Showing posts with label scans. Show all posts
Showing posts with label scans. Show all posts

Thursday, 5 July 2012

Medical Test Top Trumps

In relation to last night's post: Panic over! Turns out the darn thing is completely waterproof after all and I should have just left it on. Another example of my excellent sievebrain: good at draining pasta, not so good at retaining pertinent information about medical devices.

ANYWAY.

I am back from l'hôpital and I did indeed have an interesting time of it. While I did not appreciate waking up to an array of 23 blood tests yesterday morning, I can't deny that they hospital have been pretty darn thorough in their endeavours to understand what my pituitary tumour is doing to my metabolism! They also thoughtfully froze some spare blood - in case they later think of other blood tests they wish they'd done at the time. The tests were partly for research purposes into TSHoma and other rare thyroid conditions, and partly to decide how they want to move forward with my own treatment.

Here is a list of the tests and scans they did:

MRI Scan
CT Scan
PET Scan
DEXA Scans:
     - body composition
     - bone density (spine and hip/femur)
ECG heart trace
Step test
Actiheart 5-day heart rate and activity monitor
12 hour urine collection
Glucose tolerance test
GEM resting metabolic rate testing
TFT bloods
Blood pressure, blood oxygen, etc.
Symptoms/Quality of life questionnaire

Don't know what half of those acronyms stand for? Never fear, neither did I. All will become clear shortly. I had so many tests that there's no way on earth I could describe them all in one post, unless it was the longest and most terrifying blog post in the world, so I figure I'll go through what happened chronologically. In order to introduce an element of competition to the proceedings, I have decided to rate each medical test against a set of four criteria: Hassle (how much hassle the test was to undergo), Fun (how fun the test was. I may have to introduce minus scores), Weirdness (self explanatory) and Results (does the test produce a pretty picture/interesting information once completed).

Each type of test will be scored on a range of 0-5, and by the time I have finished it should be possible to play Emer's Medical Test Top Trumps. Just what you've always wanted!

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p.s. - forgot to mention, I took my camera with me as promised so I actually finally have a few photos to show you!

Thursday, 28 June 2012

My Transsphenoidal Pituitary Surgery: Part 1

And so, the day of my pituitary surgery dawned!

Or rather, it didn't. It was still dark when I got up that morning; I had to report to the hospital at 7am and I needed to get up early enough to allow time for paranoid checking and re-checking of my bag. Thank god for the internet - I packed in a rush the night before, but all I had to do was Google "what to pack for hospital" and I was supplied with numerous checklists that helped ensure I did not forget my toothbrush.

I reported in, accompanied by my mum and dad, and was duly supplied with my attractive compression stockings and various leaflets. I was assigned a waiting bed in the neuro day ward, and another lady who was having the same surgery was there as well. One of the nurses ran through the pre-operative assessment form again and I was swabbed for MRSA - apparently if you come up positive they don't cancel your operation but you do get moved to the end of the queue for that day, in case you end up contaminating the patients after you.

It was at this point that I started meeting anaesthetists. A woman walked into the room and introduced herself as my anaesthetist, asked me some questions, and let me ask her any questions I had. Shortly after she left, a man walked into the room, introduced himself as my anaesthetist, seemed surprised when I said I had already met someone claiming to be my anaesthetist, asked if I had any questions, and then left. These two certainly looked and dressed like anaesthetists, but I have to say that the third man to introduce himself as my anaesthetist was the most convincing, as he was sticking a needle into my arm at the time.

There was a lot of sitting around informing people that I wasn't pregnant that morning, plus the signing of various consent forms allowing them to keep slices of tumour for research purposes and promising them not to haunt them if I died. As hospitals are really an ideal setting for poltergeist activity, I for one felt this was pretty harsh.

At some point a nurse asked me to get changed into one of their haute couture hospital gowns, so I did. The lady in the next bed was wheeled off to her surgery. Somewhat later, two young men arrived and announced they had come to take me for a CT scan of my pituitary.* No-one had told me that I was going to have a scan, so this was something of a surprise.

The porters went out to confer with the nurses. There was a considerable amount of to-ing and fro-ing, mind-changing, phonecalls and confusion, but eventually it was decided that yes, I was indeed due to have a CT scan before the surgery. I was told it could take up to an hour, so I cheerily waved my parents goodbye and was wheeled away in my bed by the porters, whose social lives I learned quite a lot about on the way to the distant CT scanner.

I was taken into the scanning waiting room, in the bowels of the hospital, and my bed was parked up. It was not a cheery place; everyone else in there was really not well. I felt strangely fraudulent, sitting up in my wheely bed like a perfectly healthy person, waiting.

And waiting.

There was a bit of a backlog at the scanner, as per usual. I have no idea how long I had been waiting, when all of a sudden, Mr Pout (one of my surgeons - I wrote about him in this post) appeared by the side of my bed, all scrubbed up and out of breath.

"Miss Grey, we've been looking for you!" he cried, in what I felt was an unreasonably reproachful manner given that I had quite clearly not wheeled myself down there. "Everyone's waiting for you in theatre right now!"

Of all the WTF moments that the hospital has given me in our association, that was certainly the strangest to date. Mr Pout grabbed the bed and attempted to wheel me to the operating theatre; not an easy task, plus it was quite a long way away. Hospital beds are like larger, more dangerous supermarket trolleys and require two people for optimum maneouverability. Fortunately we (quite literally) bumped into one of Mr Pout's colleagues along the way, and she lent a hand wheeling me into a lift.

Along the way, Mr Pout breathlessly explained that they had originally been intending to do my pituitary surgery with teeny instruments and the aid of an ENT team (Ear, Norse & Throat; Treebeard doesn't do transsphenoidal surgery), due to my "narrow nasal passages".** In order for this to happen, the ENT people neeed a CT scan. However, when my surgery had been cancelled, they had cancelled the ENT team and had been unable to un-cancel them; consequently they would be doing the surgery the normal way, assuming the instruments would fit up my nose. There was a slight risk, Mr Pout informed me, that they would not.

At this point, Mr Hamstercheeks, the head surgeon appeared. I had never met him before. "

I was just explaining that the surgery might not be able to go ahead if her nose is too small," said Mr Pout.

Mr Hamstercheeks looked at my nose. "No, it'll be fine," he said.

HARSH.

"Can someone please make sure that my parents know I've gone into surgery?" I asked. A nurse asked for their details, picked a phone off the wall and dialled the ward where I had been to request that my parents were told. As I found out later however, somehow the receptionist on the ward managed to get epically confused and my parents were never told, despite asking where I was. They weren't bothered though, they went into town for lunch.

At this point I was still wearing my glasses, hairband, and slippers, which I had to take off; I was super nervous, but in a way the complete muddle over my surgery was kind of good - because it meant I was laughing as they wheeled me into the prep room. I met the third anaesthetist and various people starting sticking needles in my arms. It turns out the third anaesthetist used to live in the same road as me, so we got chatting about the local takeaways. At one point I thought I should just lie back and relax, let the various medical professionals do their thing - but then I suddenly became deeply paranoid that they'd think I was asleep when I wasn't (stupid I know) so I decided to keep talking as long as I was awake.

As this is what I usually do anyway, it was not a problem.

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*Possibly I should note that they were hospital porters, not kidnappers.

**If you haven't worked it out, transsphenoidal pituitary surgery involves sticking surgical instruments up your nose and drilling through the back of it to gain access to the inside of your skull.

Tuesday, 26 June 2012

Further Phonecall Funtimes With The Hospital

Another hilarious hospital moment: so on Friday I was heading to London for a friend's wedding (congratulations Mrs X!). The wedding wasn't until four, but I was doing the bride's hair and makeup and consequently heading down there nice and early. I felt almost certain that the hospital would attempt to phone me during the ceremony, because their phone call timing is always so hilariously dire. I am happy to report that they did not! Hurrah! Instead they called me just as I was trying to get onto a train, juggling three bags, one of which had to be kept upright at all times, and a cup of hot coffee.

Anyway, I made it to a seat without dropping the phone or spilling hot coffee all over my dress, and very proud I was too. The best part of the phone call was the beginning, which went like this:

ME: Hello?
ENDOCRINOLOGIST: Hiya, is this an OK time to talk?
ME: Yes, now is fine! (I am quite the liar)
ENDOCRINOLOGIST: SO I was just calling to let you know that I've confirmed the date for you to come in for your overnight testing on the 3rd to the 4th July-
ME: I'm sorry, did you say the 3rd to the 4th?
ENDOCRINOLOGIST: Yes, the 3rd to the 4th July, as we agreed on Monday?
ME: On Monday you told me it would be the 2nd to the 3rd...
ENDOCRINOLOGIST: Oh, did I? Sorry, it's actually the 3rd to the 4th. I'm always doing things like that, haha!

FACEPALM

Fortunately I could do the 3rd-4th as well, although I had to cancel plans to have dinner with a couple of my friends on the evening of the 3rd (sorry guys!). But I have to admit I was slightly taken aback at the fact that the endocrinologist didn't even inquire whether the new date suited me, despite the fact I would obviously have to re-clear it with work etc. She just assumed there would be no problems.

Perhaps at this point I should reiterate the fact that the hospital I'm treated at is in the main very good, with regards to treatment, explaining things, liaising across different departments, making sure I'm seen by multiple members of the endocrinology team etc. The nurses there are absolutely lovely, and when I had my surgery they really did look after me well. It's only in the administrative context that they fall down so abysmally, and I guess if it's a choice between a hospital providing very good treatment but being rubbish at arranging appointments, or vice versa, we all know which we'd prefer.

But anyway. The long and the short of it is that I will be going into hospital next Tuesday afternoon and staying in til around four o'clock on Wednesday. They've managed to arrange it so I will have my first PET scan on Wednesday so I won't have to come in again on a different day, which is good news. As for precisely what tests they are going to do, they've been kind of vague on the details but have said they'll send me leaflets on them; it's going to include a further pituitary MRI, some kind of body composition scan (I am now slightly afraid they'll tell me I'm composed of 90% fat), along with another bone density scan I think, and what I believe is technically referred to as a "shitload" of bloodtests.

I'm supposed to come off the beta blockers from the 31st and not take them at all until after my last set of blood tests on the 4th, which is going to SUCK. I have to travel through London on the 31st and I am really not looking forward to it now. I'm frequently finding I have a resting heartrate of about 120bpm at the moment and I've had to double my daily dose of beta blockers compared to what I was taking when I was on the lanreotide. Erk. I have expressed my annoyance on here previously at the fact that doctors really don't understand how rubbish tachycardia can make you feel; it just makes absolutely everything feel like really hard work. I'm also slightly suspicious that when I get there they might try and make me run on a treadmill or something (someone I work with had metabolic testing at the same hospital in the same facility and that's what they made her do) which without beta blockers would beeven less fun than usual!

So I'm going to try to remember to take my camera along with me to the hospital and take some pictures while I'm there, if they'll let me! Other people with medical type blogs always post pictures of their scans or having tests done or whatever and I never do, so I am determined to have a bash at it. If worst comes to worst I shall at least endeavour to get some exciting shots of my hospital bed...

Monday, 25 June 2012

IMFW: The (Un)Lucky Yasser Lopez

Incredible news recently of an American teenager who was shot straight through the head by a speargun and survived. After a three hour operation to remove the three foot long harpoon from his brain, he has been up and talking. The 16-year old was shot when his friend was loading a spear gun and accidentally fired it in the process. In an incredible stroke of luck, it missed almost all the major blood vessels in his head and pierced only the right side of his brain, meaning that his speech was unaffected.

Yasser Lopez was conscious and speaking when he arrived at the ER -a good sign, although he later had to be sedated; doctors also had to cut off part of the protruding spear before he could fit into the hospital's CT scanner (the scan images are incredible, by the way - I highly recommend following one of the links to take a look).

The story is reminiscent of the famous tale of Phineas Gage, much beloved of neurologists - and it should be remembered that even when people survive such accidents, they are highly likely to be left with some form of impairment, and follow-ups are critical.

Wednesday, 16 May 2012

*Censored* (A Rant)

Oh god, I hate hospital administration systems.

Two weeks ago, I went to the hospital. My doctors wanted to keep me off my medication for 6 weeks, despite the fact that this would worsen my symptoms, so that they could run some tests and do some scans while it was out of my system. They said they would arrange for one of their research people to call me and arrange the tests. I pointed out whilst I was standing right there with them that as I have exams and a holiday coming up, there would be some dates I couldn't do, but that I could write these dates down and hand them over immediately so as not to waste time.

No, they said, that's fine. I would get a telephone call in the next couple of days, no worries.

Two weeks later, no bloody telephone call, and I'm going on holiday for a week tomorrow. I don't have a number I can speak to any of them on directly, the best I can do is call one of the doctors' receptionist, who is only in for three mornings a week. So I called her yesterday morning and left a message pointing out that if they wanted to arrange these tests before I left, they would need to get their freaking act together.*

Today at lunchtime I managed to miss the receptionist returning my call. There were no apologies for the massive delay; she left a message saying there was no prospect of getting me booked in today and that I should call back on my return from holiday. There was also no explanation of how this went from being the hospital's responsibility to call me to being my responsibility to call the hospital.

Sadly, I am incapable of shouting swearwords at my phone loudly enough to make myself feel better.

It is so unbelievably frustrating that this seems to happen almost every time anything hospitacular has to be arranged. Oh, your surgery's postponed at the last minute. Oh, your surgery's now back on with less than 24 hours notice. Oh, your letter got lost in the mail. Oh, didn't I mention that you're going to be booked in for an overnight stay? Oh, your MRi appointment never got booked? Well there's no point in you sitting here in this neurosurgical aftercare appointment then! Bye!

This means that three weeks will have gone by before I get booked in for ANY of these arsemongering tests and scans. On my return from holiday, I have exams. Essentially, this "six week period off medication" just got extended to an "indefinite period until we can be bothered to get back to you, lol." They really have no clue how shitty it is to seesaw on and off taking this stuff. Every time I start/stop taking it, there's a bunch of side effects - it messes up my skin and appetite and stuff - on top of the symptoms I get anyway when I'm not on it (heart too fast, hair falling out, etc. etc).

In my now-lengthly experience, it seems that hospital doctors are completely clueless about the barrage of administration that patients have to maneuver through in order to ever actually see them. Once, a letter that was sent to me giving a time and date for an MRi scan was lost in the post. I knew I was expecting an appointment, so when I didn't get a letter, I called the endocrine department, the MRi department, the main hospital switchboard and even I think neurosurgery for good measure, to try to find out if an appointment had been booked. Everyone told me they had no idea, had no means of finding out, and no clue who I should speak to - except the MRI department, who told me that I definitely didn't have an MRi booked. About two months later, the letter eventually turned up, by which time I'd obviously missed it. At my next appointment with my endocrinologist, he actually attempted to give me a telling off for missing an appointment, and then clearly refused to believe me when I explained what happened.

Well, this has been a massive rant. I do feel slightly better. But I am still pissed off.

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*Except obviously I was politer than that.