considerably less tired and slow than I was after my last surgery (although that is mainly because I was super pathetic last time). But she wants to check out my thyroid levels as well, in case my tiredness is a symptom of hypothyroidism; there's always a risk that, having removed the pituitary tumour producing thyroid-stimulating hormone, they've removed some of the healthy pituitary tissue as well and that therefore I've gone in the other direction and now have low, rather than high, thyroid levels.

I was a bit worried about that immediately after the phonecall, but then my boyfriend pointed out that she could well have been mixed up as to how long ago my surgery was, or that they could just be being very cautious. Because I had an injection of lanreotide (which lowers your TSH levels) just a week and a bit before the surgery, there's also the possibility that the drug is still in my system and is now lowering them too much.

So the long and short of it is: more blood tests, wait and see!

Wednesday, 6 February 2013

Sad News about Tanya Angus, Acromegaly Sufferer

I've been out of the world for a little while thanks to my surgery, so I was saddened to find out only today that Tanya Angus, an acromegaly sufferer, passed away on the 14th January. She was aged just 34, and died from heart failure and transient ischaemic attack (a "mini-stroke").

Tanya Angus had one of the most severe cases of acromegaly (a.k.a. gigantism) ever seen; it was not until her pituitary adenoma (tumour) grew to the size of a grapefruit that she was finally diagnosed. By this time, the tumour wrapped around her pituitary gland proved extremely resistant to surgical and radiotherapy treatment. Her condition caused her to grow from 5'8" at the age of 21 to 7ft tall by the time of her death, and to go from 130 to 400lbs. Just last August it seemed that injections to inhibit her growth hormone production had been successful, but by October sadly her levels of growth hormone were rising once again.

She was a well-known figure in the acromegaly community for her efforts to raise awareness of the condition, and to encourage education about and early detection of gigantism among the medical profession. Anyone reading her website, or the comments sections of the various news websites which reported her death, can't fail to notice how many of her fellow acromegaly sufferers viewed her as an inspiration.

Tuesday, 5 February 2013

Back Home

I moved back to my house on Sunday! I'd been staying with my parents after being discharged from hospital post-surgery, because I was basically super pathetic and really needed someone to be around all the time at first. Now I'm able to make myself a cup of tea and some lunch, and walk a reasonable distance, I judged myself able to head home. One of my housemates works from home and is therefore in most of the time, so there'll still usually be someone around to keep an eye on me, which is nice (for me; she may have her own views on the matter...)

Moving back was quite a busy day - my parents live over an hour's drive away and I had to pack everything up ready to head home. I'm definitely not allowed to do any heavy lifting, so the actual fetch-and-carry part of the process had to be left to other people, chiefly my mum and dad (sorry!). We got back, I had a little rest and unpacked my clothes (some of the other stuff is still in bags - I'm progressing, just slowly), and then walked to a nearby pub for a drink. My walking is quite entertaining - I can walk for half an hour or so at a time quite happily now, but what happens is that I start off at something approaching a normal pace and then get slower and slower over time, like a clockwork girl who's losing power. Consequently half an hour's worth of walking does not cover what I would normally consider to be half an hour's worth of ground.

So I'm doing pretty good really - made it into town and back yesterday, although I had to stop for a lengthy coffee break once I got there, and when I got home I curled up in my room and just read for a couple of hours, I definitely felt tired.

I've only had one appointment through from the hospital so far, so I suspect I'm going to have to chase the rest up, joy of joys! I was told I would see the ENT surgeon at four weeks after the surgery (for another camera-up-nose session, alas), have blood tests done at six weeks, see the pituitary clinic at eight weeks, have an MRI at eight weeks and then see the neurosurgeon a couple of weeks after that. So my schedule will shortly be full of treats!

Tuesday, 29 January 2013

Back on the ward

Once I woke up after my endoscopic transsphenoidal pituitary adenoma resection surgery (that's what they called it on the forms!) I had half an hour or so in the post-surgical recovery area to rehydrate and have regular neurological checks. I had these throughout my time in hospital, with decreasing regularity. They ask you where you are, what year it is etc (it usually takes me until at least February to readjust to a new year so I had to concentrate for that one), then there are physical tests; squeezing hands, pulling and pushing with your hands and feet etc. to check that nothing weird's going on in your head.

The last time I had pituitary surgery, I was pretty perky afterwards, probably because I had a whole bunch of morphine when I woke up. This time however, my head barely hurt when I woke up, so no morphine, so I was rather more subdued... Which I think everyone else was probably thankful for. I was taken onto the ward and my parents arrived not long after. A nurse brought me a yoghurt to eat and then a tuna sandwich - I only managed about a quarter of it, but it was really nice to have some food, and when the tea trolley came around I was practically in heaven.

At first I had to have observations taken every half an hour for the first six hours, then once an hour for six hours, then every two hours, and so on. Observations involved measuring blood pressure, blood oxygen levels, heart rate, breathing rate, pupil response to having bright light shone in them (usual response: argh, get that light out of my face), and the aforementioned neurological tests.

I was really not in much pain at all, I had some paracetemol and that was all I needed with regards to painkillers - I was up and walking to the loo within two hours of waking up, so I did pretty well I think. They start you on hydrocortisone, a steroid medication, immediately after surgery (via IV drip initially) because there's always a risk that your body will stop producing steroid hormone after the operation, which may be temporary or permanent.

The most exciting thing to happen was a ninja nosebleed, which suddenly appeared from out of the blue. A nurse ran up to the neurosurgical theatres to grab a selection of bandages wrapped up in bandages, to tie around my face like an attractive surgical moustache and catch any unexpected oozing.

Monday, 28 January 2013

Sick Note

It turns out that the procedures for getting signed off sick from work in the UK have changed since the last time I had pituitary surgery. I didn't know this, and nor did most of the doctors, nurses, surgeons and assorted healthcare workers at the hospital, but apparently that these days the hospital can only sign you off sick for the period you were actually in the hospital. Your GP has to certify you for the rest of the time. Seems a bit random given that the consultants at the hospital probably have a much better idea of how much time off you need, but nevermind.

Anyway, this has resulted in me receiving from my surgeon a little certificate entitling me to a grand total of three days off work. Reason given: brain surgery.

Sunday, 27 January 2013


Going Under

So I was wheeled into the little anteroom by the operating theatre; the connecting doors were open so I could see into the main theatre room, which was a bit weird. The first thing they do (reassuringly) is to check you're the right person, both by asking you and by checking the ID tags on your wrist and ankle. Then it becomes a bit of a flurry of activity really; you have to untie the hospital gown so it's basically just an extra blanket, make sure your glasses are labelled before they take them off, etc etc. The various anaesthetists and nurses and assistants are really lovely; both times I've had a general anaesthetic, they've done a stellar job of distracting me and keeping me feeling pretty calm about the whole thing.

I had a mask with some oxygen flowing to breathe while they put a cannula in my left wrist. The anaesthetist warned that I might feel a little sting as the anaesthetic was administered, but it was actually surprisingly painful as it moved up my arm. Upon waking up I discovered that at some point the vein had blown, they'd taken that cannula out and put one in my right wrist instead, so I don't know if that would explain why it hurt more than I expected. Equally possible I guess is that it always hurts like that but most people forget once they've been knocked out?

Incidentally, common misconception about cannulae; they're little flexible plastic tubes that sit inside the vein, they don't have needles in - the needle is just used to insert it and is then removed.

Waking Up

I woke up gradually and was fully awake by about half-past twelve; there was a clock opposite my bed. Immediately I took this to be a good sign, as I knew I'd had the general anaesthetic about nine. Given that it would have taken some time to get me into and out of the theatre, that vaguely indicated an operating time of around three hours, which implied there probably hadn't been much in the way of complications like, say, a cerebrospinal fluid leak. Lack of complications is good.

The first thing I noticed, of course, was pain: I didn't have much of it. The second thing I noticed was: there were no bandages in my nose! Last time I had transsphenoidal surgery, my nose was packed with rolls of wadding afterwards, and having it taken out was a pretty unpleasant experience. This time? Nothing. My nose was a little delicate, but it was bandage free and, remarkably, not even oozing at that point. A lovely nurse explained they had filled the wound with a kind of foam, which sets hard and then dissolves slowly. Occassionally over the next few days I would feel it creaking slightly in my head and sinuses, which was an extremely weird sensation but happily caused no actual pain.

As expected, I was really thirsty and my throat was sore from the tube they put down it. The very nice nurse came and asked me my name and where I was, and brought me a cup of water. With a straw. On reflection, maybe I should have remembered that you're not supposed to drink through straws after pituitary surgery, and in hindsight the three cups of water I proceded to drink using said straw may have contributed to the epic nosebleed I experienced some time later once I got back onto the ward. But it's hard to think straight when you've only just woken up...

Thursday, 24 January 2013

Preparing for Pituitary Surgery

?Aloha! Had a good day today and yesterday. I have managed a gentle potter around the village and a hot chocolate at the local pub with my dad and auntie, which was really nice although it left me totally shattered.

I thought I'd try to keep things in vaguely chronological order and write a bit about preparing for my pituitary surgery. Of course, as discussed previously I'd been doing my MRSA eradication protocol, and I'd packed my bags ready to go in. Super diligent readers may recall that I once published a list of my top tips for people about to have pituitary surgery; number one on the list was  "shave your inside elbows". This is because of the sheer number of blood tests you have after surgery - the tape they put over your elbows is put on and pulled off  until it feels like you're being given an extremely incompetent and lengthy elbow waxing.

Instead of shaving, however, I went one step better and bought some hair removal cream, slapped it on the night before and boom! hair free inside elbows without that stubbly regrowth you get from shaving. By the time I left hospital, despite all the blood tests my arms were so much less painful than last time I had pituitary surgery - highly recommended!

On the morning of my surgery, I got up early - I had to arrive at the hospital at seven am - and took off my nail polish - with regret, because it was awesome.  "But why are you not allowed to have nail polish on during surgery?" I hear you cry? Because a) nail beds changing colour during surgery is a warning sign of Something Wrong, and b) some (but not all!) colours of nail polish may interfere with the machine they use to measure blood oxygen and heart rate (a pulse oximeter), which clips on to a fingertip and works by essentially shining light all the way through your finger.

No matter how awesome, it has to go!

I was quite nervous as we left and drove to the hospital. We were sent to wait in the neurosurgery day room, which was pretty rammed with impatient inpatients. I was the first one to be called through to a ward, given my own bed area, had my bags tagged with my name and hospital number etc. Highly attractive lime-green-and-white compression socks were issued to me, and my legs duly squeezed into them; then came the sexy hospital gown. My hospital is good for having gowns which actually wrap the whole way around and don't leave your arse hanging out the back (technical medical term there), but unfortunately actually tying the tags up is like a complex macrame manouvre.

Next came the doctor parade. I arrived at the hospital at 7am; I was due to be wheeled out to the theatre for my pituitary surgery at a quarter past eight. In that time, I was due to be seen by a neurosurgeon, an anaesthetist, an endocrinologist, another different endocrinologist, and a nurse to run me through giving consent. Plus I had to change into the aforementioned garments and get my hospital and allergy tags.

It might have been fine, but I didn't get seen through to the ward until twenty past, meaning that there was less than an hour to see five different people and change. Unsurprisingly, I ended up late. Most of them were coming to have a quick chat and check that I understood the procedure, so they didn't take too long, but there's no clear timing for each of them, so there were times when two people arrived at the same time and one of them had to leave, and times when I was sitting around kicking my heels with no one there. The additional endocrinologist had requested my permission to keep part of my pituitary tumour after the surgery for research purposes. TSHomas (pituitary adenomas which produce thyroid-stimulating hormone) are extremely rare, so I was happy to consent - but it takes some time to run you through the yays and nays and signatures and things. To be honest, I think it was a little silly that they left it right until the last minute to ask me to take part in the research; they could have gained my consent at any one of my numerous pre-surgery hospital trips.

And the nurse had to take me through a relatively long questionnaire. Because it's neurosurgery, they have to be very careful about whether or not you may have any increased risk of variant Creutzfeldt-Jakob Disease (which you may know as mad cow disease). The prions which are believed to cause this illness are extremely difficult to deactivate, and are potentially transmissible on surgical equipment, so they have to check whether you have any increased risk of vCJD.

Consequently, it was a quarter to nine before I was wheeled out of the ward and off to the operating theatre. The ward nurses were stressed because I was half an hour late and they'd been getting angry phone calls from everyone waiting in the theatre. I said a quick goodbye to my parents. It was pretty nerve-wracking, and also strange because I'd never been through that part before - last time I had surgery I was wheeled off "for a CT scan", and then my surgeon dashed into the scanner waiting room, announced I was supposed to be in surgery, and wheeled me off. The porter who wheeled me off regaled me with tales of his childrens' teenage pregnancies. There was a brief moment of difficulty as they struggled to fit my bed into the lift - apparently I was in an extra large bed usually used by pregnant women and morbidly obese patients: cheers, hospital - and I was off...

Tuesday, 22 January 2013

MRSA Eradication Protocol a.k.a Massive Hassle

So before having my pituitary surgery, I went for a pre-operative assessment at the hospital, which mainly involves blood tests, sitting around in waiting rooms, and being asked lots of questions by nurses. It also involves being swabbed for MRSA.

MRSA stands for methicillin-resistant Staphylococcus aureus, which basically is any form of the Staphylococcus aureus bacteria which has evolved resistance to standard antibiotics. It's no more virulent than your standard S. aureus bacteria, just harder to treat - and many people carry it around on their skin or in their nose or throat without suffering any adverse effects.Unsurprisingly, it's very bad news in hospitals; if it infects open wounds it can cause potentially fatal blood poisoning or endocarditis. So, before you're admitted to hospital they swab you to find out if you're carrying MRSA.

So far, so standard; that all happened last time I had pituitary surgery. The difference was that this time, about twenty minutes after I'd done the swabs, a nurse dashed into the room where I was chatting to the surgeon, handed me a bottle and a piece of paper, and dashed out. Upon closer examination, it was a bottle of octenisan, which is an antimicrobial body wash used to eradicate MRSA . No-one seemed clear on whether or not I actually had MRSA on my skin or not - it was only when I got into the hospital for surgery a week later that I found out I had been MRSA negative. It seems all the neurosurgery patients had been given the body wash, as a precautionary measure.

And my god, was it a hassle. It would probably be fine for lots of people, but I own precisely two towels and two sets of bed linen, and the "eradication protocol" requires not only that you use the body wash every day, but that all linen, clothes, towels etc. are freshly laundered too. This meant a hell of a lot of laundry every time I got home in the evening; on top of which, you have to leave the body wash on your skin for at least a minute, which required quite a lot of bravery in our icy cold bathroom.

Obviously I'd much rather go through all the hassle than end up infected by MRSA, or give it to anyone else - but my word it has made me resolve to buy some more towels...

Monday, 21 January 2013

Post surgery update

It's coming up on a week now since my pituitary surgery last Tuesday morning. This time last week, I went out to a meal with my boyfriend and parents, then headed home for some last-minute packing.

I seem to be doing pretty well so far (touch wood). Yesterday was fun, my boyfriend's parents came to visit which was really lovely, and I even made it outside in the snow very briefly. Normally, I am a keen maker of snowcreatures (my best effort to date being a snow walrus) so it has been very sad for me to not be able to take advantage of the weather.

Today is the first day I've not had an afternoon nap, though I'm mostly still alternating between lying on my bed and lying on the sofa downstairs. I think compared to last time I had surgery I feel a bit more awake mentally, but physically I'm still super pathetic. My brain is quite happy typing this all up, but my body is protesting that it would be so much easier to just lie down. Except then I get super bored.

In terms of medication, I'm taking hydrocortisone - that's standard after pituitary surgery as there's always a risk that the pituitary gland will stop producing adrenocorticotropic hormone after surgery, which could be quite serious. I have a nose spray and also (prepare for grossness) I have to rinse out my sinuses three times a day. It basically involves putting a bottle full of saline solution against one nostril and gently squeezing; the water then goes up one nostril and out the other. It is a very disconcerting sensation but it's actually really good. Last time I had pituitary surgery, no-one suggested this, but because I had endoscopic transsphenoidal surgery this time, an Ear Nose and Throat surgeon worked alongside my neurosurgeon, and he has instructed the sinus rinsing. The result is that I can breathe through my nose less than a week after surgery, which is a huge improvement on last time.

Saturday, 19 January 2013

I've had my second pituitary surgery!

Aloha! I'm typing to you from the sofa in the front room of my parents house, on my beloved laptop Larry (who, incidentally, I received as an early birthday present the last time I had pituitary surgery).

I had my second transsphenoidal pituitary surgery on Tuesday morning. Happily, I was first on the list for surgery that day, so I rocked up at the hospital at 7am, was having anaesthetic administered at ten to nine, and woke up in the recovery room at half twelve.

Although I was told that I would be in hospital for a minimum of 4 - 7 days after surgery, I actually managed to get released a day early, on Thursday, which was a bit of a surprise for all concerned really. The endocrinologists were happy to give me the all-clear to leave early, in part because it's a long car journey to my parents house from the hospital and heavy snow was forecast for Friday.

I will have to write about my pituitary surgery experience in dribs and drabs, I'm afraid, I'm not quite up to typing the full story in one go at the moment. Essentially the surgery went well; there's a slightly higher risk of complications such as cerebrospinal fluid leak after your second surgery, but so far (touch wood!) I seem to be doing ok. The neurosurgeons seem very happy with how the operation went; it was endoscopic transsphenoidal surgery this time, which gives a much better view of the surgical site, and the surgeons seem confident that they managed to remove the pituitary tumour whilst leaving the pituitary gland itself intact. They also said that the lanreotide injections I've been on for the last couple of months seem to have had a noticeable effect on the tumour, shrinking and partially liquefying it, which made the surgery easier.

Anyway, that's more than enough typing for my tired head. Ciao!

Wednesday, 9 January 2013

Ear, Nose, and Throat

When I got my appointment to see the ENT people, I learned a new word. Not panjandrum (although that is another new word I learned recently and haven't had the chance to trot out yet) or fissiparous (likewise), but otolaryngology. Which, it turns out, is the proper name for Ear, Nose & Throat. I had always vaguely wondered why other medical departments got to use such fancy names - cardiac for heart, renal for kidney etc - while the poor Ear, Nose and Throat people were stuck with a name that sounds like an extended edition of the popular children's song "Heads,Shoulders, Knees and Toes". Turns out they do have a fancy name after all. Who knew?

So I went to see the otolaryngologist. I went into his office and he asked about the problems I've had with my nose and sinuses since my first operation - I still use a nose spray twice a day because otherwise it's too painful. He was very nice, right up to the point where he announced he was going to put a camera stick up my nose.*

Firstly I had to have a topical anaesthetic, which was administered as a nose spray. It went right down my nose and numbed the back of my tongue as well, which not only felt incredibly strange but tasted revolting. Then after giving it a few minutes for the anaesthetic to work, out came the camera stick which was slowly fed into my left nostril. It wasn't too bad at first, although it was incredibly freaky to see quite a long stick disappearing into my head. I felt like one of those "human blockhead" circus sideshow acts where they hammer nails into their nose, except it was uncomfortable enough even with topical anaesthetic that I can't imagine volunteering to do it without one.

Then once the camera was at the back of my nose, the otolaryngologist started poking around more, and that was genuinely painful; it was quite hard to keep my head still and my eyes were watering. Then of course, he had to do the other nostril.

The good news was that there's nothing much wrong with my nose, although part of one of the structures inside (I cannot for the life of me remember what he called it, and Google has been no help) has ended up knocked sideways, probably from the surgery. I just have to keep using the nose spray I already take, indefinitely. It may eventually clear up, or it may not.

Then after the pituitary surgery, I'll go in to have a check up with ENT once I've healed up. After the operation I have to use a nasal wash, which sounds pretty gross - basically it involves putting saline solution up one nostril from a little pot and rinsing it around inside your nose. Eurgh. I have heard of this before, I believe it's quite common in India and Pakistan and that part of the world - I believe in Pakistan recently there was an outbreak of cases of naegleria fowleri, a particularly nasty brain-eating amoeba (no, I'm not making this up) as a result of people using water that hadn't been boiled to wash out their noses.

So the moral of the story is: boil the damn water.


Anyway, then I returned home to regale my housemates and boyfriend with the story in glorious technicolour detail, by which time thankfully the anaesthetic had mostly worn off and my face was starting to feel a lot more normal again.

* N.B. In fairness, "camera stick" is not the term he used.

Tuesday, 8 January 2013

Round 2 With Neurosurgery

So, back to the story of my various experiences way back in November! A mere two months late...

On the 5th November, I had an appointment at the Neurosurgery clinic - as I discovered less than a week beforehand. I had been very nervous about it, but I turned up at the hospital on time, and went through the strange procedure in Neurosurgery where they seat you in one waiting room for five minutes, then lead you through to a second waiting room further along the corridor shortly afterwards. The last time I had apre-surgery appointment with Neuro, I was kept waiting for about three hours, so I had come prepared with su-dokus and a lengthy novel - but amazingly this time I was only there for around twenty minutes.

 My second surprise when I was shown in to see the surgeon was that he was actually the surgeon named on my paperwork; previously when I went to meet the surgeon, I just met a member of the surgical team, not the leading surgeon dude himself. But there he was, complete with a trainee doctor who was shadowing him for the week. It's a teaching hospital, so I'm quite used to having an assortment of medical students sitting in on my appointments; the highlight was probably a charming exchange student from Japan who was assigned to the endocrinology department. When an endocrinological emergency meant that we were sat alone together in my endocrinologist's office for twenty minutes, he admitted that he had no desire to become an endocrinologist himself, but we did have a very nice chat about Japanese medical schools.

So, I sat down and the neurosurgeon mentioned the results of my recentMRI pituitary scan, and seemed surprised to hear that no-one had told me about them. Back when I first became a patient, when I had an MRI someone was guaranteed to phone me and let me know the results, but alas in recent times this seems to have completely fallen by the wayside, and it's so much hassle trying to call up and find out myself that I tend to just wait until my next appointment to find out.

It was good news; the pituitary tumour hadn't grown since the previous scan in July, and in fact if anything they thought it might have reduced in size slightly, although it's difficult to tell with these things unless it's a substantial change. I had the scan at the end of October, by which time I'd been on my lanreotide injections for two months continuously, and before that I had an injection in August which lasted for a month, followed by a month without medication before the injections started again. So it looks like they were effective at controlling the pituitary tumour growth, which is excellent news! Although I've had the injections before, they've never really looked at whether they had an effect on the size of the tumour by scanning a "before and after" shot, which is something I've found a bit strange, to be honest.

Despite that, the neurosurgeon was (perhaps unsurprisingly) keen to press on with endoscopic transsphenoidal surgery. The risks are largely the same as last time, although slightly increased as it's a second surgery. There's about a 15% chance that surgery will leave me with hypopituitarism - i.e. unable to produce one or more pituitary hormones. The most likely one to go would be thyroid stimulating hormone, as that's what the tumour produces, but it could be anything. Any hormone that I can't make would need replacing with medication (except possibly growth hormone, which they don't tend to replace unless strictly necessary), which I'd probably have to take permanently (although it depends; some people develop hormone deficiencies right after surgery and then recover). I'll be back on the steroids after the surgery until it's clear that my pituitary is producing ACTH (adrenocorticotropic hormone) again. Last time I was given a pill slicer when I left hospital, which I managed to lose, to my great regret - I'm secretly hoping I'll get another one.

There's also a slight risk of waking up with permanent double vision. The surgeon told me that he "can't remember" the last time this happened, but until I see a certificate assuring me that he doesn't have any kind of early-onset dementia, I refuse to be entirely reassured. It's because the tumour is now over to one side of the pituitary and surgery will thus be taking place closer to various important eye nervy things. I hope I'm not confusing you with all this technobabble.

It's a slightly different type of surgery I'll be having this time, endoscopic transsphenoidal surgery, which takes a bit longer but should have better results. I'll be under anaesthetic for longer, so probably will have more side effects from that and take longer to get over the anaesthetic. On the plus side though, they might not need to put packing in my nose afterwards, which would be awesome, because having the packing taken out last time was So Not Fun. However, I bled oozily from the nose for like three days last time and had to wear a hilarious moustache made out of bandages to catch all the blood (sorry for the TMI) for several days, so I guess I might be one of the unlucky cases who still needs packing. But oh my goodness, it would be nice not to have it.

Anyway, the whole consultation didn't take very long at all really, I couldn't think of any good questions, so I went home. The very next day, I was off to see the Ear Nose and Throat people... and have a tiny camera pushed up my nose. But more on that next time...

Monday, 7 January 2013

An Update: Surgery Next Tuesday

Preparations are coming on apace for my pituitary surgery on (drumroll...) the 15th January! (That's next Tuesday, for those who are hard of thinking.) Compared to last time, I feel a lot more relaxed about the whole thing. Partially it's because it's not an unknown quantity; I've had the operation before (albeit with a slightly different surgical approach, as this time it will be endoscopic transsphenoidal surgery) and I know much more what to expect. I think the timing is pretty good too; as it's so soon after Christmas, I didn't really think about it much over the holidays and now it's practically already here!

There's always the faint worry that they might cancel it at the last minute again, which would be really annoying, but there's not a lot I can do about that. I've been doing lots of fun things in preparation for being an invalid for six weeks; yesterday my boyfriend and I went on a really nice walk in the countryside nearby, and next Sunday I've planned an afternoon tea party at my house (guest numbers are slightly restricted by the number of chairs we own) which should be fun. I did contemplate making it a neurosurgery-themed afternoon tea party, and trying to ice cupcakes with brain shapes, but sadly I suspect some of the guests might find that slightly offputting.

 I'm off to spend a day in hospital on Wednesday for all my pre-surgical check ups with endocrinology and neurosurgery. Mainly they centre around repeatedly asking questions about what medication you're on, symptoms, do you understand the risks of the surgery, etc. I think I'll also have an appointment with opthalmology - and I'll be surprised if they don't take any blood tests because it's practically a hobby now.