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...

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...

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.

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!

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.

Ahem.

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.

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

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...

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.