August 2nd, 2018
That day did not start well. I barely got to the bus stop that is located maybe 500 meters from my house? A quick march, accompanied by bouncing off roadside signs, cars, walls and more frequent panicky attempts to catch balance, ended up with breathlessness and dizziness stronger than ever. I leaned against the bus stop post and thought, “I think I have to sit down, something is really …”.
“Hey, buddy, are you all right?” – the sound from a distance was barely breaking through the screeching noise in my ears.
‘Hey, have you had a hard night, pal?’
I barely opened my eyes, the world was spinning. ‘Are you taking the 44?’ … I think I managed to say ‘yes’ because two men picked me up from the ground and pushed me into the bus before I could compose myself to the point where I could say that I was in trouble and in need of medical attention. It’s horrifying, by the way, that someone can just assume that the man lying at the bus stop = he is probably drunk and just needs some help to pick himself up. And what if I had a stroke, a heart attack? …
I collapsed on the nearest chair and immediately drifted away. Cold sweat ran down all over my body, while I struggled with dizziness and barely managed to open my eyes from time to time, to check where I was. When I got to Musselburgh, I felt much better – I stood up on my own, and that’s something … Don’t remember how I got to the office – probably by momentum – I sat at my desk and then I realised the full extent of the situation – whatever was happening in my head over the past few months, it has reached a level at which it just cannot be ignored anymore. That was not an ear infection as initially suspected. I told the office manager that I was going to the hospital and returned home.
“Helpful” guys from the bus stop really put me in an inconvenient situation. I knew that I require immediate help, but since I am conscious and functioning, calling an ambulance seemed to be an exaggeration. What was I supposed to say – that I passed out 2 hours ago, but I managed to get to Musselburgh and back to Edinburgh on my own? I had one neurology consultation at the hospital behind me, which got me thinking that maybe I should contact the hospital (because in the end, they know about my condition already, another visit and MRI were scheduled in 2-3 weeks or so), but on the other hand, the hospital requires a referral from a GP. Finally (after checking with the hospital over the phone) I visited my GP who, after listening to the story about the events of this morning, grabbed a phone and informed the hospital that I will show up there shortly. Looking back at the events of the last few weeks, I must say I like my doctor more and more. I have to say that she is a competent doctor – contrary to my previous GP who was prescribing paracetamol, tea and rest for everything from common cold, stomach flu to a twisted ankle. The tests she performed a few weeks earlier, were precisely the same as the ones conducted by the neurologist a week earlier and later in the hospital, doctors and students performed those dozens of times.
When they finally found a bed in the emergency room (I spent the first 20 minutes in a chair in the waiting area), the doctors, nurses and students started spinning around me like a tornado – everyone asked me the same questions, asking for the same symptoms, doing the same neurological tests. Nobody said anything about their suspicions or suggested a diagnosis, but from the number of people visiting me behind the screen and similarity of questions, I began to suspect that the symptoms start to form a sensible picture, they suspect something, and this is not an optimistic diagnosis for me.
In the end, a decision was made to make a CT scan – a wheelchair ride through a maze of hospital corridors was a strange experience – for the first time in my memory I was treated like a disabled person. After the scan, I returned to the emergency room, but due to a lack of a bed to spare, I spent the next half an hour in the waiting area again. ‘maybe my condition is not so bad after all?’ – I thought to myself.
The consulting doctor approached me with a stone cold face. ‘David, I would like to show you something, one of those things is something that you probably have for a long time, so probably this is not what caused today’s episode’ … Hmm… What I saw on the CT scan explained many things from my childhood – brain looked like a cauliflower, which fell out of someone’s hands and shattered badly – a lot of holes and black spots. The doctor suggested that it’s something that might have happened during the last stage of pregnancy, but he would consult a neurologist. Of course, I shared my story of hemolytic disease and blood transfusion at birth, complications resulting in swelling of the head, subsequent blood transfusion and later problems … Neurologist – doctor M. – was with me within 15 minutes … We had a chat about my early childhood and postnatal complications. It turned out that my brain is extraordinary – just after birth, many functions of the left hemisphere swung to the right side – only thanks to this I was able to live a relatively normal life, which surprised the neurologist – she asked about any problems with learning, physical disability, etc … I was probably a fascinating case for her, but I sensed that this was not the reason for her visit (though she did not fail to bring a student to conduct once again an interview with me – how many times I iterated through my symptoms already?). She announced that they were taking me to magnetic resonance imaging (MRI) lab. Again, I sensed the change in the air, because this time I was not riding in a wheelchair – I was taken with my whole bed and asked to lie down at all times during transport … Hmmm … I was accompanied by my neurologist and one of the young doctors (intern?) who stayed with me and happened to be a good companion, we managed to kill some time chatting about Poland, and places he can visit there.
Magnetic resonance … It’s good that my claustrophobia these days has only a socio-emotional dimension rather than a reaction to tight spaces … My ears got covered tightly by the technician, and I was grateful for that – the noise was horrible – despite the earplugs and pillows, I had the impression that I was sitting next to some factory machine that would soon fall apart from vibration.
I did not return from MRI to the emergency room – I was taken to the intensive care unit (ICU) in the neurology ward. Nobody says anything …
More doctors – neurosurgeons this time… Looks like an escalation to me. From the tone of their voice and surreptitiously cast nurses’ glances, I sense that they already know (something must be wrong with me since I am on the ICU isn’t it?), but still – nobody says anything, they are waiting for someone important, apparently.
Medication, tests, interrogations … I didn’t realise that it’s just the beginning and I will be asked for my date of birth, the day of the week, hospital name and other details hundreds of times over the next few days …
After a few hours (finally!), a neurosurgeon appears – a small Irish man – at first glance I can see that he is terribly tired as if he did not sleep for two days and ran a marathon (from nurses I learned that he just finished a complicated surgery) … In a quiet and soft voice, he announced that I have a tumour in my brain, that is pushed into the nerve by a cyst (cystic vestibular schwannoma), and this was a cause of all of my symptoms. They will stabilise me, shrink my brain with steroids to lower intracranial pressure and on Sunday they will perform surgery. The plan is to drain the cyst, which will reduce the pressure on the tumour. Then they will commence the observation and if it turns out that a tumour continues to grow – another operation will take place in a few months or maybe next year.
Relief … Wait, relief? Is it not the right time for panic? Anger? Tears? I guess I had to jump through 5 stages of grief in a fraction of a second because I accepted the news with a relief – after all, someone finally knows something – after months of struggling with progressing disease and lack of success in its diagnosis, finally some certainties. I thanked the doctor and said that since he knows what is wrong with me and what he wants to do with it, I am a happy bunny, and I am looking forward to the surgery.
A psychologist/therapist (as it turned out later) visited me, who tried hard to help me deal with a difficult diagnosis. I guess he left disappointed because the patient did not cooperate – instead of an angry patient in denial, he found smiling and joking patient surrounded by tubes and monitors, who did not show any signs of a nervous breakdown. We talked to each other for a bit, he made sure that I knew that I could count on his help and support at any moment and he went away.
The following night was one of the hardest in my life. Not because of my condition, but because of the surroundings. ICU is not a place of rest and relaxation – people here are just before or just after neurological surgery, or in other condition that requires constant observation and care. I felt like an intruder, to be honest – I lay quietly, resting, reading news from the world on the phone or learning Arduino programming while people around me howled with pain, defiled every 15 minutes, requiring bathing, changing diapers like babies. One of the elderly patients, waking up from lethargy every 15-20 minutes, panicking, plucking a tube that fed food into her stomach through the nose, ripping off the dressings of her wounds. Wonderfull. Monitors raised alarms every few minutes, and nurses who probably experienced many of those every night, ignored most of them, knowing which signal indicated a real problem, and which only meant that the patient once again threw blood pressure sensor off their finger – so alarms rang and beeped almost constantly. Every hour (or at every opportunity – whichever came first) the nurse performed a customary interrogation – ‘what is your name, what’s the day today, where you are, what’s your date of birth?’.
Additionally, the usual blinding with a flashlight to check the reaction of the pupils. I still could not understand why there is such a panic, why these questions? 8 days later, when Dr M. came by to say goodbye, she explained that during the first 12-18 hours of my stay in the ward I actually had high intracranial pressure, and there is no simple method of controlling it electronically. The easiest way is to monitor the patient’s intellectual performance – if I would start to answer incoherently for the questions that had not been a problem before, or the pupils would not react to the light naturally, I would end up in an operating room. One team of neurosurgeons was always on call.
3 August, Friday.
The next morning I noticed that I not only feel better, but I am also in an objectively better state – I can walk more confidently, the tremor of my left hand has almost disappeared. Doctors ordered the continuation of therapy with steroids, and the tedious stage of hospital life began. The surgery was scheduled to take place on Sunday, so I had a lot of time to burn. I didn’t really felt ‘sick’ but from the whispers and the looks given by the following shifts of nurses I gathered that I am a special care patient and any deterioration of the vital parameters should be immediately reported to the on-call neurosurgeon.
The Irishman reappeared – a change of plans. Not only will they drain the cyst, but they will try to cut out as much tumour as possible and burn the rest with gamma radiation in a few months. We are waiting for a facial nerve detector, a device that should help protect the nerve from damage. Well, whatever you say Doc, I just lie down here and try not to die of boredom.
In front of my bed, there was a board meticulously filled by nurses with information about my body temperature, blood pressure, heart rate, oxygen saturation, the intake/output of fluids… (yes, I got to discover the charm of peeing into a bottle – another ‘first time in my life’ …).
I learned that the plan was to operate on Saturday, but they are still waiting for the facial nerve detector. It was not until much later that I found out that the hospital had such a device, but there was something wrong with it, and the surgeon asked for a substitute from another hospital in the city. So the plan is to operate on Sunday. I am waiting. Nothing happens. The flow of information breaks down – a doctor throws loosely during the rounds, that some additional test has to be performed – the order is noted by his subordinates in a laptop, but it’s not in the NHS system yet, so the nurses do not receive orders officially. But the nurses present at the morning rounds already inform me that the test will be performed. Then consternation, because there is no official order in the computer system, although half of the staff knows that it was supposed to be done today because they heard the doctor’s prescription – it finally comes after 3-4 hours and some confused conversations between nurses. This situation happens a few times – a bit annoying to be honest. Fortunately, I witnessed the mess of the health care system in Poland, back in a day, so that small glitch in the system was not really a big problem for me, but I guess someone uninitiated could feel a bit lost in that situation.
Nurses are amazing – the level of their dedication, kindness and patience astounds me at every step. I know that ‘it’s their job’, but there is a difference between the competent performance of one’s duties and what I experienced at the ICU. After the experience of the first night, I realised that I could not be a nurse – some patients would end up strangled with a pillow on their face after fourth in an hour bathing and a third in an hour procedure of reinserting of catheters and probes. The second night, I managed to sleep well (apart from the hourly check-ups), because the nurses made sure to partition my bed away from the rest of the room with curtains and silence the monitors. I was grateful for that – nothing improves well-being like a good sleep. I think that they were also happy about the fact that I am a fuss-free patient who does not need anything, who does not need to be soothed, washed and dressed in a fresh diaper every 15 minutes.
Saturday should be another dull day. Suddenly, one of the neurosurgeons enters the room ‘did you eat anything?’ ‘No …’ (a lie, I ate a banana already, but I said nothing). ‘That’s good, maybe we will be able to operate on you today!’ … In the next 30 minutes, I was examined by 4 different doctors. Lab technician drew 3 vials of blood for testing, anesthesiologist conducted an interview, and finally the ‘boss’ appeared – Irishman whom I met on Thursday – doctor S.- a tumour specialist who showed me a photo from the CT scan on his phone – I finally saw my killer – a tumour and cyst in all its glory. I signed the consent for the surgery and dropped on the bed with a sigh of relief. Finally, we are moving forward! After another hour, the next message comes in- the machine is about to be delivered later that day, but it will be delayed, so there is no sense in rushing the operation just to squeeze it into today’s schedule – they will perform the operation on Sunday, in line with previous plans. Adrenaline dispersed like air from a pierced balloon… Well, let’s go back to doing nothing… I fished out one more thing from my conversation with the ‘boss’. A person in my condition should complain about hearing loss – and I, surprisingly, had the perfect hearing (for my age). I realised that every person who asked me about the symptoms was confused with my response regarding hearing – everyone expected me to be at least partially deaf – probably some people were disoriented by it. Subsequent developments indicate that it would be better for the doctors if I were already deaf – postoperative complications would not be such a shock, it would also be easier to say ‘well, the hearing has not come back’. My emotional state is still a surprise to the doctors – I behave as if I was only waiting for a tooth extraction, and not major brain surgery. I had a chat with Dr S. on this topic (he probably thought I was secretly in a state of nervous breakdown and I need a psychologist or something?). I made it clear that I am not afraid of death or dying, but rather a paralysis, lack of independence, a situation where I would be dependant on others for many years. I mentioned a quote from Fr. Twardowski – ‘do not worry about things you can not control’. He nodded and said that I should be a motivational speaker in hospitals because such an optimistic approach to life in a person waiting for the removal of a brain tumour is something scarce. I replied that if someone has to stress about this whole situation, it is him because he will be standing over the operating table for 6 hours – I will just have a good sleep at a time. We laughed because the statement was painfully accurate.
August 5th, Sunday
The morning before the operation was strange – I did not feel sick at all – I marched up, and down the corridor without losing my balance, the tremor of my left hand disappeared altogether. If it was not for the fact that I had a cherry-sized tumour in my head and an egg-sized cyst, one would think I was ready to go home.
After yesterday’s panic, this time the preparation for the operation went nicely and quietly. The chief anesthesiologist (I had to have a minimum of two on-site) came to say hello and describe the procedure which we will go through before surgery (liar!). Just before noon, I was taken to the operating room.
New faces, they smile. I wonder if it’s a nervous tic, or do they really feel confident? I got an oxygen mask … I was told to ignore the stench of plastic, it’s normal. I’m supposed to breathe slowly, they’ll let me know when they’re ready to shave me, put on extra sensors, give me an anaesthetic…
I open my eyes. It’s darker than before. The familiar faces are bent over me. “Motherfuckers, they gave me anaesthesia without warning” … On the other hand, there is a method to this madness – one does not stress, only drifts away, unaware of what is going on around him. It is simpler for the staff to carry out uncomfortable parts of the event such as putting in a catheter.
I know that something is wrong, but I do not panic – after all, I came out of anaesthesia after 6 hours – maybe those are expected side effects – how should I know? I never had anaesthesia before.
‘David, we have good news, we managed to eradicate a tumour, no radiotherapy will be needed, how are you feeling?’ It was only then that I organised my thoughts and said: “I hear nothing in the left ear, the sound in the right ear is distorted, and the left side of the face is completely paralysed”.
Probably not what they expected.
Well, me neither.
That night was filled with exams regarding the date of birth, hospital name, etc … Somewhere in the middle of the night, a team of people gathered around me – a surgeon appeared and put on some extra stitches because I was probably bleeding – thankfully, after the operation, I was so tired and bemused that I just did not care. I thought maybe someone should tell me how to position myself on the bed because my head was numb and sore so that I did not even know where was this scar and perhaps I should not irritate it more than necessary. I just lay there just as they laid me down after bringing me from the operating room. At this stage I thought that the scar was somewhere on the back of my head – only in the morning, I realised that it is behind the left ear – if I knew it earlier, I would turn to my right side and spared myself hours of unnecessary pain… Well … They gave me access to morphine, but I used the button maybe twice or trice? – I didn’t want to dumb me down with strong drugs – it’s better to take it on the chest.
The morning was like a cold shower – improvement caused by steroids disappeared – the hand was relatively OK, but the legs strength and balance were nowhere to be found – getting out of bed was a challenge. In most cases, I ended up seating on the edge of the bed or standing on shaky legs for a few seconds next to it. It’s good that I had a catheter and it was not necessary to go to the toilet – it would be like a trip to the summit of Mt. Everest. On the other hand, this plastic anchor only aggravated the situation. I could not compose myself to get up with this contraption and pride forbade from asking a nurse for help, I would not let this to be part of my life’s story – a scene with a nurse carrying a sack with my urine attached to my penis via plastic tube while I’m walking down the corridor. Never! I also found another postoperative complication – the vision in my left eye deteriorated significantly – as a result I could not read for more than a few minutes, which made the days even more boring but at the same time, gave me more motivation to exercise to put this behind me. The next morning they pulled out my catheter, and I could start marching down the corridor, provoking nurses’ smiles and occasional panicky ‘do not strain yourself too much!’.
A new stage of life has begun – learning to deal with the effects of facial nerve paralysis and deafness.
Facial nerve paralysis is a strange phenomenon – half of the face behaves as if the dentist has exceeded a dose of local anaesthesia – skin and muscles, even teeth and gums are numb. I can survive that… My biggest problem is with the eye – I cannot close it, I cannot blink – it causes further problems – the brain tries to close the right eye which is already closed, but it tries anyway, and strains the muscles of a healthy eye, which only introduces more confusion. Every few minutes I have to close my eyes with my fingers to let my brain learn what is what, then slowly open my eyes, ‘blink’ with both eyes and so on … In this situation reading or watching movies is not an option, because I can not focus on the screen for more than 2-3 minutes, which in my condition is even more frustrating – I can’t sleep, I can’t read so I end up with the options to either stare at the ceiling or walking. Well, I’m getting more mileage then, again arousing anxiety among nurses who are probably afraid that I will collapse and smash my head …
During one of the next rounds another cold shower. One of the neurosurgeons, when asked about deafness in the left ear, and possible recovery quite abruptly replied ‘you have lost hearing in this ear, do not think about it, let’s focus on what we can fix’. Well, Luckily I’m not a conductor or a musician in an orchestra, because after such a blunt (borderline arrogant) statement I would probably jump out of bed and strangled him… Well … Such is life … Moving on …
They keep asking me if it hurts, they offer painkillers, opiates. I stubbornly refuse. It is difficult for me to answer the question “does it hurt” – it obviously hurts but is it enough to take heavy drugs? I explained my scale of pain. If 10 is a finger crushed in an armed vehicle when I was in the army or a kick with a bare foot to a wooden dowel protruding from the ground during one of my runs, and 1 is a toothache, then my post-operative pain certainly does not exceed 3-4, so I will definitely not dose myself with drugs. In the end, we decided that I would take medications only when objective indicators will show that I am in pain – e.g. decreasing saturation, unstable heart rate. But I just take paracetamol, I refuse to take opiates …
The next few days felt weird and pointless – I felt good and wanted to go home, but doctors insisted that they must keep an eye on me. On the one hand, they knew that nothing could fix what had happened during the operation, on the other side (or perhaps because of unexpected complications?) they did not want to risk a situation when I pass out at home or on the street. I was to be moved to another floor because 3 days after surgery I was no longer eligible for intensive care, but somehow every time one doctor announced during morning rounds that I will be moved that day, another was announcing that they will keep me around for a bit longer. I guess if there were another patient in need, they would move me right away, but the days passed, and I still used the privilege of ICU nurses’ care. Fortunately, at some point, a room in the second part of the corridor became available (technically not the ICU anymore, but a regular neurological ward) so in practice, I landed in a one-bed bedroom with a TV set – like a sanatorium ladies and gentlemen! Luxuries, even with a view of the Castle, so one night I could watch the fireworks ending the military tattoo at the Castle. I immediately noticed a different level of care – no more tests every hour, but maybe 4 times a day, the last check was about 10PM, the next at 8 AM – I sleep all night!
Nurses no longer jump around me, do not watch my every step, I start to feel like in a regular hospital – no one cares for you unless you ask for help – sometimes for many hours no one enters my room. I am asking for help only in one case – taping down my eye at night, although after 2 days I started doing it myself – in the end, I will have to do it for at least half a year, if not longer, so it’s better to start practising.
Another doctor showed up and did not achieve much with me – after 15 minutes, the speech therapist said that she could not teach me anything because I figured out all necessary exercises (google, babe, google!) by myself. And I was able to speak in a way that was understandable to the recipient. Similarly, with face and eye exercises – videos on youtube are more informative and coherent than the brochure prepared by the hospital. The ophthalmologist confirmed that one of the symptoms that disappeared after the steroids therapy, appeared again – damage to the optic nerve, which manifested itself by the trembling of the left eye and, as a result, the impression that the room was spinning.
When I asked if it would pass, the answer was embarrassing silence … Oh, dear… Another thing that I will have to make my peace with? As it turned out, my crazy brain coped with this problem in less than 3 weeks after surgery (That reminded me a line from some sketch – ‘miracles we accomplish in a week, for the impossible things you would have to wait a bit longer’).
I wonder if my brain can deal with the rest of the problems in such a way …
So far, the left ear sounds like an out of tune radio on AM frequencies – a bit like a ‘white noise’ but higher – no external stimuli. I am not setting my expectations at any height – why torture myself with false hopes? If by some miracle the nerve fixes itself it will be nice, but it’s better not to be disappointed. It’s good that at least the balance returns to normal – I can walk relatively normally, especially at a quick pace, with long strides. There are a lot of problems with small, precise steps, but there is no comparison to what happening before and shortly after surgery. I walk down the corridor all day or practice heal-to-toe (with precise movements there are imbalances, but doctors ensure me that the brain will learn to deal with it, I need to practice).
August 10th. It’s time to go home.
The neurologist who I met a week ago came to visit me and say goodbye. It turned out that I caused her a sleepless night because she was worried if I would survive. The head injury during the fall (considering the size and location of a tumour and cyst) might have killed me in a few seconds. I was comforted that the nervous system in this area of the brain is known for extremely active regeneration – after a tumour is removed, the brain decompresses – the tissue will fill the empty space, the inflammation will come down, the nerves will begin to regenerate – it can last for half a year or more, some symptoms may disappear by themselves. I hope so. All this drama before surgery was to avoid damage to the facial nerve, but it ended up with paralysis of the left side and loss of hearing – no one even mentioned that possibility before surgery! Maybe they did not damage the nerve, but it’s only irritated by the swelling and movement during the operation? If the rest of my brain behaves like the area responsible for the optic nerve, then I can be a moderate optimist.
I’m coming back home.
Ride in a car makes me realise how terrible my hearing is. I hear the tires scratching on the asphalt, but I can not hear the engine and the cars around me. Sounds sound like I’m sitting with a bucket on my head – everything is booming, voices are distorted. The idea of driving a car needs to land between fairytales for a while at least…
In addition to the eye, which is a nuisance, the most troublesome is that weird fatigue – al it needs is to get up quickly, after a few seconds I can feel the blood rushing to my brain like a punch the back of the head… Generally, I do not feel bad, I want to go back to work because at least someone will pay me for sitting on my butt. Intellectually, I feel 100% efficient, the only distraction is the eye that requires constant attention. Krissy -the office manager – insists that I have to ask for the opinion of my GP. Okay, phone to my surgery – my doctor is on vacation but has access to a computer, the lady from registration desk will ask for guidance. Call back after 20 minutes – a categorical ban on returning to work – after such an operation I have to rest, avoid stress and fatigue. I did not expect this, but luckily Krissy already set everything up, and nobody is making a fuss about it. Well, we are resting then.
In order not to go crazy, I set myself a series of tasks, the purpose of which is to train the brain in one form or another. Guitar playing, programming and … Calligraphy … My handwriting was horrible since always. Teachers often referred to my writing as ‘doctor’s scrawlings’, and at secondary technical school, I went on minimum passable grades when it comes to the technical calligraphy. I need to use that opportunity and force my brain to learn how to control my hand better?
Even if I won’t be able to write beautifully, at least I will improve my mood because apparently, the brain regains full control over my hand – what a nice change after what was happening a month earlier, when I couldn’t even control a computer mouse.
Although I do not see any sense in it, I exercise my face every day. Massage, exercises, massage … I also recorded a few short videos to have a comparison and control the progress (if any).
Maybe these exercises are not that dumb after all – I noticed better control over my lips. The muscles on the left side are still dead, but I have noticeably better control over the lips – at least I don’t spit like a baby anymore.
Apparently, I speak more clearly. I do not feel that from my perspective – I still have the impression of trying to talk after a dental procedure with local anaesthesia – the voice is distorted, I mumble, I lisp, but my wife says I speak more clearly. Maybe you will need to record my voice for reference? It’s good that at least there is a consensus in the company that I should stop answering phone calls because younger employees have plenty to learn in that area.
I’m back to work on Monday – I am secretly blocking tickets to have something easy to do, although probably no one will demand 100% performance from me. My GP put the information about my operation in the healthcare system – apparently, it saves a lot of stress when an ambulance had to be called. Just mention the entry in NHS system about my surgery, and if the problem is related to the head, the ambulance dispatcher will not get involved in pointless discussions and will send someone immediately. I hope that there will be no reason for me to take advantage of that in the future.
Finally, I forced myself to take a walk around Holyrood Park – I tried to do that maybe 10 times in the last 2 weeks, but every time either the weather or the eye or fatigue stood in my way. In the end, I forced myself to walk at a rapid pace, to avoid balance issues – I sweated like a ferret, but it went well…
I pay the price for yesterday’s march- surprisingly strong imbalance. Fortunately, my wife bravely holds my hand when we are outside.
Another long march. This time about 4km … Sometimes I ‘dance’ on the sidewalk, but generally, it is okay as long as the wind does not blow too much and there is no strong sunlight.
Facial paralysis does not go away, I do not see any progress in therapy … Last hope in the plastic surgeon and a gold plate which he can put in my eyelid to facilitate a little bit of control over the eye.
My eye definitely does not like the wind – all it takes is half an hour in a strong wind, and the eye refuses to cooperate altogether – the only way to calm it down is flooding it with lubricating eye gel and taping the eye down for an hour. I can already imagine what it will be like when winter comes. I guess I will have to walk in the pirate eye patch and ignore stares from passersby 🙂
An hour-long bus trip to the nearby town of Livingston to the hospital where the plastic surgery department is located. It began as usual with an interview conducted by a young doctor, he also performed some preliminary tests confirming my condition. It turned out that I am his first case in this hospital (or ‘ever’?) and he will work under the guidance of a consulting doctor. After the examination, the “youngster” moved to explain possible therapies, but he probably realised that he might have overstepped some boundaries here, as his boss might have different ideas. He went away, looking for the consultant. After 10 minutes Dr A. appeared (quick check on the internet – the guy has a few titles after his name, that’s good). He scanned my face for a second and began to iterate a long list of problems starting from the top and working his way down the face, and we moved to discuss my options, what can or cannot be repaired so that I could make an informed decision. That’s right – I am about to make a decision regarding surgeries – they can only SUGGEST. Forehead muscles – nothing can be fixed, he can just slightly raise the skin on the left side so that it does not weigh over the eyelid. Apparently, Botox can be used to weaken the reflexes of the muscles on the healthy side – that will make the forehead look more symmetrical. The eyebrow itself can also be slightly raised so that it does not bother me too much – things that are not a problem for me yet, I will not push for surgery for those reasons alone… The eye … The most urgent agenda for me… He immediately agreed with my statement that the golden weight in the eyelid is the simplest and the fastest a way to improve my condition, additionally suggested the operation of the lower eyelid, so it adheres better to the eyeball and thus saves me the surgery in 10 years or when due to age, the eyelid will drop naturally anyway.
The facial nerve … As I predicted, here is the biggest problem – on the one hand, you have to give the body time to recover, on the other hand, the clock is ticking. Facial muscles, when not stimulated electrically by the nerve, will start dying in a couple of months. The only way to revitalise the face after that would be transplantation of muscle fibres from a thigh, which is a high-risk operation – after all, leg muscles are not created to move the skin of the face. Such a procedure will not give me back full control over my face -that’s for sure, and with a high degree of probability will cause problems with mimicry which will be strongly twisted by the muscles not adapting correctly to a new role. Therefore, it is necessary to perform some sort of surgery relatively quickly (12-18 months) that will lead to muscle stimulation on the left side. When I was in a hospital, Dr S. mentioned nerve surgery (nerve graft), and my research on the internet indicated that this operation (or at least two to be precise) is fraught with the risk of weakening or even damaging of the healthy nerve – That’s not a nice perspective, isn’t it? – I have already depleted my limit of bad luck when it comes to surgical operations. But it turns out that there is another possible path. The use of nerves from another muscle group on the same side of the face. You can divert the nerve from your jaw muscles, which theoretically will turn them off, but the jaw is, of course, ‘supported’ by the muscles and nerves on the other side so there will be no significant impairment of the function. Then I only have to teach the brain that when I want to smile, it needs to send a signal that I want to clench my teeth 🙂 Absolute circus, if you ask me… But considering the level of difficulty of both operations and possible complications, this option seemed the most reasonable to me. My brain demands success – a surgery that requires a transplant of the nerve from the leg to the face, where half of the facial skin will have to be detached from the bone to put the nerve down, seems to be very risky at this stage and I would be hardly able to withstand another failure. A connection of nerves on the left, though it sounds bizarre, seems to make the most sense because even if something goes wrong (at this stage I have to assume that something may go wrong), the damage will affect the side of my face that is already broken so disappointment will be less severe…
So, they put me on the waiting list, I was informed that I should not make any plans to leave the city for the next 6 months, because if anyone falls out of the list for any reason, I get a phone call and I have to be ready for surgery the next day.
At the end of the consult, we visited the guy responsible for preparing the plates, later used to weight down the eyelid – a quick fitting, and it turns out that my eyeball is of standard size and the plate must be 1.4 grams of weight. Oh, how pleasant was the feeling when, after sticking the plate onto the eyelid with double-sided sticky tape, I was suddenly able to close my eye, even slowly blink … Of course, I had to ask – how quickly can you put it in ??? Unfortunately – due to the price of the material (I assume it has more to do with the purity of the material and its certification for medical purposes, as gold itself – 1.4g costs some 45 pounds, I -could pay that from own pocket to speed up the operation), the waiting list is long. The procedure should be done in about 12 weeks, and it will require full anaesthesia, but fortunately not as long as a neurosurgical one. I should stay in the hospital for a maximum of 2 days.
Well, I’m waiting for a letter from the NHS – moderately optimistic about life.
Another letter from the NHS. This time they invite me for a pre-operative consultation (whatever that means). At the same time, another letter arrives that states that the operation should “take place” within 12 weeks, but if they can not do it in time, they will refer me to the facility ‘outside of the NHS’ – whatever that means … To my understanding, the operation would take place in a private clinic for NHS money. The only question is, will I have to pay for the surgery first and the NHS will refund me, or will it be a cashless exchange between NHS and the clinic?
I do not feel any improvement when it comes to the face. Today it is somewhat worse. I don’t know if it’s a migraine or sinuses, but the area around my eyebrows hurts like never before. The thought that face can be dead and yet hurt so much at the same time is depressing.
I’m distracting myself by drawing. One of those days when silence is unbearable… More clearly than every day I hear squeaking noises in my ear. On a daily basis, hearing loss does not bother, at most, it arouses smiles when a colleague stubbornly approaches me on the left and starts talking to a dead ear – usually takes me half a minute before I realise that someone stands beside me and wants something 🙂
Two marches over 5km. I still do not run. A strange taste in my mouth indicates that something is still wrong with the brain.
Time to move on with my life. The first step (and the most terrifying) – return to running. I have 14 days left until the last race scheduled for this year – 10km near the University of Stirling. As part of the preparations – ‘Race at your pace’ – something small starts – 25 miles a month. In the worst case, I will go home several times on foot to get miles if running does not work out. I still doubt my strength – I do not want to end up in the hospital if it turns out that the brain is not yet ready for shaking.
Two days ago I finally got back to running. 5km done! The negative aspect is that it still hurts today 🙂 Fortunately – just my legs.
Today was supposed to be the second day of training, but the pain of my calves and thighs made it clear that I choose my battles.
Postponing the training til Saturday.
10 days left.
There is no progress in recovery – the only difference is that I can deal better with obstacles, so the situation is less problematic. I only noticed a difference in the “numbness” of the face – previously the tissue slightly sore. Now the feeling is much milder.
I do not know if it’s good or bad … Maybe the nerves are dying already. Perhaps I have to go back to the regular massages and exercises that I gave up last month because they obviously did not work as intended – control over the face will not come back by itself – it became painfully obvious long ago …
No response from the NHS is beginning to worry me. I hope it doesn’t mean that I will have to seek help outside of the system. I still expect that the ‘pre-operative’ visit will accelerate the entire decision-making process and the bureaucracy will move their ass.
I noticed a progressive decrease in “numbness” of the left side, but the control over the muscles does not come back. I still wonder what it means. I try to remain optimistic, but it starts to look like making a good face to a bad game. How long will I be able to pretend that everything is OK?
It is not and will never be. No surgery available at this time will fully restore the pre-operative efficiency. Maybe surgeons could restore some partial fitness of some muscle groups so that I can smile, tighten my eyelid with gold or even my forehead with botox, but it is far from full fitness.
Am I even cured? The next MRI scan which will take place a year after the surgery will show if a tumour is growing back. And what if it does? Subsequent operation? Radiotherapy? Chemotherapy? Any of the options worse than the previous one.
It’s good that I returned to running. Masochism makes it easier to deal with the rush of thoughts…
Slightly useless ophthalmology consult scheduled for tomorrow – little has changed except the fact that the brain healed the optical nerve. Maybe this is the only reason why you should go – see the face of a doctor who 2 months ago suggested that the nerve would never heal.
Ophthalmology consult went as expected. I managed not to damage the cornea, the sight got worse slightly – I was unable to read the lowest line on the board. The doctor hid the surprise when it turned out that the optical nerve was in order. Next visit in January, practically to confirm that I am an adult, responsible person and I care about the eye. Pity …
The moment of truth went without any crazy episodes. Stratharron 10K race – an offroad course in the mud with a lot of hills to tackle. I did not beat any records, but I also did not die – it’s good! At least one optimistic message…
A preoperative visit to the hospital had one central theme … ‘No’ … I do not even know how many times I answered that way to a river of questions about allergies, the history of my diseases and in the family. In the end, we agreed that I am healthy as a horse and ready for surgery.
The date has already been set – November 16th. Funny enough, when I got home I found a letter from the NHS which informed me about the date of the surgery. It’s about time because I feel that the left side of my face is slowly dying.
I decided to take part (once again) in the Men’s 10K race on November 4th. This time in Edinburg (the previous one took place in Glasgow) so at least no travel required. I hope that I will survive the race and will not end up in the emergency room 🙂 This is the last chance for me to race – my surgery will take place on November 16th and after the surgery, I can probably forget about running for at least a month. I struggled with this decision for a long time to be honest – I have nothing to prove anymore, but in the end, I signed up. It will be nice to finish this running year with a race that (contrary to the most significant events like EMF) actually takes place in the Old Town and the city centre. My brain demands success after all those failures of the last few months and participation in the race gives a good kick of adrenaline and endorphins when something is achieved as a result of my own stubbornness. You do not run for medals or t-shirts. You run for this weird feeling when endorphins kick in when you cross the finish line gasping for air.
I decided to push my boundaries yet again… This morning started nice and slow and ended up with a 25km run, the best half marathon time in 2018 and some other ‘personal bests’ or ‘second bests’. Only original EMF from last year was faster. I never thought I could achieve that less than 3 months after the brain surgery.