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

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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!

Epilepsy

My seizures started a few weeks after I was discharged from hospital, around April 2014. At first it didn’t occur to me what they were, until they started recurring in exactly the same manner and at exactly the same time each month. So I made an educated medical guess what they were (temporal lobe seizures), told my team (and struggled to convince them I wasn’t over interpreting things) and eventually had an EEG done in December 2014. I wrote a post about my seizures; check it out here.

But that was normal. So I thought that was the end of that.

However, the new year came and went and by mid-January 2015 I had had 2 more since my EEG. In all honesty, I didn’t really expect the EEG to highlight anything. After all, I didn’t have a seizure during the EEG, so it wouldn’t make sense to have an abnormal EEG anyway. Half a year passed by and I was still having them at the frequency of roughly once per month and at some point in June 2015, a letter fell through the letterbox informing me I had an appointment with a neurologist at an epilepsy clinic.

Finally. Perhaps now I could get a confirmation (or not) of my suspicions. Granted, being seen by a neurologist involved a lot of work – I had a 10 page questionnaire to fill out that seemed more like applying for a visa than explaining about my seizures. The day approached and I went with my boyfriend, so I could have an external memory of the consultation, just in case. I presented my questionnaire, gave my history, and met with the very concise response of “Yes. It’s quite obvious that you have epilepsy.”

I knew it!!

But as with the majority of my story, I’m often right about my own diagnoses… and this is often a bad thing. We then spent a while discussing treatment options and future plans, the conclusion of which was: Tell the DVLA, start on lamotrigine and see where we go from there.

I’m writing this about 2 months after my diagnosis, and I’m pleasantly surprised to say that I have had relatively few side effects from starting my anti-epileptics. I’m still in the process of titrating the dose up to what it’s meant to be, and everytime the dose increases slightly I get a small side effect for a few days… But thankfully it fades. The best part is, I haven’t had a seizure since the 6th of June, 2015. Only got until the 6th of June 2016 now until I get my licence back…

I think the weirdest part of this whole situation is not the condition. Sure, actually experiencing my seizures are very, very strange, overwhelming and rather trippy. I got used to them once I figured out what they were, however. The weirdest part for me is getting used to calling myself “epileptic”. Saying I have “epilepsy”. Something I never thought I would say, but then again I suppose I never expected that I would ever have to utter the phrase “I had a stroke” at this age. I suppose this is a recurring theme with illness – indeed, a lot of people I have spoken to about having an illness have agreed that one of the hardest parts is accepting that your idea of yourself has changed. That you cannot apply for research projects looking for “healthy volunteers” because… you’re not healthy anymore (okay maybe this point only applies to me). You have a chronic illness. You spend your whole life trying to figure out who you are, and when you have it figured out, it gets erased in an instant. I’ve said it before, but I feel this acceptance of your new self, your new status in your life is paramount to assisting recovery. You might not be able to change what happened to you, or what you went through, but you can change the way you deal with it.

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!

 

Angiogram

So yet again I’ve taken a long hiatus from blogging – but generally that’s a good thing, as I’ve been so busy with enjoying life and getting back to things that complaining about it on my blog has taken a back seat!

At the request of several family members; here is an update on how my angiogram, which I was preparing for in my last post, went.

This angiogram took place on the 30th of December, in that odd period between Christmas and New Year that nobody really knows the purpose of. This wasn’t my first angio; it was actually my fourth. However this was the first one that I would be conscious for, and when you know you’re going to have a wire and tube inserted up the artery in your leg and threaded all the way into your brain, even an above average amount of insight doesn’t really help to calm the nerves, the anticipation and, most importantly, the curiosity.

The day approached. I was up bright and early, as I had to check in with the hospital at 8am. There was some initial confusion as to where to go – my letter had suggested I had to go to Outpatients, despite the fact that I would be an inpatient for a day. Eventually we were directed to a ward, and I was sad that it wasn’t my usual ward, Victor Horsley. Instead we were sent to, rather strangely, a ward emblazoned with “Nuffield Health, Queen Square Private Ward”. What? Thinking that we were going to have to move yet again, we entered the ward with some trepidation… only to discover that we were indeed expected in the private ward and my bed was waiting for me. What a pleasant surprise!

The private ward was plush; you truly do get what you pay for. Each bed had its own separate room, with a flatscreen TV, ensuite bathroom, wardrobe and… a MINI FRIDGE in the wardrobe! Interestingly, the bed in the private ward was exactly the same as the bed in the NHS ward. So whether you were prince or pauper, you still slept on the same mattress. I feel like there is some clever, significant saying I could make out of that but I’ll leave that to you guys to figure out. Having been on morning take before and having been the patient subjected to morning take, I knew the drill and patiently waited to have my obs done and be clerked in. An hour later, I was still waiting. And starving too, as I had to be nil by mouth from midnight. Eventually a nurse came to take my obs whilst a locum doctor from America clerked me in and took my blood. I ended up having to point out where my vein was and stabilise it, as she missed it first time and pierced through the vessel. Oh dear. Shortly after, the interventional radiologist that was going to do the procedure came to take consent from me… not only for the angiogram, but also to ask if I would be happy to do an MRI afterwards for a study he was doing. I instantly said yes, and tried to see if there was an opportunity to help. Sadly he missed the meaning of that and I only helped by contributing an image of my brain.

Yet more time passed, mostly interspersed with me napping, chatting to my boyfriend’s mom who had accompanied me or sending hospital/”omg private ward” selfies on snapchat. 12pm rolled around and I was taken downstairs to the theatres, and so the angiogram experience began. As I was taken into the theatre, I noticed on the wall the very same poster of the anatomy of the brain that I had stuck to my bedroom wall, which made me smile. My femoral artery was found (handily signposted by my scar from my previous angiograms), skin was prepped and local anaesthetic injected. Which, in hindsight, was the most painful/uncomfortable part of the whole procedure. I had requested some form of blanket as the theatre was quite cold and I had a fan heater blowing heat onto me underneath the sterile drapes. Which was amazing, until the local anaesthetic kicked in and I then had a cold triangle of skin; a very odd sensation. Satisfied that the patch of skin was numb, the catheter (4 french; roughly equivalent to 1.3mm) was inserted and threaded up my arterial tree. This again was an odd sensation; I could sort of feel it as a slight pressure in my common iliac, when it hit my abdominal aorta I could feel it less and once it went past my heart, I could feel absolutely nothing. Even though I could see the radiologist pushing and pulling quite forcefully at times, nothing could be felt. Eventually he reached my internal carotid and this is where the fun really started.

I had been warned, and read interesting stories, of the effects that the dye injected to visualise the vessels had on your brain. My handy “What to expect” booklet had told me of perhaps seeing flashing lights, hearing strange sounds, tastes; and my doctor had said the same. He was going to warn me everytime he injected the dye, after which I had to hold my breath for the duration of the contrast and X-Ray. Much to my annoyance, the screens were sort of in my left peripheral vision, but I couldn’t see them properly unless if I turned my head. Which I wasn’t allowed to. I had to stare straight up at the white box that was the tail end of the X-ray machine. But this white box provided the perfect blank canvas on which my visions grew. The first time I was so taken aback by what had appeared in front of me that I didn’t have time to analyse it before it ended. “Wow,” I told the doctor, “That is certainly an experience.” He replied saying he had heard similarly from other patients, and almost wished he could experience it too. The next time he injected, I was prepared.

It started in the center of my vision; a white glowing square that grew until it reached the edges, then it faded out to be replaced by some white glowing, pulsating, branching structures growing from the peripherals of my vision and sprawled across back to the center. I say branch, but in all honesty my first though was I was somehow seeing my retinal blood vessel network. It was very organic; it looked like a tree in winter, like a network of vessels or a network of neurons. Whilst this was going on, it was accompanied by a soundtrack that filled my head; a crackling, popping sound and sensation very similar to having too much popping candy in your mouth… but it was in my BRAIN!

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These effects happened every time dye was injected into that artery, but once the target artery was changed, the effects changed. On one injection, exactly half of my face became a temporary radiator, which changed to the other side of my face when the same artery on the other side was injected. Then a new artery was selected and I had a strange, almost metallic taste going down the back of my tongue and throat. After a few more injections the team were happy. I tried to ask them as many questions as possible but I had to hold my breath so many times I ended up staying silent. As they were wheeling me out of the theatre I manage to get a glimpse of the screens and saw Ralph in all its twisty glory. I was astounded; it was like I had been blind previously and now I could see. Ralph’s nidus was suddenly there, in full HD glory. It was like watching a YouTube video in 1080p instead of 240p resolution.

When I was in recovery and my wound was being compressed, Dr Rennie, the wonderful interventional radiologist who did my embolisation back in June, came to say hi. We discussed a lot; mostly neuroanatomy, specifically MY neuroanatomy. He was happy with the angio today; it turns out the reason why previous angio’s haven’t been clear was because the varix was occluding the main nidus and casting a shadow on it. But now that my AVM was more visible, just how complicated it really was was also more visible. It was previously thought that my AVM had one feeding artery, and one draining vein. Like most AVMs did. It turns out, Ralph has not one, but THREE feeding arteries, and was starting to recruit dural blood vessels to drain into. Which, in summary, meant that Ralph was still pretty complicated, and we still had to watch and wait.

After having a very quick MRI for the study, I was taken back to the ward. On the way back I expressed concern about missing lunch, to which a nurse assured me that seeing as I was on the private ward, if I missed lunch they would cook a new one from scratch for me. Thankfully I hadn’t missed lunch and was presented with a posh plate of tomato soup, bangers and mash, and sticky toffee pudding under…. a silver dome. Yep, my ward had silver service. And asking for some water resulted in me being given a monogrammed glass carafe of some fancy alpine, volcano-filtered still water, instead of the plastic jug of tap water that I was used to. I could see why people paid for private now – if not for the healthcare, then for the hotel like service and food!IMG_1117IMG_1116

 

After lunch amongst my visitors was Mr Shieff, who came to check in and update me with what Dr Rennie had already said. He mentioned that the gamma knife team would be looking at these images and come to a decision. They haven’t. I’m typing this on 18/02/15, almost 2 months later, and so far the decision has been made to give me another MRI scan.

Eventually I was discharged around 7pm. Overall the angiogram experience had been more fascinating than anything. Possibly the most irritating aspect was the part where I had to lie completely flat for 6 hours after my angiogram, to minimise complications of the wound site. That doesn’t sound bad on the surface, but try drinking tea through a straw, lying flat. And if you needed the toilet…. well, you just learn to have a very strong bladder. All those weeks spent holding my bladder on Duke of Edinburgh expeditions did come in handy after all!