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!