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.


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!