Happy birthday Gwen 2.1

22/03/2017: Another year to mark my good frenemy, Ralph. It’s been three years!! Three!! It’s nice to look back on this blog and see what life was like over the past three years; brains don’t like remembering bad stuff, so they blank it out. That’s why women are happy to go through pregnancy and labour again! But sometimes it’s nice to look back on when times were hard – that way you appreciate it when times are good so much more. The year has been a bit up and down, but thankfully I have only ended up in hospital for planned things – check up MRIs, follow ups with my neurosurgeon and neurologist and so on. I was reminded of how fortunate I am yesterday, on the eve of my “AVM-versary”. I was speaking to a patient on my ward and he was very obviously stiff and paralysed on one side. Without me asking, he explained that he had a brain haemorrage in the 90s, and he was now permanently in a wheelchair and disabled. Now as you can expect, I immediately have a heightened level of empathy for any patient that tells me they have had a brain haemorrhage. But this man particularly stuck with me, as a sad reminder of what my life might have and all that Ralph could still take away. Even if you haven’t had an earth shattering life event, it is so important to remember those little things in life you can be grateful for. In fact, if you are perfectly healthy it is even more important to be grateful. For the fact that you don’t have to think about how to socialise without being flooded by sensory stimuli. For the fact that you can talk to somebody in a noisy room and focus on what they’re saying. For the fact that you can still spontaneously decide to stay somewhere different without worrying about missing medication. For the fact that you can read something and listen to something at the same time. Quite frankly, for the fact that the biggest concern of your day might be how you’re out of milk and can’t have tea.

(To be fair, that last one is a pretty big concern of mine. I need to go shopping…)

perspective

As usual, life has been getting in the way with frequent blogging. So here is a round up of the events of the past 365 days. Further blog posts will be coming to expand on them!

  • I passed my 4th year exams (yay!) and went on an exciting elective doing neurosurgery in Vietnam and Australia, doing activities I never thought I could do (cliff diving – but don’t tell my neurosurgeon!)

    20160816_032856

    Here’s a picture of me pretending to be a neurosurgeon in Vietnam

  • I entered the final year of med school. Eek! Exams were taken and job applications were handed in. I am also on the committee for my university’s Neurosurgery Society. More on this later.
  • I got a place on Team England ParaCheer!! I’ve spoken before about my love for cheer; now I have an amazing opportunity to represent England at the cheerleading worlds on the world’s first integrated disabled and non-disabled cheer team. Watch this space!
  • Seizures started again after being quite well controlled, and epilepsy got worse. I was warned this might happen after gamma knife so this is what I thought. My neurologist agreed with me and increased my dose of anti-epileptic drugs. It’s working so far!
  • In December, I had a one year post-gamma knife MRI scan.
    • Then in February, my neurosurgeon updated me on the results (hence why I am Gwen 2.1, not Gwen 2.0. Still beta testing Gwen 2.1 though). Ralph is “slightly less obvious”. But definitely not worse!
  • Temporarily became paranoid that I was having another bleed. The paranoia about headaches and bleeds never truly goes away, especially when the headache was so bad it made me cry and a few days later I had similar symptoms to the last time I had a bleed – where everything tasted sweet. (Thankfully, this resolved after a few days).
  • Been allocated my deanery – now to rank the neurosurgery jobs as high as possible so I can get them, fingers crossed!
  • Accidentally (through no fault of my own… ish) went through sertraline withdrawal. This. Was. Awful. 10/10 do not recommend.
  • Last but not least… on the very day of my “AVM-versary”, with the Neurosurgery Society at uni I am helping to host one of our biggest events of the year – “Women in Neurosurgery”. I am finding this pleasantly fitting, considering how I am a woman who wants to be in neurosurgery (but not as a patient).

All in all, I’m happy to say that I’m gonna keep on keeping on. I only have a few months left of med school. Soon I’ll be closing this chapter of my life, and starting the next one with a new title, in a new city. To be continued….

Accurate picture of my reaction to having to take finals in a few months

My 2nd second birthday

I’ve decided I’m going to allow myself a bit of artistic license and give myself a second birthday.

Or rather, I’m making another one official; Ralph’s birthday.

22nd of March, 2016. My 2nd, second birthday. Ralph’s 2nd birthday. Exactly two years ago today, Ralph exploded into my life… quite literally.

I can’t believe two years have gone by already! The searing rip of pain ricocheting through my skull felt like it was yesterday. The confusion and memory loss felt like it was yesterday… It probably was, I have just come to the end of term after all. Time really, truly has flown. When I was first told I had to take a year out, I was devastated. For some reason, a year seems like forever in January, but it seems like nothing in December. This time last year I was incredibly grateful I made it through the first 12 months post-rupture (during which I apparently had a 5% chance of rupture. That’s 1 in 20 people.). Fast forward by another year and my whole perspective of life has changed. I no longer am a passenger of life, waiting for the year to fly by. I am now the driver of my own life; life is too short to passively sit by and watch it!

My hope for this time next year is I will discover the outcomes of my gamma knife surgery, which I had on 02/12/2015. In my previous post, I had just received a confirmed appointment for my GK treatment. I am now 3 months on from having received the “surgery”. It technically doesn’t involves any knives or scalpels, but theoretically the procedure would do the same thing to my AVM, just without physically cutting into me. Which means no general anaesthesia – everything is done under local. Isn’t science amazing?

The big day loomed and we crawled into NHNN for the 7am pre-op assessment start. The combination of an early start, plus no food, and importantly no tea wasn’t great, admittedly. I may or may not have become a bit terse when the HCA doing my pre-op obs managed to do them wrong…. But anyway. I was called to go down to the gamma knife centre, where the torture preparations began.

Gamma knife is essentially a giant hairdresser’s helmet thing around your head, shooting gamma radiation at the lesion – be that a tumour or AVM. It’s a safer way to do the same job as traditional “cutty” surgery, but with less recovery and inpatient time. However, in order to do this, a metal frame has to be attached to my head to make sure it stays perfectly still, otherwise the radiation might damage other important structures… like… y’know… the brain. On arrival I was whisked into the prep room,  where trolleys were gathered and many industrial looking tools spread across them like a platter. I was invited to sit in what looked like a hairdresser’s chair, and my team placed a big plastic hemisphere with holes in it over my head and started marking out points. It really did feel like I was getting a hospital perm or something. The needles were busted out at this point. With the plastic helmet still being held, local anaesthetic were injected into the four points where they would be screwing the metal frame into my head – two on the front, two on the back. I maintain that local anaesthetic injections are always FAR worse than the actual procedure, and I was no stranger to the sharp tingle of the injection of 1% lignocaine. For some reason though, this time it was much more painful. Perhaps it was the anticipation of the procedure, or the fact that my neurosurgeon was waiting next to me, wielding a pretty large screwdriver. The two sites on the front of my head weren’t too bad, I can’t say the same for the back two sites however! Once a few minutes had passed for the anaesthetic to take effect, the carpentry began. The metal rods to which my frame would be attached were slotted through the holes in the plastic perm helmet and my neurosurgeon started screwing them in using her screwdriver, and brute force. The threads in the pins were simply applied with enough pressure to pierce the skin and drill through the muscle. This part wasn’t too unpleasant; the anaesthetic had done its job after all. What I wasn’t prepared for was the immense amount of pressure that was being created within my head. The pins were being screwed in so tightly on both sides, it felt like my skull bones were being made to meet in the middle. My skull felt like it was being squeezed to pop. Here’s a visual representation of what my head felt like:

I assured that this was perfectly normal, however, and the feeling would subside once I got used to it. It didn’t. It then got worse when they tried to put the pins in the back of my head in, and I discovered that the anaesthetic hadn’t worked. “Oh, you should feel some pressure, but you shouldn’t feel any sharp pain” they said to me. I replied by telling them I could feel the screw’s threads piercing through the full thickness of my muscle. More anaesthetic was applied…. and still didn’t change anything. Seeing as they had given me twice the normal dose, I unfortunately just had to grin and bear it. Or, as you can see in the video of them installing the frame…. grimace and bear it.

When the pins were all installed, my perspex helmet was removed and replaced with a metal one, which was attached to the pins. I don’t know if you’ve ever had a metal weight attached to your  head, but it really throws your balance. I felt a baby trying to learn how to hold its head up again. By far the worst part, however, was the fact that my head still felt like it was being crushed. To speed up the morning, I was sent to get my pre-op scans as soon as installation was finished…. without waiting for a porter. Which was fine, I could still walk (clutching on to a nurse) and the scanners were just around the corner, but I resembled Bambi somewhat as I tried to adjust to a new form of weight distribution. When sat waiting to go in for my angiogram, I had quite a bit of attention from passing patients (who had clearly never seen somebody so young as me wearing a metal frame) and passing doctors (who had just never seen a GK frame before). One doctor told me I looked like a superhero, and asked me what my superhero name was. I was in too much pain to answer, but I appreciated the distraction.

Within 20 minutes I was slotted into the angiogram table (no seriously – my frame was fixed to a bracket at the head of my bed to stop my head from moving), getting more local anaesthetic injected into my groin, and having catheter inserted into my femoral artery. This hurt a lot more than last time; apparently having had three previous angiograms makes your femoral artery scar quite a bit. But the rest of the angiogram passed by uneventfully. I couldn’t believe how I literally couldn’t move my head; I had to rely on my eye movements to see anything apart from the white square of the X-ray box. It is quite disconcerting I must admit, only being able to look up and not being able to move your head.

Once the angiogram was done, I was wheeled back in a bed to the recovery room in the gamma knife centre. This was the frustrating part; after an angiogram you are supposed to lie flat for 6 hours. As I had two metal rods in the back of my head…. instead of resting my head on the fluffy NHS pillow, I was resting on two pointy bits of metal. The full weight of my head, on two bits of metal. Really not great. Thankfully the nurse that was with me was very patient – as I was finally allowed to eat and drink, she helped feed me croissants and fed me tea through a straw. And put up with me having to use a bedpan a few times to urinate…. I maintain that no matter how little shame you have, using a bedpan is always an embarrassing affair. Many hours (and selfies – I did look like Iron Man after all) later, my team came in and told me they had finished plotting the coordinates for the radiation and it was time to start the radiation.

The gamma knife machine awaited me. My bed was wheeled into the room and I was transferred across to the gamma knife bed, bolted in to the table and slide into the machine. It looks like a bigger MRI scanner, and this is where my favourite perspex perm helmet was located. The team returned to their office and let me get comfy on my lonesome before the treatment started. They turned on the “Gamma knife” playlist on my phone (which contained appropriate songs such as “Radioactive” and “Mack the Knife”) and… three hours later we were done.

Next came the part I was looking forwards to the most; the removal of the frame. Surprisingly, this was more painful than putting the frame on. Once all of the pins had been released and the frame removed, my head immediately felt like it was imploding once more. The pain was so intense, it made me whimper. It made me cry; the pain I felt inside my skull felt exactly like the pain I had when my AVM ruptured. Memories flooded back and paranoia set in – had I come this far just to have another rupture? Thankfully, the answer to that was no, and I was given some paracetamol to dull the pain. I said goodbye to the lovely gamma knife team and was transferred upstairs to a ward to wait out the pain.

Once I was on the ward, we bumped into that doctor from earlier who asked me what my superhero name was. He had thought of one for me: “The Gamma Knight”. How perfect! I spent the next 24 hours or so sleeping and having seizures – 14 to be exact. The team the next day were quite alarmed to hear this and sent me for a CT scan, which thankfully was normal. Interestingly, the seizures stopped exactly 24 hours after I came out of the GK machine; I had been warned the first 24 hours were the peak time to have post-op seizures so I guess that made sense! Satisfied that my brain had not been reduced to mush, I was discharged that day to my bed.

I must say, having lots of radiation shot at your brain makes you really tired. And headachey. And nauseous. But I guess all of those are preferable to actually having a scalpel to your brain! I had a follow up appointment with my neurosurgeon last month; as I have not had any major side effects except for the ongoing fatigue, I am being left alone to recover stress-free. I will have a follow up, one year post-op MRI in December 2016 and a follow up outpatient appointment in February 2017 to review those results.

So hopefully by this time next year – Ralph’s 3rd birthday – I will be finding out if the GK has worked or not. I look forwards to it!

 

When one door closes, another opens

“Cliche” – a phrase or opinion that is overused and betrays a lack of original thought. Sadly, cliches become cliches for a reason – because they are more often than not true, and the easiest way to concisely portray something. That is certainly the case for the title of this post – my life has been a series of doors closing, and doors opening. I’ve had to learn that new doors won’t spontaneously swing open or even appear, unless if you’re very lucky. Sometimes you need to look for another. And sometimes, just like  the front door of my student house, a lot of fiddling is needed to open it.

Forgive me for being self-indulgent, but this post is going to be about my achievements since the 22nd of March 2014. About my open doors. If you can bear with a slightly smug recollection of the past 18 months, do read on. If not… Well I hear there are some good cat videos on the internet these days. This is one of my personal favourites: https://www.youtube.com/watch?v=k6ZPvNXiip4

My rupture happened on the 22nd of March 2014, during my intercalated BSc (in Neuroscience! How very ironic). At this point, all I had left of my BSc were my exams and my dissertation. Despite my best efforts and protests, it soon became apparent that I would have to postpone those, and the completion of my BSc, to May 2015, giving me essentially a year of… waiting for exams to come around. It wasn’t fun. I was advised by my team not to even attempt revision until October 2014 at the very earliest, so naturally I tried to start earlier. And failed miserably. But by the end of October 2014 I had tentatively started going back to my part time job – massive confidence boost – and come November, I made my first foray back into the world of academia.

When you have a brain haemorrhage the reaction of those around you is, naturally, “Oh my gosh! But doesn’t that control your arms/legs/vision/speech?”. People always ask me about tangible, physical effects. About obvious effects, that you might see if somebody broke a bone, for example. But nobody actually thinks about what controls the mind. It’s a bit of a paradox really, that the mind controls the mind. It’s the only organ in the body that is self aware, and we still don’t truly understand it.

So what happens when you – in essence – break the brain’s bone?

My stroke was mostly in the temporal lobe of my brain, which is the part that controls cognition and memory. I didn’t quite appreciate the loss of this until I tried to go back to revision and found that practically my entire memory of my BSc lectures had been wiped. It was quite surreal, opening the extensive notes I had written in the months prior to 22/03/2014 and having physical evidence that I was there, that I had absorbed and learned this information… yet having absolutely no recollection save for infrequent, brief flashes of memory. So I started again. I taught myself my BSc in Neuroscience from scratch. I sat and arduously watched every lecture that had been recorded and put on my university intranet, and completely filled three A4 notebooks with my notes for it. I am not for one second going to pretend it was easy, or smooth. Once upon a time I was able to revise 7, maybe 8 one-hour lectures in one day. I was lucky now if I managed to do a one hour lecture over two days. I even had the memory of my lab work wiped, which was the basis of which my dissertation had to be written. When you face a whole years’ worth of lost work, knowing that your ability to learn is damanged…. It’s petrifying, it really is. But at the end of the day you can’t put off the inevitable. After what seemed like forever (but was, in reality, seven months) I had finished all of the taught content of my BSc. Exams loomed over me. But with the help of my neuropsychologist and setting small, manageable goals the exams finally felt like a hill instead of the Everest that they were when I was first discharged from hospital. I sat the exams (and thankfully had an extra two hours per exams – yay for cognitive deficits!), pleasantly surprised at how straightforward they were. Sadly I couldn’t celebrate just yet – I still had a week left to finish and hand in my dissertation – but in due course that was completed and I could finally relax.

I spent June of 2015 working, making back the money I had lost on my year out. I spent July of 2015 reaping the efforts of my labour in the past year. July 2015 was a very good month.

Most university students have that universal, shared experience of the terror of results day. Opening that brown envelope to find those three (or more) letters that determined the start of your adult life. I naively thought when you go through that experience once, you’re prepared for the subsequent ones. I was wrong. 24/06/2015, 4p.m. – BSc results day. I started fervently refreshing the results webpage, aiding the thousands of other students who ended up crashing the system. I made tea. I drank the tea. I made more tea, still refreshing the page in the hope it would be revived (like I was by the tea). And suddenly, it was. I had always said to myself after finishing my exams that I would be happy with a 2:1, or even a 2:2 – so long as I passed my BSc and all the work wasn’t in vain.  I held my breath as I clicked on the “View degree award” link.

It had to be a mistake.

I double checked. And got my boyfriend to check too. It wasn’t a mistake, or a typing error. After the 21st of July 2015, after my wonderful graduation ceremony, I was the proud, proud owner of a BSc in Neuroscience with First Class Honours!!!!! There are no words to express the elation I felt in the following weeks.  The best part for me, was the knowledge that getting a first in itself was an achievement, meaning others could appreciate this even without the knowledge of my backstory.

Graduating with a First!

Shortly after my graduation, I attended a national conference to present a poster on the work I did during my BSc project. By being selected to have a poster there, I was automatically entered into the undergraduate competition for best poster, presentation and abstract. My supervisor was fairly confident and spent most of the conference showing his peers how excellent I was. I personally wasn’t so sure – the quality of the other undergrad posters was very high. But my confidence was bolstered when during the poster presentations I had several attendees asking me if a) this was my PhD project and b) why I hadn’t published it yet. I was even asked by once of the leading researchers in the field of my project if I wanted to come and work with him at his lab! I suppose that’s the scientific equivalent of being headhunted. Lo and behold, my supervisor’s faith was rewarded as it was announced at the end of the conference that I had been awarded the one of the four “best undergraduate awards”!! My reaction was very much the same as with the BSc result – shock, disbelief, then elation. Upon returning, I was greeted by the news that my supervisor and post-doc had decided we should publish my work, and that I should be first named author. What a great end to the two year long saga that was my BSc! (And to any non-medics reading this, intercalated BScs are usually done in one year, not three!)

Winning the undergraduate award at the BAP conference

 
The rest of the summer was spent enjoying what would be my last university summer holiday. I travelled to Sweden and Menorca. Oh, and got engaged (!!). Standard holiday activities really. As I closed the door to the end of my time out (and what a fantastic way to end what started as a truly awful year!), the door to the start of my return back to medical school opened. But more on that in the next post.

 

He did good with the ring

 
I’ll close this post with a final bit of good news, the best news of the year so far. 20 months since my rupure, the door to removing Ralph has finally opened – my neurosurgeons have decided to give me gamma knife radiosurgery! The date has been confirmed as the 2nd of December 2015 and, like with all my previous planned hospital admissions, I await it with a mixture of excitement and curiosity. Watch this space for an update on what it’s like to have your brain shot with radiation!

Tissues for issues, tears for fears: Neuropsychology part 2

Following my first neuropsych assessment, it turned out that I had actually lit up a lot of the depression screening questions. Having studied depression, I wasn’t surprised – clinicians tend to look out for reduced concentration, fatigue and lack of energy, reduced appetite, short attention span and low mood. Which, unfortunately, is exactly what happens to you after you’ve had a brain haemorrhage. For the non-medical students reading; please be aware that depression is a very multifactorial condition and manifests in more ways than just “feeling sad”. This is very important. Never, ever say to anybody “but you don’t seem sad, therefore you can’t be depressed”! 

Anyway, back to our regularly scheduled programme.

Armed with a strong feeling of exasperation that I didn’t need therapy, I was just suffering the effects of an SAH, I turned up to my first session of four and was greeted by a pleasant woman, different to the doctor who had assessed me. To keep a long story short, I spent most of the session crying. Telling my peers about my condition and what had happened to me seemed easy, almost like a joke. “I had a stroke! Isn’t that crazy?!” But for some reason, talking about my story to an somebody in a position of importance – whether that be the finance officer at my university, student finance, or my new therapist – seemed to release some deep seated, subconscious anguish. I suppose in a way, talking to somebody that wasn’t part of my social circle made it “official”, and made it real. Perhaps I did need therapy after all.

I left my first session feeling numb. Neuropsychologists seem to know how to ask very hard questions. I found the technique quite interesting, actually; I was not asked pointed questions that elicited a single word answer, but rather asked questions that made me think and essentially made me say out loud my own issues and answers. In a way, it was helping the patient help themselves to deal with their concerns. My neuropsychologist commended me on my insight and progress, and was particularly impressed on the steps I was taking to try and ensure a complete recovery, physically and psychologically. She ended our first sesssion with this simple question: “What goals do you want to achieve out of these sessions?” It took me by surprise. I had never considered this. It’s not like an outpatient’s appointment with my surgeon, where essentially the unspoken, fairly obvious goal was to eradicate the growth and figure out a treatment plan. This was deeper. After some thought, I simply replied with “Acceptance”. To which she said “That’s a very big word, and a very big goal.” I left, full of thought over what we had discussed, and went to the toilet. Where it completely overwhelmed me and I spent a good ten minutes or so sobbing to myself in the cubicle.

The next three sessions went by with a similar format, albeit with fewer toilet-crying incidents. We had planned the sessions to be interspersed with my exams, as I had officially entered exam season so I could finally finish my BSc. Each session became easier as I got used to the novel interaction of somebody asking very stark, probing questions that made you consider parts of your emotional state that had never been brought up before. My goal was acceptance: To accept that my brain will never return to the state that it was before March 2014, and to be okay with that fact. This goal seemed more manageable after I had taken the first of my three BSc exams, which I had approached with great trepidation. I had no idea what to expect from my first exam. I was rife with paranoia that my concentration would fail, the mental strain would make me to physically fatigued to continue, or I just would simply not remember the content that I had been revising solidly for the past year. However, I came out of the exam filled with the realisation that actually, I could do this. Despite receiving an extra two hours per exam, I actually finished at the same time that the “normal” students would have had to finish by. To me, that in itself was a massive achievement.

It’s funny how a life changing event and subsequent therapy reorganises your priorities in life. There was a moment during the revision period of May 2015 where it struck me that I was now able to revise whilst listening to music. A small feat, yes, which many people might take for granted. But I had not been able to juggle the stimuli of two different senses at the same time for well over a year. You learn to appreciate the little things in life, the small miracles.

It became apparent to me after my first therapy session that whilst many people asked me how I was physically, very few had actually asked me how I was coping mentally. Perhaps this is due to the stigma that still surrounds mental health today, or perhaps it’s because some people don’t want to ask because they’re afraid they’ll feel uncomfortable with the answer, or not know how to respond. Even I have been subconsciously affected by the stigma of mental health: after my final therapy session, I thought about writing this blog post, but thought “do I really want everybody to know that I’ve been through therapy?”.  Then I realised: Why should that matter? Why am I so open about blogging about my physical state, but not my mental state? This kind of subconscious attitude that has infiltrated through our society is exactly what contributes and fuels the stigma of mental health.

So I’m posting this, and exposing myself when I was quite vulnerable. I hope you’ll forgive me, and not feel too uncomfortable whilst reading this. Next time you see a friend who went through something terrible, be it health related or otherwise, ask them how they are. And just listen. Sometimes, that (and a hug or a cup of tea) is all that is needed.

(P.S. My therapist concluded after our sessions that I did not have depression, but rather just a normal reaction to something terrible.)

The irony of fate – happy anniversary to Ralph!

A year ago today, my life changed.

A bit dramatic I know, but what happened exactly a year ago was dramatic. I approached today’s date with trepidation;  at some point I was told the risk of having a first rupture is 1% per year. Once you’ve had your first rupture, the risk increases to 5% within the first year after. The closer it got to today, the more I worried with any headache, or slight funny feeling. Which I was not without, but I think it’s in part my own anxiety psyching myself out and manifesting in a physical way. The past year has been incredibly hard; the headaches, the fatigue, the brain fog, the long nights of crying hysterically, the mood swings that lead to hysterical laughter, the side effects of steroids, the seizures, the cognitive impairments I’m now left with, the life changes, the sensitivity to stimuli, the impairment to my processing speed, the reduction of my brain to an “average” version of what it used to be, the disappointment at interrupting my studies, the battle with different funding companies. Approaching a year off for recovery seemed like a monumental task – it’s funny how at the beginning of a year, it seems like forever. But at the end of it, it always seems like nothing.

But no matter. I made it. It’s officially been one year! A whole year since Ralph came into my life! Well I suppose technically it’s been 22 years and a few months. But a year since he made himself known. Usually you celebrate anniversaries with a significant other with some form of meal, or a gift or something. Does Ralph count as a significant other? I suppose he is a significant other part of me. Regardless, this year is coming to a close the same way it started; with cheer. However on THIS 22nd of March I will not be training, just watching!

Taking a year out forces you to rest. It forces you to relax. But most of all, it forces you to reflect. Perhaps “R&R” should be renamed to “RRR” – rest, relax and reflect. Growing up, lots of strange things happened that never really had an explanation. Sometimes I would watch a programme and, in the advert break, completely forget what it was I was watching. I do remember joking with friends that I had short term memory loss. I now realise, many years later, why. Whenever I climbed stairs too quickly, I used to get incredibly light headed and dizzy to the point where I would almost pass out – but I always put that down to my low blood pressure. However, the AVM would definitely be another factor. The headaches I used to get, I guess they have an explanation too now. So did the weird tingling I used to get on one side of my body (that, when I was on my neurology rotation, made me think I had multiple sclerosis for a brief period of time – but again I laughed that off as med student syndrome). The weird “woosh”ing noise I used to hear in my right ear whenever I put my stethoscope in my ears (for the medics reading this, it’s called “pulsatile tinnitus”. It’s like hearing a bruit or an ejection-systolic murmur, but very specifically in your ear). I now realise that was actually me hearing blood flowing through my AVM. The entire left side of my body is about 1cm longer than my right – so much so that I get hip pain if I don’t wear my special insoles in my right shoes. Is it possible that, as I have had an AVM since birth, my AVM has either stunted the growth of one side of my body, or accelerated the other side? This last point is highly unlikely, but forming conspiracy theories is fun.

Never did I realise waking up on that sunny Saturday morning how small decisions would change the course of the year. It’s like butterflies and hurricanes.

I feel the lyrics to this are very relatable right now.

First and foremost; if I hadn’t have filled in for that missing team member last year, and fallen, would I still have had a rupture? My surgeon assures me it was going to rupture that day anyway, but it’s still easy to think “what if”. If I had chosen to go back to my student house, instead of back to my boyfriend’s with him, would I have gone to hospital, or just collapsed in an empty house and been found by my housemates when they returned late that day? If I had been in my student house and gone to hospital, I would have ended up at King’s College Hospital – where many of my peers were at the time doing their neurology rotation and would have been the ones to clerk me and assess me. When I myself was on my neurology rotation, I shadowed a neurosurgeon every week, observed his surgeries every Thursday. The first neurosurgery I ever saw was a subarachnoid haemorrhage – the same thing I had. And every surgery I saw was related to…. guess. Yes, AVMs. For the neurosurgeon I shadowed was the AVM specialist at King’s. Meaning if I had indeed ended up in KCH, he would have become my consultant. I spent a lot of time thinking about things like this, how small decisions made big impacts. And it made me realise the irony of fate.

Most people will adhere by the old adage, “Everything happens for a reason,” whether that belief be of a religious or secular basis. The more time I think about my situation, the more I can’t help but think I am definitely being signposted along some path. From the age of 6, I knew I wanted to be a neurosurgeon; my mom swears by it that I was a precocious little girl that had decided the she would cut brains for a living (and in her spare time be a ballerina, a farmer, a policewoman, a vet and an artist). But specifically, a neurosurgeon. I apparently even knew the word for it, as opposed to saying “brain surgeon”. And now I have a neurosurgical condition myself, which I am fascinated in! The weirdest part I still feel is shadowing the AVM consultant. Out of all the neurosurgeons at KCH, I just so happened to have asked the one that specialised in the condition I would later find out to have. Even within neurosurgery, before discovering Ralph, I was beginning to want to sub-specialise in neurovascular. I have a poster of the blood supply to the brain in my bedroom, the same one that adorned the theatre I had my angiogram in. The more I think about it, the more I want to specialise in neurovascular conditions – especially AVMs – even more. After all, how many neurosurgeons can say they have personal experience with the condition they are treating? This was cemented by a conversation I had with my surgeon back in May 2014, during my second hospital admission:

Me: “I get headaches all the time now. How do I know if the headache is just a headache, and not another bleed?
Surgeon: “To be honest, I don’t know. I can tell you what the textbooks say, but you already know that. I’ve never experienced what you’re going through, so it’s very hard to say.”

That precisely sums up my motivation to get through the past year, and whatever the future years are going to throw at me. One of these days, I want to become the AVM consultant who can reassure their patient that they had managed to get through having an AVM and carry on to lead an awesome life.

So happy anniversary Ralph. Here’s to a year together in my new life, and to hopefully not many more!

 

Movin’ on up

I took a bit of a hiatus from blogging during Christmas – so first and foremost, Merry Christmas! I hope the break was a pleasant and food filled one.

In the run up to Christmas, I’ve had so many updates to my health in about the space of a week that it’s just been a bit overwhelming to deal with. Each deserves a separate blog post of their own, so watch this space to hear about the results from my neuropsychological testing, my seizures and whether or not I have epilepsy!

However, this post is dedicated to the most pressing update. A few weeks ago at the beginning of December (the 8th of December, to be precise) I called my neurovascular nurse to update her on how I had been doing, and find out what the next course of action was, as I had had no contact since my birthday present back in October. We discussed how I had been doing and I gave her a brief breakdown – fatigue was getting less and less, energy levels more and more, I had gradually gone back to work and started studying again. She was pleased to hear I was trying to get back on track with life and gave me yet another present – her blessing to return to the final part of my life that was still on hold.

Not a pom-pon in sight.

Not a pom-pon in sight. Taken from http://just-werk-it-girl.tumblr.com/

I had to make doubly sure. And triple sure. “You do know that cheerleading isn’t about waving pompons around… it’s a physical activity with inversions and high cardiovascular activitiy and potential falls, right? It’s almost like gymnastics. I could fall and hit my head.”

She was aware. She knew. And she said it should all be fine, now that my varix was gone. The collapse of my varix meant the collapse of most of the risk I was carrying around in my brain.

“Just go back gradually. If anything gives you a headache or makes you dizzy, stop and stay at that level. And try to avoid any sudden movements of the neck that would affect the vertebral arteries. That’s the only thing that would risk increasing the intracranial pressure in your head, which would increase your risk of rupture.” (To the non-medics out there, that basically means no whiplash-type movements… to the cheerleaders out there, that basically means no snapping in baskets).

So that was the final piece! I could go back to training! Over the past 9 months I had become so frustrated at first my physical limitations to physical activity (nobody tells you just how fast much your muscles waste away when you’re lying in a bed, recovering) and once the physical limitations started to dissipate, the mental limitations. I immediately made plans to go to an open gym session that night to celebrate! The green light from my nurse did remove some mental limitations, although I still found myself hesitating a lot more than usual. Which is understandable, really. Nevertheless, words cannot express the joy I felt at finally getting ALL aspects of my life back on track.

Example of a cerebral (brain) angiogram. This is a normal one. Ergo it is not mine.

My nurse had also given me a second point to be excited about – my team had decided they needed an up-to-date image of what was going on in my head before we start to think about gamma knife. So I was to have an angiogram (an imaging procedure that looks specifically at the arteries in my brain) “at some point between Christmas and January”. Whilst it was great that I had some form of progress with Ralph, the vague timescale meant that I couldn’t plan anything. I had no idea if I would be here or with my parents for Christmas, where I would be for New Year’s, where I would be for my boyfriend’s birthday (which fell exactly halfway between Christmas and New Year… and is actually today!)… And the other factor was, once I had the angiogram, I would need somebody to drive me back from the hospital as walking is prohibited for the first 48 hours or so.

My hospital letter arrived a week before Christmas and informed me my angiogram would be on the 30th of December. Perfect timing! This meant I could spend Christmas with my parents, my boyfriend’s birthday with him and New Year’s (voluntarily and medically) confined to the sofa. Which is what I had hoped for anyway. Despite having already had 3 angiograms, I also received a handy “What to expect when you’re expecting” sort of booklet, except for angiograms. For those who don’t remember or haven’t yet googled it, the reason why caution has to be taken with walking after an angiogram is because a catheter (a thin plastic tube) is inserted into my femoral artery (the main artery that supplies the leg) and is threaded up to my brain through the arterial system. Yep, they get to my brain from my leg/groin area. Cool, right? Whilst it does give highly accurate, real time images of my cerebral circulation, the fact that they have to leave a puncture wound in a major artery which is likely to bleed out unless if proper care is taken…. You get the picture.

The only thing I’m not looking forwards to about this angiogram is the fact I have to be in the hospital by 8am. Yawn. The previous three times I’ve had an angio, I’ve been unconscious – the first two times because the combination of my stroke and the pain medication knocking me out, the third time because it was actually an operation. Hopefully this time I’ll be conscious and I’ll be able to frustrate the team with my genuine interest and questions of the Circle of Willis (the main set of blood vessels at the base of the brain) and other neurovascular structures.

I’ll end this post with a song that I feel reflects my current mood. I’m movin’ on up!

‘Cos I’m moving on up. You’re moving on out. Movin’ on up. Nothing can stop me.

Happy birthday to me!

I’m finally back on track in terms of time! No more retrospective blogging 🙂

Most of the summer, my life felt rather nomadic, what with packing and unpacking for the hospital, moving out of my student house, moving out of my family house, going on holiday… life was moving a lot since March despite my health situation being at a stand still. I knew I had an MRI coming up in early September and it was nice to come back to my new “normality” of hospital appointments and scans. MRIs usually took between an hour or two so I came prepared… and was very surprised when I was told after 15 minutes “Okay we’re all done now”! It shocked my boyfriend too, who had come along to keep me company and had barely completed a level of Bubble Witch Saga when I returned. My parents suggested it must have been good if they didn’t need any extra scans, something that I had thought of and agreed with. I’m now writing this roughly 6 weeks later and there has been complete silence from the hospital since my MRI. I expected not much from the first week post-scan, as they would have to talk about me at their multidisciplinary team meeting (MDT) to discuss results and further action. At 2 weeks post-scan, I had started becoming tetchy, especially because I had just experienced my first lucid seizure – which I will write about in a future post. 2 weeks soon turned into one month, then 5 weeks, then 6 and I still hadn’t heard anything. I was very tempted to call my specialist nurse over this time period – not only to ask her what was going on, but also to inform her that I had been having some temporal lobe seizures and that I was returning to work. My calls went through to answerphone and I decided not to pursue it; after all, I was feeling great. And there was the old adage – “No news is good news”.

I did wonder, however, if a letter had been sent to an old address. As I had moved house twice in the last month many addresses had changed. I asked my old housemates if any “non-descript envelopes” had arrived addressed for me, but the answer was no. I got to a point of serene indifference about contact from the hospital. Until I came downstairs this morning, sifted through the usual pile of bills and was greeted with a non-descripted envelope with my name on it. My heart stopped. It was a hospital letter. I started at the familiar font my name and address had been typed out with (it’s funny the little things you notice), the post-mark stamped in that cornflower-blue ink, turned it over and ripped it open. I was so excited to finally have this hallowed contact from the hospital that I couldn’t unfold the letter properly, and when I did I had to read the words several times to make sure I had taken it in correctly:

The best birthday present ever?

The best birthday present ever?

OH MY GOSH!!!

“The varix associated with her AVM”…. This varix being the reason why I was called back in on an emergency basis… had collapsed! This varix was the thing that burst back in March, it was the thing that was threatening to burst again… and now it had collapsed! I was so happy when I read that I almost cried. Tears actually came to my eyes. The fact that the cerebral oedema was almost completely gone was also amazing, as it was the cerebral oedema that was mostly the cause of my headaches post-discharge.

The one odd conclusion I did draw from the letter, however, is the talk about the gamma knife. I’m getting the impression that the reason why I didn’t have gamma knife up until now was actually because it wouldn’t have worked – that my AVM was actually incurable. I had sort of suspected this anyway, as GK tends to work best on AVMs smaller than 3cm… and mine was 4x3cm. But it seems like this isn’t the case anymore! I mean, I’m not cured. I do still need GK to deal with the AVM because it can grow and it can create more varices and aneurysms. But hey, I’m a step closer to that end goal now!

The best part of this all, is that the letter arrived the day before my birthday. I noticed at the top that it was actually dictated and typed in September. Either it apparently takes 2 – 3 weeks to post a letter, or the staff at NHNN had decided to wait until my birthday to send this letter. I would love to think it was the latter – they did provide amazing care after all. Either way, this is the best possible birthday present anybody could give to this very happy, soon-to-be-22-year-old. I’m going to have to change the tagline at the top of this blog now aren’t I? 🙂

P.S. To everybody that has “liked” this and given your support on Facebook… Thank you. Thank you so much. Soppy as it is, the amount of support that people have given me, even 7 months on, has just been so overwhelming and I would not be where I am mentally, physically and emotionally without it 🙂

Moon face

Whilst I was wrapping my head around the side effects of my operation, I noticed some other odd things happening to my body. I was ravenous. If you know me, you’ll know that I have quite a small appetite. For some reason that eluded me, even though I ate three times a day, until my stomach threatened to do what Ralph had done a few months previously… I was still hungry. Hungry is the wrong word. Logically, I knew I wasn’t hungry – I knew my stomach was full. But I just wasn’t satiated. At first I thought this was some form of compensatory mechanism for the fact that I had absolutely no appetite in hospital and had lost 6kg in my week as an inpatient. I certainly was putting weight back on due to all the eating!

My skin had also decided it wanted to be on one of those “5 years younger” programmes. And by that I mean it decided to go back to spotty teenager mode. I’m not saying my skin is 100% perfect, but it had certainly never been covered in so many miniature eruptions for several years. I attributed this to the diet changes; I was eating more, and due to the sweetness I could constantly taste, I was also trying to eat more olives, crisps, generic oily savoury things. So I thought that perhaps this was the cause of the breakout.

It wasn’t until about 5 days post discharge when independently both myself and my boyfriend pointed out the change in my face shape that I was struck by a stroke of insight.

That morning, I woke up, started my morning routine as usual – Shower, wash face, brush teeth. When I looked in the mirror the face that looked back at me seemed quite different. All the food I had been eating had transformed my face into a much rounder, puffier one. I wasn’t happy and vowed to try and curb my seemingly bottomless appetite. When I had dressed and gone downstairs for breakfast my boyfriend made a passing comment about how much fatter my face seemed. I suppose most girls would be outraged if their boyfriend had just told them that they seemed fatter, but this comment struck a chord with me in a different way. Why would it be that independent of each other, myself and my boyfriend would notice the change in my face? Then I realised it.

I had a moon face.

And no, I’m not being racist or derogatory or mean in any way. “Moon facies” was the genuine medical term for a side effect from a specific medication. One that I had taken whilst I was in hospital all three times to help with my headaches, and one that I was discharged with all three times because you can’t just stop it – you have to be weaned off it. Steroids.

No… not those kind of steroids

Eureka! This was my lightbulb moment. All of my weird side effects suddenly weren’t weird at all. Suddenly, there was a great sense of clarity about what was happening to my body. Steroids are sort of like the marmite of the medical world. You either love them or you hate them. They are incredibly useful and help many, many different conditions… but come with a list of side effects. I don’t know about other medical schools, but at mine the side effects of steroids are drilled into our heads as soon as we start hospital placements. They commonly cause a puffy, round face (“Moon face”), “steroid acne”, increased appetite, central obesity, weakness of the thigh and hip muscles (which I had also noticed), and a weakened immune system. I knew all of these side effects. I had done a presentation on them to my peers, and presented an argument as to whether or not they should be prescribed as frequently as they are. Yet the thought of having these steroid side effects every time I took my dexamethasone three times a day didn’t even cross my mind until it was indirectly pointed out.

The reason why I was taking them was to help with the cerebral oedema, which is kinda like swelling… but in the brain. This was causing me to have headaches that weren’t really helped by my usual paracetamol or codeine, but I was very happy on the dex. When I was discharged, I was only discharged on a week long course of steroids – so the side effects shouldn’t have been that severe. I suppose my moon face was very mild compared to some patients that I had seen. Still, I was quite shocked at how noticeably different I felt on a reasonably low dose of steroids for a reasonably short amount of time. But even more shocking was how even though I had studied the side effects and the drug many, many times, it didn’t click that that was what I was going through. Similar to when I had my stroke – even though I recognised the symptoms and I had studied it several times, it just didn’t occur to me that it was happening to me. I suppose that’s the optimism of the human condition, which makes this whole event so surreal; even though you see it happen so often to somebody else, you can never truly comprehend it happening to you.

What a difference steroids make...

What a difference steroids make…

Hospital, round 3

12th June14

I’m pretty sure most patients don’t get excited at the prospect of going back into hospital. Then again I’m pretty sure most patients don’t want to specialise in the condition that they have. I guess by that logic you could say I didn’t fit into the category of “most patients”.

Once my nurse had assured me that the new development wasn’t anything to be too scared about (but evidently serious enough for them to want to get me back in hospital within 5 days), I had something new to look forwards to and got more restless the closer it got. There have been a few moments in my life where the waiting was more unbearable than the event – Waiting to hear back from universities to see if I had a place, exam results or interviews for example. The waiting for this appointment definitely outranked all previous experiences. I spent most of the time reading the AVM forums to see what experiences of angiograms/embolisations people had, as I was unconscious the last time I had an angiogram. It was explained to me that as I was coming in for an elective procedure, on the Wednesday I would have to wait for a call from the bed manager to tell me I could come in. Wednesday dawned and I was fidgety the whole day, freezing whenever my phone vibrated and becoming exasperated when it was something else. I finally got called around 4pm to tell me to come in after 6pm, but as I had already packed my bags I then had to wait another agonising hour and a half before heading off!

When we finally arrived at the hospital, we were greeted with some confusion. Despite what I was told by the bed manager, the staff at Victor Horsley were not ready for my arrival! Nobody knew how long I would be staying, as I would either be just having an angiogram (overnight stay) or a possible embolisation (a bit longer than overnight). I ended up being given the side room, normally reserved for the seriously ill and/or contagious. Which suited me just fine, as I had my own personal TV and ensuite. Amazing!

I started getting a lot of mixed messages once I had settled in to my room. Yes, it’s fine to eat. No, don’t eat, you need to fast. We need to take your blood (okay that one wasn’t mixed at all). You’ll talk to the doctor before the end of the night. Your team will see you tomorrow. Eventually when it got to 1am I decided I was too hungry and too tired to stay up any later waiting to see my team and was subsequently woken up by a familiar face at 6am the next day – one of the nurses who I had made friends with had come to take my blood pressure. As the morning unrolled, so did my team. An anaesthetist came clerk me (and was surprised by my use of medical terminology) and to do a pre-op check to make sure I was suitable for general anaesthesia *if* I would need it. Tina, my neurovascular nurse, popped in to say hello. Then I met Dr Adam Rennie, the interventional radiologist who would be doing the procedure. Ultimately it would be his decision as to whether or not they do angio + embolisation, or just angio. He started by explaining what had changed in my AVM, why I was here etc. It turned out that he had decided that regardless of what the angiogram showed, he was going to embolise anyway. But of course, first he had to gain consent from me. “The varix by your AVM has… Uncomfortably enlarged. If we don’t do this procedure there is a 100% risk of it rupturing again within the next few weeks”. Great, so I was going to have another stroke – obvious choice is to do the procedure, right? “However, I do have to warn you about the risks of this procedure. There is a very small chance that we could cause the varix to rupture whilst we’re in there, which would cause a haemorrhagic stroke and could lead to permanent disability or death.”

Wait, what?

So I guess my choice was either not have the procedure, and risk having a stroke… Or have the procedure, and risk having a stroke. Damned if I do and damned if I don’t. I reasoned that if I was going to have a stroke, I would rather it be in the hospital and signed the dotted line. This was another odd, ‘being on the other side’ experience. Even though I understood the procedure clearly, knew exactly how small the risk was, seen it be done successfully in several patients, there was still a small stab of panic that went through me when Dr Rennie mentioned the risks. I now understand the hesitancy that some patients have when you mention the risks of surgeries and procedures to them. It’s one thing to be a detached party and know how small the risks are, but it is on a completely different emotional level to experience the value of that risk yourself. I found myself trying to balance the rationality that was taught to us in med school, vs. the irrationality of the injured human condition. Going through something like this made me learn a lot about myself, my future patients and the enduring spirit of human nature.

Anyway, I digress. Once I had signed the consent forms for all the relevant team members, it left me with about two hours to forget about how hungry I was (not helped by the breakfast lady forgetting I was nil-by-mouth and giving me breakfast). But yet again, the problem with waiting is your mind begins to wander, and form torturous, far fetched conclusions. I knew that I was now definitely getting general anaesthesia, as the embolisation required Dr Rennie to go in far deeper into my brain than the angiogram would. A little bit of fear started to take seed in my thoughts. What if when I woke up, I would be a different person? At least with surgeries in other areas, when you wake up and feel fine, you wake up and feel fine. But this was my brain. What if I woke up and felt fine, but my personality had completely changed? Or what if I woke up and didn’t recognise the people around me? The prospect terrified me, even though I knew it was highly unlikely.

For those who don’t know, an angiogram is an imaging procedure done by sticking a long, thin, flexible tube (catheter) into the femoral artery (main artery in your groin), threading it up the arterial system until the tip reaches where you want to visualise -in my case, the main artery that supplies the brain (the internal carotid). Radio-opaque dye is injected into the blood vessels and X-rays are being constantly taken so the radiologists can see in real time where the catheter is. This allows for really good visualisation of the blood vessels. In an embolisation, the catheter would be threaded even deeper into the brain through the blood vessels until the tip is at the site of interest, then what is essentially superglue would be injected into the vessel to try and staunch the abnormal blood flow. The danger with this procedure is there is relatively little control – once the glue is injected, it could very well block the wrong blood vessel (which might be a normal one and thus cause an ischaemic stroke). It can be a highly effective and relatively non-invasive way of treating vascular abnormalities though, with only a tiny scar in your groin to show for it.

IMG_1103.GIF

The time came for the porter to take me down to the theatres. I was accompanied by my mom, boyfriend and boyfriend’s mom, who all assured me they would be there when I woke up. In the anaesetics room I was greeted by the same anaesthetist who did the pre-op, and Dr. Rennie. Doctors were still finding novelty in being able to use medical jargon in front of me and hear me reply back to them with full understanding, and as a result I got a very detailed description of the procedure, what drugs were being used to put me under, how I was being intubated etc. well I suppose I had to know all of this for the anaesthetics rotation in my next year of med school anyway! The anaesthetist put a cannula in my hand and I complemented him on his speedy insertion, which he attributed to my excellent veins. I feel like there is some form of medical innuendo here! I was halfway through saying how I was glad I was not the only one that appreciated big veins when I passed out. Time for Dr Rennie to work his magic.

“The Call”

Hi there, this is Tina, your neurovascular nurse. We’ve had a review of your scans in the multidisciplinary team meeting and we noticed that some of the vessels look… bigger. We would like you to come in for an angiogram to get a better look at it, we’ve booked you in for next Wednesday. Call me as soon as you get this message.

This was the voicemail I came back to after temporarily losing my phone one Friday morning. And yes, by “next Wednesday” Tina did mean in 5 days’ time.

To give a bit of context to this message: I was hospitalised for the second time for 5 days at the end of May, during which I had another MRI and CT scan. I was discharged on a Friday, I know my team have MDT meetings on Mondays and I got that message the following Friday. So all in all a pretty short time frame. Of course, I absolutely freaked out after hearing that message. I had just been discharged from hospital and now you’re telling me the bomb in my head looks BIGGER?! Not cool. I called her back ASAP and she explained that some of the venous varices that drained my AVM looked a bit bigger and I had venous congestion, which was causing cerebral oedema. Which explained perfectly why I had the symptoms I did that sent me to hospital the second time, but there was no new bleed on scans. Ooooohhhh!

To the non-medics reading, I must have just spoken a different language. Let me translate. A “varix” is a swelling of a vein, like an aneurysm. I think the two terms are interchangable. The direct shunt of high pressure arterial blood to the veins was causing them to dilate and expand, causing a varix. As the veins couldn’t drain fast enough due to it receiving blood it wouldn’t normally receive, there was a collection of blood – venous congestion. This was causing my headaches – think like a congested M25 (which also causes headaches). Venous congestion in the brain would cause cerebral oedema – oedema is the the term used to refer to fluid retention, which causes swelling to put it very simply. When there is a build up of blood, some components leave the vessels and enter the extra-cellular space, which makes it look swollen. Hence why you get swollen ankles at the end of a long day of standing – the blood pools in your feet. Anyway, oedema can happen anywhere, but when it happens in your brain it’s extra fluid that isn’t meant to be there – explaining my headaches, nausea, photophobia and neck stiffness.

I know it’s cheesy, but it’s not often that you get that one phone call that changes your life forever. I think it’s safe to say that this voicemail and the subsequent phone call was an example of this and will henceforth be known as “The Call”. How dramatic!