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
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...