I was taken to the operating theatre at about 8.30am. My surgery lasted about three hours and at about midday I woke up in the recovery room. The nurse asked me if I felt OK and after realising my surgery was over, I told her I was OK. I then realised I could speak. I could also wiggle my fingers and toes so I also knew I wasn’t paralysed. My very first thought was “If I can talk and I can type, I still have a job”. Within an hour I had drunk water and ate a sandwich and could do both without difficulty or being in pain. However, it became very clear very quickly that I wasn’t in full control of my own hands as well as being unable to walk at all (my right leg could do very little – wiggling my toes was about the limit of my movement). I was also catheterised for the first time in my life.
After eight hours in the recovery room (I should have only been there 1-2 hours but there were no ward beds available) I was moved into a ward just after 8pm with some very serious cases (mostly with individuals who had gone through major brain surgery). All of us on the ward had to have our ‘obs’ (observations – blood pressure, heart rate, temperature, blood sugar, etc.) taken hourly right through the night (so I got no sleep at all). I also had horrendous spasms in both my legs (over 1000 a night for the first week). I was put onto a drug called Baclofen (which I’m still on now).
The day after my operation was not the best. Because of COVID-19 no patients could have visitors. I briefly spoke to my partner on the phone. That was the day’s only highlight. I realised that I couldn’t do basic things with my hands like eat with a knife and fork or hold a pen. The latter really upset me. I keep a very detailed hand-written diary so not being able to write in it was very upsetting for me. I was also unable to give myself a wash so for the next few days I was given a daily body wash by the hospital staff. I couldn’t even hold a toothbrush properly to brush my teeth. I found the whole experience demoralising and degrading. Not being able to shower was horrible. Anyone who knows me will tell you how important showering is to me and my mental health. I shower a minimum twice a day. Not being able to shower felt like an abuse of my human rights. I never felt clean after a body wash. On the day after my operation, it became clear I wouldn’t be going home that day and it soon became apparent that I would be in hospital at least a week.
After a few days, some of my hand functionality began to return. I could just about use a knife and fork and I could pick up a flannel to wash my own face. However, holding a pen and writing with a pen was impossible. Unlike the other patients on the ward (a couple of who were sedated almost 24 hours a day), once I had awoken, I spent the whole day out of bed sat in a chair. I had my iPod so listened to a lot of music but did little else. Couldn’t hold a book or magazine long enough with my hands to read.
On Tuesday (April 20) I had my catheter removed. That seemed like a huge step forward. My partner also dropped my laptop off. I was unable to see her but at least it meant I could Skype her and my children. I also realised that typing was something I could so with my hands relatively easily. Writing a few emails was also good therapy for my fingers and I had a link to the outside world (I don’t have a smartphone, gave up using one in 2019). The hospital physiotherapists had given me hand and leg exercises to do and I spent a lot of time using the ward rotunda as a mini-gym. No-one else was capable of using it (as they were all confined to bed) so I had it 24/7. I was moved to another ward which I was told was “good news” as it meant I needed less specialist care. On Wednesday (April 21) I begged the doctor to allow me to shower. He said I could have one as long as I didn’t get my post-surgery dressing wet. Had to shower in a wheelchair (surreal to say the least) but despite this, it was heavenly to wash my hair and feel clean after six days of humiliating body washes. My dressing was drenched but I didn’t care. I felt clean and alive. I felt co-operative and communicative.
Just after the shower, I had an unexpected visitor. A doctor visited me and told me that I would be leaving Queen’s Medical Centre and would be moving to another hospital (City Hospital) to a specialist rehabilitation unit (Linden Lodge). She said she would try to get me a bed there for that weekend and that I would probably be there for 4-6 weeks. My emotions were mixed. I was glad to be moving to a place with dedicated and specialist care, but was surprised to hear that I would be in hospital for another 4-6 weeks.
At lunchtime that day, I got the unexpected news that there was a bed at Linden Lodge that evening and I was told to pack up all my stuff (not that I had much to pack). At 7pm I was transported by ambulance (first time I had ever been in one) over to my new temporary home. I was given my own room (which was great) and I unpacked the few things I had. My partner had dropped off clothes at the unit but again I was unable to see her due to the COVID-19 visiting restrictions. At one point in the evening, I decided to sit on the floor rather than the bed to get undressed for bed (I found it easier than being on the bed). When the nurse came in and found me sitting on the floor, she thought I had fallen (I hadn’t) but recorded in her notes that I had fallen.
On the Thursday morning (April 22, one week after my operation) I began life in Linden Lodge. I wasn’t allowed to shower until I had been “assessed” by an occupational therapist. I finally managed to have an unsupervised shower (in a wheelchair) early afternoon even though I was not “assessed”. I also moved room nearer the nursing staff because I was deemed as someone who needed to be watched more closely because they thought I had fallen on the floor the first night I was in here. The more I protested the less they believed me. It was even written up outside my room that I was susceptible to falls (which was true prior to my operation but not something I had done in hospital).
Since then, things have gone slowly. I was told after my initial assessments that I would likely be here for three months (i.e., until August). However, I left hospital on June 22 (after 67 days in hospital). The hardest thing I had to deal with was (until about 40 days into my stay) the ‘no visitors’ policy. I did see my partner a couple of times outside the unit through the iron bars (which felt a bit like being in prison). Over the past 12 weeks, a lot of my hand functionality has returned although I still have some difficulties. There are things that I now consider easy (typing, eating with a knife and fork, sponging myself in the shower), some that I can do but have to focus (writing with a pen, putting socks on, washing my hair, brushing my teeth, doing a crossword), and some things which are very difficult but I can do (e.g., shaving, tying shoelaces).
The first Sunday I was in the unit, I found a sentence that had all letters of the alphabet (“Pack my box with five dozen liquor jugs”) and spent hours trying to write it out in upper and lower case letters with a pen. Very difficult and very time consuming (but I did it). Over the next few weeks, I started to write my diary again. I began by writing the days events in bullet points in capital letters (writing in upper case capitals was easier than writing in lower case letters). I then progressed to writing the whole day’s events but all in capital letters. On May 19, I started writing my diary “normally” again (i.e., in sentence case rather than in capital letters). I use the word “normally” advisedly. I’m still very slow writing with a pen and it’s not the most legible, but any activity I do with my hands I still call “therapy”. As I type this, I still do not have full functionality in either of my hands and I have resigned myself to the fact that I never will.
You can read Part 1 of this blog here.
Dr. Mark Griffiths, Professor of Behavioural Addiction, International Gaming Research Unit, Nottingham Trent University, Nottingham, UK
On April 15 I had an operation to decompress my spinal cord and to have the C5 disc in my neck replaced with a new titanium disc. I ended up in hospital for 67 days. Here’s the back story (no pun intended).
For the past 18 years I have lived with a compressed spinal cord. Although I had the condition since 2003, it wasn’t diagnosed until an MRI scan in 2007. The scan showed that the C5 disc in my neck was completely herniated and that the disc was pressing directly onto my spinal cord causing hundreds of electric shocks every single day. I was prescribed daily amitriptyline which significantly reduced the number of shocks I felt. I was also prescribed heavy duty painkillers (dihydrocodeine) but I soon realised that work was the best analgesic in the world. Instead of taking up to four doses of dihydrocodeine every day, I worked (and worked). I rarely took more than four doses of dihydrocodeine a year let alone a day. I was also given details of an operation I could have but just the very thought of it scared me – especially because of the risk of being left paralysed from the neck or chest down. I was told to come back if I changed my mind about having an operation.
I am not 100% sure what caused the complete herniation of the disc in my neck but I suspect it was a minor traffic collision I was involved in at the beginning of November 2003. I was sitting on the front seat on the top floor of a double decker bus when a taxi crashed into the right-hand side of the bus and I was propelled forward onto the bus’s front window where my head hit the glass window, smashed the glasses I was wearing, and left me concussed. I was highly stressed that day because I was on my way to have a CT scan to look at swollen lumps in my throat for suspected Hodgkin’s or non-Hodgkin’s lymphoma. Later that week I had a lymphadenectomy and the biopsy showed that I didn’t have cancer but was diagnosed with toxoplasma lymphadenitis. It was after this operation that I began to get the constant daily electric shocks (over 100 a day) every time I moved my neck. I assumed that the constant electric shocks were as a result of my operation but I was later told that the shocks were being caused by a compressed spinal cord and that my lymphadenectomy was not the cause.
Over the next decade or so, the pain caused the constant compression of my spinal cord got progressively worse. Walking became increasingly difficult but I used excessive work as the strategy to suppress the increasing physical pain. In short, work became the perfect distractor task. When I was 100% cognitively engaged (e.g., giving a paper or teaching, writing or editing papers, etc.) I was in no pain whatsoever. I returned to the workaholic tendencies that I had before I had children. One of my consultants also described me as having “unspent youthfulness” which masked my medical condition for years.
The lifestyle I was leading in the years leading up to my operation probably didn’t help. I was travelling excessively averaging 20-25 overseas trips a year for conferences, consultancy, and research meetings. Walking became increasingly difficult as I was unable to lift my right foot properly. During 2019, I had a number of really bad falls abroad (tripping over because my right foot wouldn’t lift) including three in Abu Dhabi and a couple in Auckland which left me with horrendous bursitis on both of my elbows.
During the lockdown period, my health deteriorated badly. I was not globe-trotting anymore and I was housebound for over a year. My working life (and social life) became increasingly sedentary. I was doing everything from home including all my teaching. I had not stepped foot in my university office since the end of February 2020 (and still haven’t).
In August 2020, I saw one of my consultants and told him that my health condition had got significantly worse and that I now wanted the operation. However, because my surgery was classed as ‘elective’ as opposed to ‘urgent’ a date for surgery never came as the Nottingham hospitals were full of very ill COVID-19 patients. At one point during the pandemic, Nottingham was the UK city with the most COVID-19 infections. By February 2020 I could hardly walk and was becoming increasingly immobile. I rang my consultant’s secretary every week asking if I could have an appointment. I finally got one at the end of March 2021 and after seeing how bad my mobility was, I got an operation date very quickly. Thursday April 15, 2021. I was told by my consultant who was performing the surgery that he expected my to be back home the next day if the surgery was successful.
I have to be honest and say that the operation still scared me. Although there was a small chance of dying, that didn’t worry me. It was the thought of waking up paralysed which dominated my thoughts for over a week prior to the operation. Loss of limb use. Loss of job and livelihood Loss of identity. Loss of salary. There are many risks with any operation but spinal surgery carries many extra risks. I was told that some of the consequences could be eating and drinking difficulties and voice loss (as they would be carrying out the surgical procedure through the front of my neck and having to decompress my spinal cord by going via my trachea and oesophagus). I told my consultant that I would rather be dead than paralysed from the chest or neck down.
As the day of the operation approached, I again used work to block out my fears and negative thoughts. On April 15, my partner dropped me off at the hospital at 7am in the morning. Before my operation I had talks with the anaesthetist and one of the surgical team. I then had to sign the consent form which included a very long list of all the things that could go wrong. However, the weeks prior to my operation were surviving not living. I felt I was in the last chance saloon.
Dr. Mark Griffiths, Professor of Behavioural Addiction, International Gaming Research Unit, Nottingham Trent University, Nottingham, UK