Land Of Confusion
In a previous Blog (“Both Sides Now”) I spoke about us survivors taking responsibility for our situation. I guess most of us start to research what has happened to us. If we don’t, then we should. I know it’s painful to do this and very hard to face up to but it’s our brain, our body, and we need to understand what’s been going on. If we can pluck up the courage, then there really is no excuse, given the internet provides us with so much information at our fingertips. And we have medical professionals to ask. I have started this process of gaining knowledge, and I began with the notes given to me when I left hospital. (I have also got hold of my CT and MRI scans, see the ‘Pics’ section of this website). Here are some quotes taken directly from my hospital discharge letter, dated 18th June 2013:
“. . . acute ischaemic stroke affecting cerebellum . . . acute infarct involving the left lateral medulla, the left cerebellar hemisphere and the left side of the vermis . . . associated mass effect with effacement and displacement of the fourth ventricle . . . dysiadochkinesis and nystagmus . . . marked oedema around the area of ischaemic infarction with midline shift, in keeping with developing hydrocephalus . . . external ventricular drain and posterior fossa decompression performed 30/05/2013 . . . ”
But what does this all mean? In plain English, then:
“Cerebellar ischaemic stroke” means that the brain attack I had was a blockage (a clot) in my cerebellum. This is the part of the brain that ‘hangs down’ in the rear of the skull, just above the neck. The blood clot blocked an artery
“An acute infarct involving the left lateral medulla, the left cerebellar hemisphere and the left side of the vermis”. An infarct is tissue death (in this case, tissue death is brain tissue death which means brain damage) due to inadequate blood supply to the affected area as a result of the clot. (As an example, myocardial infarction is the death of heart tissue, commonly known as a heart attack). The medulla (or medulla oblongata) is located in the hindbrain, at the front of the cerebellum, in the lower central part of the brain near where the spinal cord connects to the brain itself (the cerebellum is the part of the brain responsible for movement, balance, and coordination). The medulla looks after automatic functions like breathing, heart rate, blood pressure, vomiting, sneezing, etc. So, the artery blocked by the blood clot was near where the spinal cord joins the brain, but a bit to the left.
The cerebellar vermis is located in the middle of the cerebellum, situated in the posterior fossa (rear) of the cranium (this is a small space in the skull, found near the brainstem and cerebellum). The brainstem is where the brain links to the spinal cord. The brainstem includes the midbrain, the pons and the medulla oblongata. The brainstem, though very small, is a vital part of the brain as it provides the main motor and sensory communication to the face and neck via the cranial nerves. (Of the 12 pairs of cranial nerves, 10 pairs originate from the brainstem). This includes things like touch (both fine and crude), vibration sensation, spacial awareness, pain, temperature, itch, etc. Functionally, the vermis is associated with bodily posture and movement.
The “posterior fossa decompression” refers to my brain surgery. The brain attack was quite major and so had caused my brain to swell in the area of the clot. This swelling of my brain had blocked the drainage of CSF (cerebro spinal fluid). CSF is produced in the brain (about 20 ml an hour – the total volume of CSF in us at any one time is only about 125 to 150ml) and forms a protective layer between the soft, fleshy brain and the hard, outer skull. The CSF drains naturally from the brain/skull cavity and is absorbed into the body. However, the swelling in my brain had blocked the CSF from draining away, but I was still producing it. Every hour another 20 ml was being produced. With nowhere for the CSF to go, it was building up in the space between my brain and my skull, slowly squeezing and crushing my brain. (The skull is very hard, the brain is very soft. Any pressure build up in the head is extremely bad news for the brain. It will lose that battle 100% of the time). This produced a condition called ‘hydrocephalus’, or ‘water on the brain’. I have no memory of this, but I appeared normal to the doctors. However, my wife was noticing subtle changes in my behaviour and brought this to the doctors attention, telling them “He’s not right, something’s not right”. Luckily, they listened to her, and an MRI showed what was going on. So, it was emergency brain surgery to ‘decompress’ my skull to relieve the internal pressure. This involved drilling a hole in the top right side of my head in order to insert a drain tube, and also to remove a piece of my skull (roughly 3 inches across) at the back of my head, in order to give my brain some room to swell in to. (I now have a 6 inch/15cm vertical scar at the back of my head/neck and an indentation on the top right side of my head that is about 0.75 inch/1.5cm in diameter). When my wife asked the surgeon what the risks of the surgery were, he said “Well, if we don’t do it soon, he’ll die”. The 6 hour operation was carried out late on Thursday 30th May 2013 and went into the early hours of Friday 31st.
Dysdiadochokinesia is a feature of cerebellar ataxia (a group of disorders that affect co-ordination, balance and speech) and is often the result of lesions to the cerebellum. It is checked physically by asking the patient to do various things (for example, to tap the palm of one hand with the fingers of the other, then rapidly turn over the fingers and tap the palm with the back of them, repeatedly). There are also tests for the legs. (These tests were conducted with me but I have absolutely no memory of them. Apparently, I was fine on the right side but my left arm, hand and leg movements were all over the place). When testing for dysdiadochokinesia for speech, the patient is asked to repeat syllables such as /pə/, /tə/, and /kə/. Any variations, excessive loudness and irregular noises are signs of speech dysdiadochokinesia. My eldest son was with me when I had this type of test carried out. I was in ICU recovering from the brain surgery. (I must stress that I don’t remember this at all). Apparently, the speech therapist asked me to make these various sounds:
“Very good, say ta”.
“Excellent. Say ka”.
“Well done. Now say oo”.
“Oooo mama mia let me go, Beelzebub has a devil put aside for meeee”.
Yep, I burst into ‘Bohemian Rhapsody’, the full baritone part. What on Earth was going through my mind?? (I blame the meds. Obviously as high as a kite!). Shortly after this, I was moved from intensive care into one of the Neurosurgery Wards. I guess they like to keep it quiet in ICU. Some nutter bellowing out an off-key BoRap isn’t conducive to recovery in critically ill patients, apparently . . .
Nystagmus is a condition of involuntary eye movement, that may result in reduced or limited vision. Due to the movement of the eyes, it is often called "dancing eyes". This condition was to worsen, so that after my brain surgery, I had double vision (both horizontally AND vertically) as well as nystagmus. Combined with my short-sightedness, it meant I could hardly see and could only read with one eye shut. After 5 minutes of this, I would be exhausted. The ophthalmologist gave me a patch to wear over one eye when reading, rather than trying to keep one eye shut. For some obscure reason, this caused my wife to double up with laughter. Personally, I think a black eye patch must be quite an attractive thing to see on someone. I suspect I had quite a few admirers amongst the nursing staff. Yep, I reckon that ol’ eye patch turned me into a bit of a babe magnet. I don’t see what’s funny about it at all . . . . I also had plastic prisms fitted to my spectacles which were changed every couple of months (or so) as my eyesight gradually returned to normal, but this took about a year or more. For several months, there wasn’t much I could do. Watching TV was pointless, I couldn’t see anything. Reading was in 5 minute bursts with the patch over the opposite eye. (“Oh look, it’s a pirate trying to read”).
Looking back, nearly four years on, I didn’t realise at the time that I was in such a bad way. However, I was still breathing! Please, please do research into your particular situation. It’s a tough, emotional journey – many people don’t want to go there – but it’s amazing what you learn. It’s your life, your brain, your responsibility.
Until next time,
“This is the world we live in, and these are the hands we’re given”