health · Just for fun

Why You Should Always Find Out Your Surgeon’s Birthday

Today is my birthday! How old am I? Fortunately that’s not relevant to this blog post. Because today, we’re going to be talking about the most important birthday you need to add to your calendar. And, hard though it is to believe – it’s not my birthday… It’s your surgeon’s. Because a study in the British Medical Journal (BMJ) has found that patients who underwent surgery on the surgeon’s birthday exhibited higher mortality than patients who underwent surgery on other days.

Wait, what?

Yes, that’s correct. Your surgeon is more likely to kill you if they’re operating on you on their birthday. How’s that for a crazy fact – and a completely inappropriate topic for a light-hearted celebratory birthday blog post? In my defense, the study was published as part of the British Medical Journal’s fun and festive Christmas edition, so I’m not the only one completely misjudging the suitability of the topic for light entertainment.

It’s my surgeon’s birthday. How worried should I be?

The study looked at almost a million surgical procedures performed by 47,489 surgeons, and found that mortality rates were 6.9% on surgeon’s birthdays, compared to 5.6% on other days. That’s a pretty noticeable difference – but there are, of course, a few “buts”…

The study looked at 17 common emergency surgical procedures, performed on patients aged 65 – 99, at US hospitals from 2011 – 2014. The fact that these were emergency procedures performed on older people means the expected mortality rate for the first 30 days after surgery was already quite high. Unless you’re a 65+ year old undergoing a common medical emergency, even if it is your surgeon’s birthday, you’ve probably not got a 6.9% chance of dying. Good news for anyone getting an ingrowing toenail removed (or having pituitary surgery).

Additionally, apparently it’s actually comparable to the kind of increase in death rates that is seen at other times – including Christmas, New Year and weekends. So that’s… not at all reassuring, actually, now I think of it.

Why does it happen?

Well, the study was observational, meaning that the authors couldn’t establish the reasons behind the ‘birthday effect’ they observed, or exclude the impact of other, unmeasured factors. But they suggested a number of factors that could be at play:

  • Surgeons rushing to complete procedures on their birthday if they have plans to celebrate later on.
  • More distractions from birthday phone messages or conversations with team members, which could lead to more errors.
  • Surgeons being less likely to check up on patients following surgery, if they are busy with birthday plans.

They all sound totally plausible, although I’ve also thought of a few of my own that the researchers somehow missed:

  • Surgical staff suffering from a sugar rush and subsequent drop in blood sugars after eating birthday cake, impairing surgical performance.
  • One or two evil surgeons intentionally killing patients as part of some kind of sick annual birthday ritual. It’s probably a whole conspiracy, guys. I wouldn’t be surprised if it turned out Bill Gates was involved.

How reliable is the study?

I’m not a statistician, so I’ll leave that question to more experienced maths jockeys. I will say, however, that the letters section of the British Medical Journal website contains a number of letters on the topic from some very disgruntled surgeons, and is well worth a read. To quote one letter from neurosurgeon Steven A. Reid: “One wonders about the intrusion of errors on the part of statisticians on their birthdays — I’m certain the outcome isn’t as dramatic. More speeding tickets perhaps?”

And in conclusion…

Well, I’m not a surgeon, but you’ll be glad to hear I’ve booked my birthday off work anyway. You can’t be too careful, right? And if you’re reading this while in the office, well… play it safe and go read about my experience of transsphenoidal pituitary surgery rather than doing any more of that dangerous work stuff…

health · pituitary · top tips

Top Tips For Having Transsphenoidal Pituitary Surgery

Now, I fully recognise that this is a bit of a niche blog post, one which is principally going to be of interest to anyone about to have pituitary surgery. But hey! Pituitary tumors are actually surprisingly common, so there’s a lot of people out there who might be awaiting surgery. Maybe one of them is your, dear reader.

And before going into hospital for your transsphenoidal pituitary surgery, you will be anxious. You will have questions. However, I should note that many of your questions will already have been answered on legitimate medical sites elsewhere on the internet. So instead of regurgitating the same old advice (“Don’t sneeze after surgery or your brain will shoot out of your nose”, “Warning: after they’ve drilled through your head, it may be a little sore”), I have decided I will go down a different route, and write down the more obscure things that I wish I’d known before heading into hospital for transsphenoidal pituitary surgery…

Top Tips For Having Pituitary Surgery

Let me present my top tips for people about to have pituitary surgery:

1. Shave your inside elbows.

“She’s gone mad,” I hear you cry. “She’s raving. It was probably the brain surgery that did it.” In fact, this is an entirely logical step, because of all the blood tests you’ll undergo after your pituitary surgery; you’re basically going to be a human pincushion for a couple of days as the doctors seek to keep a very close watch on various hormone levels. And I mean VERY ClOSE. Both times I’ve had pituitary surgery, I’ve had blood tests every two hours for the first twelve hours after waking up, and then they gradually reduce in frequency… But not fast enough. You will literally be woken up through the night for blood tests in hospital.

This means that the post-blood-test strip of tape and cotton wool that the phlebotomist sticks over your inside elbow is going to get ripped off repeatedly, and then stuck back on. And then ripped off again, along with much of your arm hair. After the sixth time this happens in one day, you’ll be wishing you had taken my advice and shaved your inside elbows. I did this for my second surgery (having learned this lesson the hard way after my first pituitary surgery) and it made all those bloody blood tests just a little bit easier.

2. Drink enough.

If this seems obvious to you, then presumably you’re a normal person who gets thirsty when you haven’t drunk sufficient amounts of water to keep yourself hydrated. However, I am an odd sort of person and I only really notice I’m thirsty when it’s hot or I’ve done exercise (or, for some reason, when I’m pregnant!). Otherwise, I can go for hours and hours without drinking and not even notice; even back when I was a teeny child, my mum would tell me off for not drinking enough.

This was slightly problematic in hospital. Because of the risk of surgery damaging your pituitary gland and causing a condition called diabetes insipidus, your fluid balance is monitored carefully. If they believe you’re becoming dehydrated, they will put you on a drip. This is rubbish. Therefore, drink lots of water. And if you don’t like water, keep a supply of tastier drinks at hand. And by “tastier drinks”, I mean Ribena.

3. Always eat the custard first.

Hospital food gets a bad rep. The food at my hospital was pretty tasty really, and there was a good selection. But for some obscure reason, the dessert was often served before the main. If you waited for your main meal to rock up before eating dessert (like any normal person would), your custard would congeal disconcertingly by the time you got to it.
So remember: you’ve just had brain surgery. Screw societal norms regarding the “correct” order in which to eat sweet or savory comestibles. Don’t let that custard go to waste!

4. Make your visitors play musical chairs.

Again, this may initially seem nonsensical. But I was fortunate enough to have a fair few visitors in hospital after each pituitary surgery (thank you guys!), which was lovely. However, for the most part they sat in the same chair on the left-hand side of my bed. Consequently, by the end of my stay in hospital I had done my neck in, from continually turning my head to the left. It was pretty painful and entirely my own fault. Make them alternate sides. I did for my second surgery and it was much easier on the neck.

5. Get wheeled out in a wheelchair.

Because a) you’ll be feeling rubbish and won’t want to walk, and b) it’s fun!

6. Steroids + morphine = surprisingly fun.

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

7. Play your “brain surgery” card.

I regret not doing this more, in retrospect. When you’ve had brain surgery, you should be able to really milk that fact for all it’s worth. I have no doubt that there are hours of fun to be had in pretending not to recognise household objects, friends, family, political systems and/or branches of philosophy.

I remember speaking to one friend a few weeks after my first brain surgery, and I mentioned that I was always forgetting where I’d left my books. She gave me a sorrowful look and whispered, “Is that because of the surgery?”It was disappointing to have to confess to her that no, I have in fact always been that stupid.

8. Get a free pill slicer. They are awesome.

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

I managed to lose my pill slicer after a couple of months, and I was pretty cut up about it. …Geddit? Cut up?

Your top tips for having pituitary surgery

Have you had transsphenoidal pituitary surgery? Do you have any top tips you think I’ve missed? Let me know in the comments!

health · Just for fun · top tips

How To Cope When Dealing With Hospital Administration Systems

Something that no-one realises about chronic illness, until they become ill themselves, is the sheer amount of extra life admin it generates. It’s simply incredible how much time can be taken up by what should be simple tasks – booking appointments, getting hold of medication, finding out test results, getting in touch with the right person if your symptoms change… It can actually become extremely stressful and difficult to cope with hospital administration systems and the issues they can create through sheer inefficiency.

I think the worst instance of hospital administration failure that I encountered was when I was telephoned by the hospital and told off for missing an MRI appointment after my first pituitary surgery. I had indeed missed the appointment, because the letter had got lost in the post. As I had been expecting a scan appointment, though, I had actually called the hospital two weeks earlier to chase up, and been put through to the MRI department, who had told me that I was not booked in for any scans. I later discovered the hospital for some mad reason has two MRI departments, so presumably my scan was with the other department, and at no point did anyone think to tell me to check with both departments. Well done, hospital. Good use of public money.

I was first diagnosed with my pituitary tumor aged 21, which means that I’ve been dealing with the hell that is hospital admin for 11 years, the vast majority of my adult life. And that means that I have a few tips to share!

I used to think that the difficulties I encountered in getting anything done was because I was dealing with the National Health Service. I’m so grateful for the NHS funding my treatment that I would just remind myself to be grateful for it, and put up with the terrible admin, endless phonecalls and feeling of being lost in the system. Then one of my friends developed a serious medical issue which they had treated privately… And they encountered the exact same problems! It seems that terrible admin may well be a universal healthcare experience. So here are my top tips for how to cope with hospital administration, without falling into a pit of total despair…

how to cope with inefficient hospital administration systems without giving in to despair

Top Tips For How To Cope With Hospital Administration Systems

1. Be Organised

You have to be organised. Just because your doctor tells you something will happen doesn’t mean it will, without your intervention. Keep a note of what appointments you’re due to have, and if you haven’t heard from the hospital or doctor’s surgery well in advance, get in touch to check what’s happening.

2. Get Ahead Of The Game

Try to get in touch with your hospital nice and early if you haven’t heard anything. It gives you the most time to get something sorted. There’s nothing more stressful than realising that, for instance, you’re going to have a gap in treatment because the hospital has forgotten to send you a prescription or order the right tests. So make sure you chase up on things sooner rather than later.

3. Remember it’s not anyone’s individual fault

When you’ve made six phone calls and still made no progress with getting an appointment sorted, it’s incredibly frustrating. Try to remember it’s not the fault of the people you’re talking to, who are mostly just human beings trying to do their jobs in an imperfect system. You’ll get better progress by trying to be friendly and build a rapport with the staff you talk to, rather than getting annoyed.

4. Think outside the box

Most hospital departments and doctors surgeries have a public number you can call, but of course when you do, you end up speaking to someone who knows nothing about you or your issue. As a result, you can find yourself explaining yourself over and over again to different people, and feeling like you’re getting nowhere.

It’s time to think outside the box! Firstly, get Googling. In hospitals, often the consultant or head of the department you’re under will have their own secretary and you may be able to find their contact details online, or even on the letters you’re sent from the department. You may have better luck contacting the secretary if you have specific issues with your treatment or new symptoms.

Over time, you may also be able to build up other contacts. Some hospital departments have specialist nurses attached to the department who run certain tests or follow-ups. If you can find the public phone number for the specialist nurses, they may be especially helpful in chasing up on things for you. I love the specialist endocrine nurses at my hospital, they’re so lovely and super helpful.

5. Take up cathartic screaming

Ultimately, despite all your best efforts, your encounters with hospital admin systems will likely still be frustrating and inefficient. At some point, it’s best to accept this and try not to let it get to you. All you can do is try your best to smooth the process, give timely reminders, and chase up on things that should have been organised for you.

Make sure you can have a good rant to a friend or family member about how frustrating it all is. If you find yourself getting too stressed out, try to take a step back and give yourself a break. You can always start making phone calls again tomorrow.

What are your worst experiences with hospital admin? Do you have any tips for how to cope with hospital administration systems? Let me me know in the comments!

baby · child development · parenting

Choosing Whether To Use A Dummy (Pacifier) For Your Baby

Before we had our son, my husband and I went to ante-natal classes. The main thing we got from them was a lovely social circle of other expectant parents, which I think is so important as having a new baby can be quite a stressful and lonely time. But the second useful outcome was the fact that it prompted lots of useful discussions that we probably wouldn’t have thought to have otherwise.

One of these was about dummies (or pacifiers, if you’re an American reader), and whether to use them. After one class, on the drive home, when it came to discussing our feelings on this potentially controversial topic, we looked at each other and pretty much shrugged. Neither of us really had strong feelings one way or the other about whether or not to use a dummy. We concluded we would just see what happened…

How we ended up using a dummy

In the end, the decision was more or less made for us. Little Man ended up in neonatal intensive care (NICU) for several days, with a very bad case of jaundice. Dummies are commonly used in NICU, especially for premature babies, as dummy use helps to soothe babies and develop their sucking reflex.

When Little Man was first rushed into intensive care, I was asked if he could have a dummy. I said yes straightaway. We weren’t allowed to hold him as he had to stay under the phototherapy lights, to reduce his bilirubin levels, he was covered in wires and tubes with a mask over his face. So I was very keen for him to have anything he might find comforting, and agreeing to the dummy was an easy decision.

Once he left intensive care, he kept the dummy he had been given, as we could see that it was something he found soothing. And he’s used a dummy ever since.

What are the benefits?

Dummies help a baby satisfy their sucking instincts. Because I wasn’t able to breastfeed, this was especially important to us. The sucking reflex is soothing and helps Little Man fall asleep – we find that he resists sleep much longer without a dummy.

There’s also a slightly reduced risk of Sudden Infant Death Syndrome (SIDS) in babies who use a dummy during sleeping and naptimes, although the reasons for this aren’t fully understood.

For us as a family, I’d say there are three further benefits that you don’t usually read about in lists of dummy advantages/disadvantages: firstly, the dummy seems to be soothing for Little Man when he’s teething. Secondly, it’s been good for his fine motor skills as he’s always trying to pick it up, hold it, and manipulate it to get it in his mouth and chew on. And thirdly, I’ve got to be honest and say that Little Man is a VERY LOUD baby. He obviously screams when he’s upset, like all babies, but he also screams when he’s happy, or when he’s just bored. Having a dummy to hand can help to reduce the cacophony…

What are the disadvantages?

Using a dummy does have some potential disadvantages. They’re hard to keep scrupulously clean so can transport bacteria and germs to your baby’s mouth. There is evidence of increased rates of some minor infections in babies who use dummies.

It’s recommended not to give babies a dummy until they are a couple of months old and breastfeeding is well established. Dummy use may interfere with breastfeeding and is associated with a reduced rate of breastfeeding at 3 months of age. As I wasn’t able to breastfeed anyway, this was less of a concern for us, which I’m sure does make it an easier choice.

There are also concerns that prolonged dummy use can have negative effects on your child’s growing teeth.

How to decide whether or not to use a dummy?

Some people seem to have pretty strong opinions on dummies one way or the other… But then, that’s probably true on most decisions you make as a parent, from breastfeeding to nappies, childcare, tonsillectomies – you name it! Ultimately, it’s your choice (and you’re allowed to change your mind, as well). Not all babies are interested in dummies, while others really love theirs. There’s no right or wrong answer either way – the main thing that matters is what works for you and your baby.

how to choose whether or not to use a dummy pacifier for your baby
health · medication · top tips

How To Decide Whether To Have Surgery/Radiation/Take the Medication…

I’m a member of lots of Facebook support groups for people with pituitary tumours and other chronic or long-term illnesses. One of the most common types of post is people saying they’re not sure whether or not to go through with whatever treatment has been recommended by their doctor. It’s a big decision, and not something that strangers on the internet can really answer for you! But that doesn’t mean there isn’t any process or technique you can use to make healthcare and treatment decisions… That’s why I’m writing this blog.

I want to share a process I learned doing National Childbirth Trust classes when I was pregnant, which I think is a great technique to follow to help you make these kinds of decisions. It doesn’t have to be restricted to use in healthcare settings, either.

The process is called “BRAIN” and it’s an acronym to help you to remember the questions you should ask about your recommended treatment. You should consider:

  • Benefits – what are the possible benefits of this treatment?
  • Risks – what are the risks of doing this?
  • Alternatives – what alternative options are there? Why are they not the recommended option?
  • Intuition – what does your gut feeling tell you?
  • Nothing – what would happen if you don’t do anything?

I think this provides a really great format to have a constructive conversation with your healthcare provider, and to ensure that you’re fully informed about your treatment. It can be helpful to take this list to your appointments so you can work through each question when you see your doctors (if you’re anything like me, you forget what you want to ask if it’s not written down!), to inform your treatment decisions.

I’ve also written previously about my experience of pituitary tumor surgery and making the decision to go ahead with surgery (twice) – you can read about that here.

birth · health · post-partum · pregnancy · thyroid

Could You Have Post-Partum Thyroiditis? I Do!

Any regular readers of this blog will know that for a few months now I’ve had some mysterious medical issues that my doctors have been somewhat baffled by. I’ve had blood tests, an MRI of my pituitary, and a scan of my thyroid with radioactive technetium. Despite being told at the hospital that the results of my scans would be available within a couple of days, it took a month before anyone actually got back to me with the results. I tried to take that as a sign that it wasn’t anything incredibly serious, but anyone who’s had extensive dealings with my hospital’s admin systems would know that you wouldn’t want to stake anything particularly important on their effective functioning (like, say, your long term health…)

Anyway, I finally heard from a doctor, and he confirmed that they believe I have a condition called post-partum thyroiditis. Even though I already have a pre-existing thyroid condition, I’d never heard of this quite common post-pregnancy thyroid illness. So what is post-partum thyroiditis?

Post-partum Thyroiditis

What is post-partum thyroiditis?

Long story short, this is caused by your thyroid gland going a bit haywire due to a rebounding immune system after pregnancy. It typically starts with having thyroid hormones that are too high (hyperthyroidism) for a few months. Then it either just returns to normal, or the thyroid hormones dip too low (hypothyroidism) for a few months – or even permanently.

How would I know if I have it?

Post-partum thyroiditis is actually quite a common condition with around 5 – 10% of women experiencing it, although a lot of the time the symptoms are just ascribed to normal post-pregnancy recovery. Most women initially experience hyperthyroidism – symptoms can include a racing heartrate, anxiety, tiredness, difficulty sleeping, achey muscles, twitching or shaking, feeling hot or sweating a lot, and weight loss. Obviously most of those could easily be ascribed to the post-birth recovery period and/or sleep loss thanks to your new baby.

The only way to know for sure if you have post-partum thyroiditis is to have blood tests to check your thyroid hormone levels. So if you’re concerned that you may have this condition, please make sure you speak to your doctor about it.

How is post-partum thyroiditis treated?

Hyperthyroidism as a result of post-partum thyroiditis (let’s just call it PPT) is not usually treated beyond beta blockers to reduce the impact of the symptoms of fast heartrate, anxiety, etc. Conveniently, I’m already taking beta blockers as my doctors tend to prescribe them at the first sign of hyperthyroidism, as my heart loves to go too fast and will take literally any excuse to do so.

Hypothyroidism might need to be treated with replacement thyroid hormone if it becomes severe enough. I’m hoping we don’t have to go there.

How long does postpartum thyroiditis last?

How long is a piece of string? Unfortunately, it seems that postpartum thyroiditis is a very variable condition and each woman has a different experience, so there’s no way of saying how long my postpartum thyroiditis will last. It could be a few months, a year, or even longer – sometimes the side effects are permanent.

What are the risk factors for postpartum thyroiditis?

The big question for me was whether my existing pituitary condition (which affects my thyroid) creates a risk factor for postpartum thyroiditis. A quick Google indicates that I’m not the only person with a TSHoma to go on to develop post-partum thyroiditis. But because my pituitary tumour is so rare, when anything out of the ordinary happens the doctors don’t really know what to expect. However, previous history of thyroid issues is a known risk factor for post-partum thyroiditis, as is a history of auto-immune illness.

What are the implications for me personally?

It’s just a case of wait and see, and hope I don’t end up with low thyroid levels, as that could make things complicated in terms of treating it and my pituitary tumour. So please keep your fingers crossed for me!

In the meantime, I’m back to monthly blood tests to monitor my thyroid level and regularly checking in with the hospital.

Are you a postpartum thyroiditis patient in the UK? I’d love to hear about your experience! Let me know in the comments.

health

Going To Hospital During Covid-19 Lockdown

I recently had to attend hospital for an MRI scan and scan of my thyroid gland, as my doctors try to work out why I’m experiencing high levels of thyroid hormones at the moment. Although the UK has started easing Covid-19 lockdown measures, obviously in hospitals they’re still very strict about the lockdown rules, so I thought it might be helpful to write about my experience, to help ease your mind if you do need to attend hospital at the moment.

Going To Hospital During Lockdown

28 Days Beta

The hospital seemed very quiet and empty. I’m used to going there regularly with all my health issues, and it’s always a bustling place. Not currently! There were whole corridors completely devoid of human life. It was like being in a really boring zombie movie, where the zombies are quite neat and tidy and make sure to mop the floors once in a while.

photo of hospital corridor during coronavirus lockdown 2020
I am legend(ary with a broom)

In waiting areas, chairs had been moved to a distance of 2 metres apart, and where there were fixed groups of chairs, they taped off every other chair to create gaps. In one department, they had actually zoned the waiting area and each person was directed to their own personal zone! It did mean there was less capacity for waiting, and I saw one guy who turned up very early for his appointment being turned away due to lack of space, so that’s worth being aware of if you’re usually an early bird.

Everyone’s An Expert

Everyone is required to wear face coverings in the hospital at the moment. I brought my own mask (sparkly face mask by the amazing Velvet Jones Bespoke), but they were handing out free paper masks at the main entrances, and most people just seemed to be taking the free masks… Not sure that’s great for our cash-strapped NHS, but there you go.

wearing a sparkly sequin face mask at hospital during the coronavirus lockdown 2020
If you’re going to wear a face mask, it might as well be sparkly!

As a result, walking around the hospital you get the impression that everyone you see is a surgeon, because they’re all wearing surgical masks. There are a lot of sloppily dressed surgeons out there, I can tell you.

Visitor Free Since ’93

Now all hospitals are different at the moment, my hospital has started allowing some limited visiting of inpatients, but if you’re attending as an outpatient you’re not allowed anyone with you, unless they’re your carer or you’re a parent accompanying a child.

Break It Off

The food halls, shops and coffee outlets at the hospital were mostly closed. There was one coffee shop, the canteen and one mini supermarket open, both using social distancing rules. Everyone behind the counters wore masks and were behind plastic screens as well.

I had a big gap between my first and second appointments, so I was relieved that the main food hall was still open. Tables had been moved two metres apart and there was a man with a disinfectant spray constantly on hand, swooping in and cleaning tables when people left. It was very quiet though, only a few people in the whole place. You were allowed to take your mask off to eat and drink in there!

hospital dining hall during the coronavirus lockdown 2020
Table for one

One MRI, No Waiting

From talking to staff, it sounds like they’re doing fewer procedures and seeing fewer patients than usual, which is good news if you’re one of the patients they are seeing! The MRI scan lady proudly informed me that they no longer have a backlog (because they’re doing fewer scans than usual) and the technician who did my thyroid scan said it was the first time they’ve done that type of scan in three months.

That was my experience of attending hospital during the coronavirus pandemic. Hopefully it’s useful if you need to visit hospital as well. Or if you’ve had experience of going to hospital during lockdown, perhaps you can share your experiences in the comments below!

health · top tips

How To Manage An MRI Scan If You Have Anxiety Or Claustrophobia

Having an MRI scan is a really important diagnostic procedure. If you have a pituitary tumour, chances are that the diagnosis was confirmed via an MRI scan, and there are lots of other conditions that require you to be scanned as well.

I’m an old hand at MRI scans, I’ve lost track of how many I’ve had to check on the pituitary tumour in my head. I just had a scan on Monday, to try and work out what’s going on with my current raised thyroid levels.

Having your head scanned requires your whole body to be inside the MRI scanner, which can be especially daunting if you suffer from claustrophobia or anxiety, and other people usually aren’t allowed to be in the room while the scanner is on.

So how can you manage anxiety or claustrophobia if you need to have an MRI?

How To Manage Anxiety During An MRI Scan

Talk to Your Doctors

The most important thing is to discuss your claustrophobia or anxiety about your scan with your doctors as early as you can, before the day of your scan if possible. They may be able to make special arrangements for you or help to allay your fears!

Sedation During An MRI

You may be able to discuss your anxiety with your doctors, and either your GP or hospital staff may agree to prescribe a mild sedative to help you manage the MRI process. If you think this may help you, it’s important to raise it with your doctors as early as possible before your MRI scan, as it can take time to discuss, arrange and agree.

Open or Upright MRI Scanning Machines

Now, if you’re lucky enough to have private health insurance or a big wad of cash stuffed under your mattress, you may be able to access different types of scanners through private providers. There are upright and “open” MRI scanners available, which are designed to reduce claustrophobia, but these are not normally accessible on the NHS. In some areas, these types of scans may be available if a formal application is made by your doctors, but funding these types of scans is not usually considered a priority.

You should also be aware that these types of scanners usually use lower magnetic fields and thus give lower resolution images than traditional MRI scanners, so they may not always be suitable for the type of scan you need.

tips and strategies to manage anxiety and claustrophobia in MRI scans the sickly mama

Know What To Expect During An MRI Scan

If this is your first time having an MRI, it’s really helpful to know what to expect, so you can prepare yourself mentally for the experience. Most of us have seen an MRI scanner on TV, but that doesn’t give you much of a picture of what will happen to you when you go for your scan.

Some key things to be aware of:

  • MRI scans can take a while! 20 – 40 minutes is completely normal. If they have difficulty getting a clear picture (for instance, if you move during the scan), it can take longer if they have to re-do scans.
  • Linked to the above, you will need to stay as still as possible in the scanner while the pictures are taken.
  • MRI scanners make very loud, jolting whirring and metallic noises which can be a little overwhelming and don’t follow any sort of pattern or rhythm so are hard to predict. You will be given ear plugs. The sudden noises can be stressful and make you jump, which obviously makes it hard to stay still!
  • You will be in the scanner in a room on your own, however you will be able to hear the staff through an intercom. You will have a panic button to press at any time if you need it, and they will come and get you. In some scanners I’ve been in, you can see the staff via a mirror, which I think is nice.
  • You may need to have an injection partway through the scan if your doctor has ordered an MRI “with contrast”.
  • If you are having an MRI scan of your head, your head will probably be placed inside a mask, with padding, to make sure it doesn’t move during the scan. It’s not uncomfortable but can feel claustrophobic.

Non- Medical Ways To Manage Anxiety During An MRI Scan

There are ways to manage anxiety during an MRI scan without sedation or alternative scanners. Here are my top tips!

Distract Your Brain

Give your brain something to do to distract it from what’s going on. I learn poetry before a scan and then during the scan I challenge myself to remember the poems! It’s a great way to make the time go faster and take the focus away from what’s going on around you. If poetry isn’t your thing, try:

  • Mental maths puzzles – practice your times tables up to really high numbers or try long division in your head!
  • Remembering lines from your favourite TV show or film.
  • Navigating a familiar journey – give yourself a destination and visualise yourself travelling the route of that journey from your home.
  • Remembering names – people in your primary school class, old teachers, university classmates or work colleagues.
  • Anything else that challenges your brain to remember or complete a difficult task.

Breathing Exercises

It’s easy to dismiss breathing exercises as hippy nonsense, but they really can help you manage stress and anxiety. Slow, controlled breathing has been proven to affect the nervous system and brain activity, and to increase sensations of comfort and relaxation. So it’s definitely worth a try!

The NHS provides basic online guidance on breathing techniques for stress that are simple and easy to do. You can also easily find guidance and videos online via a quick search. Breathing exercises usually involve counting patterns of breath, which also works to distract you just like the suggestions above!

Close your eyes

This one seems too simple to be true, but I know lots of people swear by it! Close your eyes when you’re being put into the MRI machine, and don’t open them again until you’re done. This strategy seems to work especially well for people who struggle with the claustrophobia aspect of MRI scans.

How Do You Manage Anxiety During MRI Scans?

Do you have any other suggestions for how to manage MRI scan anxiety? Let me know in the comments!

health · thyroid

My Experience Of Having A Radioactive Thyroid Scan With Technetium

My doctors told me they wanted me to have a scan of my thyroid to try to help work out why I’m currently experiencing hyperthyroidism. I had a letter inviting me to a technetium thyroid scan, which also specified that I was not allowed to eat seafood or take vitamin supplements containing iodine for 48 hours before the scan. Easy enough! But what is it like to have a radioactive thyroid scan? I’ve written about the whole experience below…

Radioactive Thyroid Scan – My Experience

Before The Thyroid Scan

I arrived at the Department Of Nuclear Medicine at 8.20 on Monday morning, and my immediate thought was that they probably have the most badass name of any hospital department. I got signed in, and waited for my name to be called. The chairs in the corridor were all arranged at two metre intervals, with tape marks on the floor to show safe distancing.

The Technetium Injection Process

Predictably, when my name was called it was pronounced wrong, but that broke the ice with the technician doing my injections, who was lovely. I was taken to a side room to have an injection of a radioactive isotope called Technetium, which sounds like a made-up element from the Marvel universe, but is apparently a real thing. They used to use radioactive iodine for these kinds of scan, but this has now been mostly replaced with technetium, which gives a lower radiation dose.

Before the injection, I was asked some questions. The technician checked whether I have claustrophobia and whether I was able to get up and down from a couch, which I thought was good practice checking for hidden disabilities. Then there was the usual “you’re a woman so please sign on the dotted line that you’re not pregnant” and they checked my identity one last time.

The injection itself was nothing at all! They jab you with a tiny needle, flush the line with saline solution, then give you the technetium injection. Because it’s radioactive, the needle has a little tungsten jacket to protect the technician’s eyes and fingers from the cumulative effect of giving multiple radioactive injections every day! Then they flush the line with saline again.

Before The Gamma Camera Scan

Once you’ve had your injection, you wait about twenty minutes before your scan. I was put in a little side room for radioactive people to wait, because you’re actually emitting gamma radiation during this time. You would never know it at all – you honestly can’t feel a thing! The effective radiation dose of a technetium thyroid scan is about 3.2 millisieverts (mSv) – the average annual dose from background radiation in the UK is 2.7 mSv. So it sounds like a lot, but actually if you live in Cornwall, your average annual dose of radiation is 6.9 mSv, due to the high levels of radon in the ground in Cornwall. And the annual limit of radiation exposure for nuclear industry workers is 20 mSv – so when you put it in context, it doesn’t sound so bad. None of us would worry about spending six months in Cornwall! (Unless you’re a city kid, I guess…)

After twenty minutes, I was called in to have my scan, in a machine called a gamma camera, or scintillation camera. Here’s a picture of the one I was in:

gamma camera scintillation camera machine radioactive thyroid scan with technetium experience sickly mama blog

The Technetium Thyroid Scan Itself

I was asked to have a couple of sips of water, take off my necklace and face mask, and lie on the bed part of the gamma camera machine. Then the panels that you see on the left in the picture above swiveled so one was above my head and one below. They lower the panels until they’re very close to your head – the one above me was almost touching my nose!

The process of taking the pictures was weird because you can’t actually tell that anything is happening at all. There’s no noise like in an MRI scanner – you literally just lie there feeling a bit silly. Each picture took 1 – 5 minutes and at one point they reconfigured the scanner to get a close up of my thyroid gland. Then it was done!

My Experience Of Technetium Thyroid Scan

Overall, this was a really easy procedure. Anything that involves radioactive material can feel a bit scary, but it was totally painless, easy, and comfortable. If you are claustrophobic, you may not enjoy the experience of the scan itself as the machine gets so close to your face, but it’s better than an MRI scan because the machine is open at the sides, so you’re not trapped in a tube, it’s much quieter, and the scans are taken much much more quickly, so you don’t have to spend much time in the machine at all. Plus the staff were very aware that it could be uncomfortable for claustrophobic people and asked if I was okay with the scan etc. while it was ongoing.

What happened after my thyroid scan?

It took a long time to get the results of my technetium thyroid scan and get a diagnosis, but I did eventually get there… Click here to find out what happened next.

birth · health · medication · pituitary · pregnancy

My Experience of Pituitary Tumour and Pregnancy

I’ve already written about my experience of hypermobility and pregnancy (and birth!), so it feels like time to write about my experience with my pituitary tumour (pituitary adenoma).

My Experience of Pituitary Tumour And Pregnancy

Before trying for a baby

My husband and I went to talk to my endocrinologists about the possibility of trying for a baby over a year before we actually wanted to start trying (we had a wedding in between!). And it was just as well we did, because there was a lot of planning involved…

At the time, I was taking a medication called Somatuline Autogel (lanreotide) for my pituitary adenoma. There’s no data on its safeness (or otherwise) in pregnancy, and in fact it isn’t even technically licensed for my condition. I have a pituitary tumour which produces thyroid stimulating hormone (TSHoma), and they’re so rare that there actually isn’t any medication licensed for the condition. However, I’ve taken lanreotide on-and-off for nearly ten years, and fortunately it always worked well to control my symptoms.

But because it’s not known how safe lanreotide is in pregnancy, my doctors were keen to see whether I could manage without the medication during a pregnancy – or whether my thyroid levels would start going up again. So I agreed to do a trial period off the medication. All went well for a couple of months, and then I could feel my symptoms coming back, and blood tests confirmed that my thyroid levels had risen again. So, a new plan was needed.

My doctors then suggested trying cabergoline, a drug that’s used for a different kind of pituitary adenoma called a prolactinoma. They estimated to me that, based on their previous experience, there was about a one in five chance of it working for my tumour as well. And although cabergoline is not licensed for use in pregnancy, there have been more case studies etc. of women using it in pregnancy, so my endocrinologists thought it would be a better bet than lanreotide… If it worked for me.

So I have it a go… And it worked! To my surprise, it was just as good as lanreotide, if not better because it’s much more convenient. With cabergoline, I take two tablets per week (weird schedule, I know), whereas with the Somatuline Autogel it was an injection once a month which my husband had to do, and we had to keep the injections refrigerated beforehand. Plus, with Somatuline, because it messes with the function of your gallbladder, I had to eat an extremely low fat diet for 5 days out of each month, which could be a real pain when we were out and about. So not having to do that was a real bonus!

During Pregnancy

During the course of my pregnancy, I had to have blood tests once a month to check on my thyroid levels. Fortunately, they were well controlled throughout the whole time. I also had some bonus hospital visits so my endocrinologists could check up on other symptoms. Because the pituitary naturally enlarges during pregnancy, they like to check up on your visual fields to ensure that between that and the tumour, it’s not putting pressure on your optic nerve.

Planning for Breastfeeding

I really wanted to try breastfeeding, but being on cabergoline meant that could be tricky. Cabergoline inhibits the production of prolactin – the hormone that stimulates the production of breastmilk. My doctors recommended that I stop taking cabergoline six weeks before my due date, to give myself the best chance of breastfeeding, as the drug takes about four weeks to leave your system. Hopefully I would then be able to breastfeed for a couple of months before my symptoms returned and I had to go back on the medication.

So, I duly stopped taking cabergoline at 34 weeks… And then Little Man showed up at 37 weeks, rather earlier than expected! Breastfeeding didn’t work out for us. Although I made colostrum, my milk never came in, and it’s not clear whether it’s because the cabergoline wasn’t out of my system yet, or the stress and separation when Little Man ended up in intensive care for several days.

Planning for the Birth with a Pituitary Tumour

With regards to the birth, my endocrinologists were confident I could have a normal birth. Because the pituitary is involved in producing the hormones that kickstart childbirth, I did ask whether there was any reason to think that I might be less likely to go into labour naturally. But the doctors said that there was no evidence that women with pituitary tumours are more likely to need inductions.

The doctors did specifically write in my notes that I was allowed to have an epidural, as they said sometimes people can mistakenly think it’s not allowed after having transsphenoidal pituitary surgery. They also advised that there should be steroids on hand, to be administered if I experienced any unexplained low blood pressure, in which case an adrenal crisis should be suspected. Fortunately it wasn’t needed.

What advice do I have for other women with a pituitary tumour who are trying for children?

After two transsphenoidal pituitary surgeries, there was always a risk that the function of my pituitary gland had been damaged by the surgery and I might find it difficult to conceive. Fortunately we were very lucky and I was able to get pregnant. Because we knew it might take a while, we planned a long time ahead, and I’d definitely recommend talking to your endocrine team to work out a plan of action well in advance of when you want to start trying to conceive.

Trying me on/ off various treatments took over a year from when we first discussed it, due to delays from the hospital’s administration and us deciding to go back on my regular medication for the three month period of our wedding and honeymoon, to make sure I felt well for it. If we had been actively wanting to start trying for a baby, that would have felt incredibly frustrating and slow. It was frustrating enough even when we knew we didn’t want to start trying until after the wedding!

Do you have any experience of pregnancy and birth with a pituitary tumour which you can share? Let me know in the comments!

my experience of pituitary tumour in pregnancy and birth the sickly mama blog adenoma