My Legs Don’t Work Properly — Part 1

TL;DR: I need to figure out how to walk again, and am currently in hospital undergoing therapy and enjoying the use of an NHS wheelchair.

This is going to be a series of posts over the coming days and weeks to discuss what has been perhaps the most emotionally distressing and physically disruptive event in my life. The situation is not resolved, so I don’t know what the ending looks like yet, but I’m going to write as I go.

This particular post focuses on the lead-up to treatment, and the immediate aftermath of that treatment. Future posts will focus on different aspects of recovery.

Part 2 is here and discusses the physical and mental work ahead.

Part 3 is here and discusses the first week or so of full-time therapy.

Part 4 is here and focuses on seeing the improvements and making plans for the future.

Part 5 are my thoughts my first day home after discharge.

The details of the symptoms and immediate treatment are all in this post. The future posts are going to be a little harder going for entertainment value, and mostly are for my benefit as a journal, but if you are close to me, you might garner something from them that might help you understand the changes I am undeniably already undergoing as a human being.

In the early hours of the 9th April I woke up needing to use the bathroom. I’d been sleeping on the sofa to reduce the amount I needed to move and aggravate what I assumed at the time to be a lower back pain. Not wanting to wake my fianceé who was tucked up in bed down the corridor in our home, I tried to move to the toilet alone — something I had not managed to do for days. I fell over, and was unable to get up. Becca was called from her slumber. She could not help. An ambulance was called, and we arrived at the hospital near the end of our road at 3am.

I’ve been in hospital ever since, and am unlikely to leave until May, at the earliest.

A few weeks prior, on the 25th March, I went against my normal Saturday routine of going to the pub in the afternoon, watching some horse racing and having a few pints. It was the last day I remember being close to normal.

In the morning I worked a little on some side projects, and being a beautiful day and having not had much exercise in a few weeks (dodgy ankle), decided to go for a walk about 2pm. I walked from near Hammersmith Bridge down to Putney Bridge, stopping occasionally to enjoy the view of the Thames and to reflect on what a lovely day it was. I noticed I was very thirsty, and drank 750ml of water in under an hour.

By the time I got home I did not feel particularly well. Flu-like smyptoms were dominant: I was aching, perhaps from the walk; I felt run down; I felt a little cold. I told my fianceé that I was going to go to bed for a lie down at 4pm. I stayed there all evening.

At around 3am I woke up freezing cold. My teeth were chattering. Becca had to find another duvet to try and warm me up. I noticed by feet were cold, a little numb, perhaps.

The day after I felt a pain in my back inside my left shoulder blade. I remained clammy and had cold sweats. Paracetamol and cocodamol were balanced to try and deal with the fever and the back pain that was now becoming quite sharp.

The following week was a mixture of back pain, discomfort in my abdomen (perhaps caused by an onset of constipation — sorry if you’re getting too much information here), and during several nights I did not manage more than a couple of hours rest. I attempted to work, but was pretty washed out.

At some point around the Wednesday I noticed my knees and feet had become a little numb, and then my calfs and upper legs. About half the sensation was gone within a day or two. I had been taking laxatives which caused more abdominal pain (Dulcolax is evil, I’ve since discovered the people who need such things regularly recommend Movicol, if you should ever need that knowledge), and the pain killers were barely making a dent.

By the following weekend I was finding it difficult to walk, my legs had become almost completely desensitied to touch and I had become “flat-footed” when trying to move (i.e. I couldn’t lock my knees and remain stable). Nothing seemed to be improving so on the Monday, the 3rd April, we were able to walk very slowly and unstably around the corner to the doctors at Charing Cross hospital. The Urgent Care Centre in the A&E department evaluated me, and decided I needed further investigation.

The doctor who further evaluated me focused on two things that jumped out: I’d had a fever, and then developed a numbness in my legs. This is a possible early indication of Guillain-Barré Syndrome, and so he wanted me evaluated further by the hospital medical team.

I was admitted into hospital, given a wrist-band, cannulated, bloods were taken, a chest x-ray was done, and I was told to wait for the medical team.

The medical team doctor who evaluated me explained that to rule out GBS I was going to potentially need a lumbar punch, but perhaps a neurological examination would give them enough confidence I was OK.

For the unfamiliar, a full neurological examination involves lots of touching and moving of various muscles of the body and the doctor evaluating how strong those muscles are by pushing against you, or asking you to squeeze/contract muscles. One of those muscles is the rectum, which is checked by squeezing the doctors finger inserted within. Delightful.

My evaluation showed good power/strength, no loss of bladder or bowel control which was all ruling out GBS, but I had some tenderness around my lumbar spine (L2-L4), so I was discharged with some naproxen and diazepam, booked in for an MRI in a week or two to double check things, and advised to rest up a little but to keep my lower back active — the numbness was classic lower back pain, which may have caused the bowel slow down as well.

My employer provides private health insurance. I asked the NHS doctors if I should trigger anything in my policy. “Wait until the MRI scan, and if they find something, talk to Bupa then”, was the advice.

We slowly, carefully, and with some wobbling, walked the short distance home around the corner.

The next day I was able to walk a few hundred yards, albeit with difficulty. That week I tried to work a few more days, but again, sleep deprivation and the distraction of pain made life difficult.

By the Friday I was needing Becca and a crutch to even make short trips to the toilet. I was no longer in pain, just my legs were not as stable as I needed them to be.

The Saturday was worse, but I managed to enjoy the Grand National (I even had a winner), and that night, you alreay know what happened: I fell, and in that moment both I and Becca knew the gig was up, I could no longer attempt to self-medicate, she could no longer play nurse.

Initially the A&E doctors presumed back pain once more. They suggested they put me into a ward (Clinical decision unit) for 12 hours, give me some diazepam, and I’d be walking home that night. Becca and I, a little slack-jawed, pointed out that we had tried this dance before, and perhaps — just perhaps — that was not going to fix it this time either. Fine, the doctor said, let’s just see.

The diazepam made no difference. What followed was a chain of confused doctors. The medical team thought neurology needed to take a look. Neurologists wanted infectious diseases involved. The fact I was not incontinent confused some, reassured others.

An MRI scan on the Monday morning showed mild degeneration of my lumbar, but nothing atypical for my age and weight. That night a couple of registrar neurologists posited a view after an extensive evaluation: perhaps, they pondered, it was transverse myelitis.

It does not take much reading up on TM to terrify you. A third of people make a full recovery, a third a “fair” recovery, and a third no recovery whatsoever. There is little a doctor can do to affect which group you end up in (although some thing throwing steroids through your system can help, others disagree), so it’s basically a random outcome, with more certainty for those patients where the symptoms took days to onset rather than hours.

The charities who produce documentation for those suffering transverse myelitis pull no punches and in the introductory paragraphs use phrases like “your life has now changed forever, and will never be the same”.

Once again, I brought up going private. “I don’t do any private work”, the neurologist told me, “and I don’t know anybody with experience of this who does, either. The best you’d get is the same treatment but with a private room”. OK, no, it’s fine.

That night I pondered a future for me and Becca with me in a wheelchair permanently. I told her that if it was too much for her to deal with, if she felt she needed to leave me, it would be heart-breaking, but I’d understand. I am not ashamed to admit that this conversation was more emotionally painful than anything physical I had felt to that point, but I did not want her to feel trapped by this sudden and potentially permanent diversion in our life plans. Thankfully, she decided that I was being a moron by even suggesting she would want rid of me.

The lumbar scan showed nothing extraordinary, so the next morning I was sent for another MRI scan for my thoracic spine. To complicate matters, my HBA1C blood tests (did I mention by this point I’d had 8 blood cultures and about 20 blood tests done?), suggested I was borderline type 2 diabetic, so diabetic neuropathy could be a factor. I had also suggested that whilst in the MRI machine they check my brain for plaques indicative of multiple sclerosis (my maternal grandfather had MS), but they didn’t have time on this scan— they did do this a week later, which thankfully showed as clear — but what they did spot was an abscess pushing against my spine.

Ah ha! A cause! And not transverse myelitis to boot! We were getting somewhere now, perhaps.

An image — even an MRI image — can’t tell you what an abscess is composed of. Much conversation was had about any back trauma I might have suffered. Falls, hits, smacks, anything which could cause a blood clot? No, we could think of nothing. That left an infection as the likely culprit.

This infection sat between my verterbrae and my spinal cord and was causing a compression which meant nerve signals were getting lost and confused, the conversation between my brain and legs getting cut off.

I was placed on the emergency list for surgery, and sent for a CT scan to help the surgeon work out a path into this tricky spot with the minimum of disruption.

When the anaesthetist arrived to evaluate me, my first words were “It’s nice to meet you, but before we begin: I have mild sleep apnoea”. No anaesthetist about to put a heavily overweight man under a general anaesthetic really wants to hear this. I had surgery back in 2011 which required a general anaesthetic in Manchester, and they’d put me in HDU because of it, so I made sure to let them know it was a factor before anything else came up.

My sleep apnoea is compared to many sufferers, quite mild: I don’t get drowsy during the day, so I’ve never even had it properly diagnosed. Sometimes I snore, and then stop breathing for 30 seconds, and then start again. It scares Becca, terrifies some anaesthetists (because the night after the anaesthetic wears off I can stop breathing and then just not ever start again), but in general I just live with it.

My operation was put on hold by the consultant anaesthetist as she was insistent that post-op I would go into intensive care for monitoring and possible resuscitation if the need arose. Fine.

At this point I had been in a ward next to A&E called Clinical Decision Unit — a ward without natural daylight — for three days. I was glad to be moved to a normal ward, and saw a sunset over South West London. It was beautiful. In the distance I could see Richmond, the town I work in, and remembered what normal life looked like, a life I’d had just a couple of weeks earlier. I became morose, but looking around me I realised it could be worse.

That night I went onto nil by mouth, and a surgical consent form was produced for my consideration.

Surgical consent forms are a means whereby you as a patient are told what the risks are of the procedure you’re about to undergo are, so that when you agree to it, if something goes wrong, you can’t sue. I might be being flippant — they serve other good purposes about informing a patient as well — but ultimately, that’s their main reason for existing.

They could probably reduce consent forms to “I hereby consent for the surgeons to mess me up, maybe kill me, whatever, it’s all cool, ‘k?”. Mine was a little terrifying. My surgery had more risks than I had considered in my naivety.

For starters, they were going into the area near the spinal cord, obviously. Accidents happen and this part of the body is not a great place to have a slip of a knife: I might be paralysed. Large amounts of blood can be lost and a transfusion might be needed. Cerebral spinal fluid could be lost. I had numerous complications that could make the anaesthetic procedures dangerous. I have a case of psoriasis (which coincidentally flared up massively shortly before all this), on my upper back which could make choosing an incision site difficult, and healing harder than normal.

Finally, the purpose of my surgery was not to “fix” my legs. It was simply to stop them getting worse. “Recovery is a nice side-effect we see in 60%-70% of patients”, I was reassured. I signed the form, didn’t sleep much, and in the morning messaged Becca and told her what arrangements she needed to make in the event of complications and her needing to claim on my life insurance, whilst trying to reassure her it would all be fine.

It’s fair to say by this point, mild terror was the dominant emotion. My routine observations showed a high pulse and blood pressure. I was told the operation would happen around lunchtime, and I would need to shave my beard beforehand: the stubble on my chin would stop the sleak being used to tape down tubes from sticking, and when they flipped me over they could lose a breathing tube and I could die.

Arriving in theatre, the consent form was checked and there was some confusion. I’d signed for surgery on levels T9-T11 in my back. The surgeon wanted to go T6-T9. Maybe T6-T11. She came out and clarified. I wasn’t sure what was going on. “Do you know what level you’re going in at?”, I asked. “Of course!”, she replied in her flamboyant Italian style. “OK, let’s go. Do it.”

A CPAP mask was put over my mouth, magic was poured into my blood, and within a few minutes I safely slipped from consciousness.

Whilst I have no memory of it, I know at this point breathing tubes would have gone into me and been taped down to my freshly shaven face, pads would have been taped to my eyes, and I would have been rolled onto my stomach. I have some bruises that suggest this was a less than graceful process. An incision was made, and the surgeon removed the infection — “a clear puss”, as she described it, later — from my back, and send it to microbiology for assessment. Fourteen clips and a drain were inserted into my back, and I was catheterised.

Waking up in intensive care is not something I recommend. You’re there for a reason, and for the first few minutes there is a relatively large team around you. It had been 4 hours since I had gone under.

My legs and feet did not feel any different. Damn. There was a small chance that relieved of the compression the spine would recover straight away. However, at least they did not feel worse.

Through an oxygen mask whilst groggy my father spoke to me via a phone placed near my ear, from California. A few minutes later, my sister. Apparently I was quite rude to both of them. Mind you, I didn’t know what was going on, the canulars in my hand had tissued and they were trying to canulate my left foot, and I was groggy. Good job my family love me and understand.

Becca arrived, and relief started to settle in that the worst was potentially over. I was sitting up and chatting quite animatedly within a few minutes. The nurse assigned to me couldn’t even get all her paperwork done as I continued to wax lyrical about anything and everything.

That night every time I tried to sleep, in the moments I slipped into sleep my blood oxygen saturation level would drop below 85%, setting off alarms. This would either wake me, or cause a nurse to wake me. I set off the alarm perhaps 40 or 50 times that night. Until the anaesthesia cleared out of my system, it was basically too dangerous for me to try and sleep.

By midday the following day I was moved back to a neurosurgery ward, where I was surrounded by people who in some ways had it much worse than me: one young man had a compression in his neck which was putting him at risk of becoming a quadraplegic within days.

The Easter weekend in hospital is a dismal affair. With no regular staff around for four days, it was hard to get a sense of what was going on. I had a few meetings with physios who identified some issues preventing my legs were still not working properly, chief amongst them an issue with proprioception — the ability for my legs to know where to move without me consciously thinking about it. I managed at one point to walk a few feet with a walking frame, but with extreme hyperextension, and great difficulty.

The surgeon who operated was around and doing rounds in the days that followed. She was confident that she had removed all of the abscess, and whilst they didn’t know what it was yet, it had been sent to a lab to be grown into a culture and identified. Regardless, she was confident that it had all been removed, however with a course of antibiotics and some physiotherapy, there was no reason I would not be able to make a full recovery.

As we rolled into the following week one physio made it clear though: I was going to need a relatively long inpatient rehabilitation, which might not be successful. They remained confident that I would see improvement, but it was not going to be quick or automatic.

This conflict between the surgeon and the physio is frustrating, but honest: surgeons are looking at a root cause they have removed, physios are looking at the fact that the compression of my spine may have caused neuropathy (nerve damage), that might not be reversible based on the evidence of watching me try and move.

Again, I mentioned private health insurance. It would not get me better quicker, I was assured. I’d be in a fancy ward, with silver cutlery and my own room with TV would be guaranteed, but being on a dedicated rehabilitation unit might be better for me, and there was a chance I’d get the private room and TV anyway (as in fact I have done, so far). OK, NHS route it is.

Nobody yet can tell me how the infection got there. All I know is that it was a type of streptococcus B, nobody is sure how it got there, but that it did, and now it’s gone, and recovery is not instant and requires work.

At this point it was clear there were three things that were causing problems still in my body: my spine had been compressed and possibly had become inflamed/swollen and not working brilliantly and needed time to recover; my body had an infection; and, there may have been some long term neuropathy (i.e. nerve damage).

Nobody was sure how much of each was contributing to my current situation, and in all honesty nobody will be able to for some time. If it’s all spine inflammation and a little bit of needing antibiotics, there is a good chance I’ll make a full recovery, and soon. If however there has been permanent nerve damage, I’ll never make a complete recovery.

Thankfully the situation did not worsen though, and indeed since surgery I’d noticed small day-by-day incremental improvements. This is encouraging.

In light of all of this, I was moved to a dedicated neurology rehabilitation unit. This is a unit dedicated to helping people get ready for discharge after experiencing neurological problems. Many of the people in here have had strokes, have broken spines, are recovering from neurosurgery, and so on. I am unusual in that I might just walk out of here soon without the need of follow-up care (although that is unlikely).

I have a timetable for my weekdays in here. It includes physiotherapy, of course. Sessions on how to wash and dress myself with limited mobility, or how to make a meal and a cup of coffee are on there, although I’ve been warned I might find them of limited value. There is a session with a psychologist, too. We are expected to dress in normal clothes and encouraged to be independent where possible.

I’ve been here 4 days. I’ll be here for at least — a minimum — of 9–10 days more. The maximum amount of time I could be here is 12 weeks, but they would be surprised if I needed that much time before I could go home.

Discharge comes down to me being safe at home. That does not mean a full recovery, but rather if I’m in a wheelchair, I can use my home in a wheelchair. If I’m on a walking frame, I can use my home with a walking frame, and so on.

This is complicated by the fact that our landlords have decided — after us being resident in the flat for nearly 5 years — to sell the property and we are effectively on 2 months notice of needing to move. That means being discharged to that property is going to be hard. Any other property we consider, needs mobility to be factored in. Hammersmith & Fulham is extortionate these days (we were effectively rent frozen for 5 years), and so moving out of the borough is likely going to be needed, but then this unit can’t handle my discharge. It’s all poor timing.

And then there is work. I am fortunate that as a software developer I don’t need my legs, but my energy levels are still low, and physio is exhausting. I want to get back ASAP, but that might not be possible.

For now, my focus is on rebuilding my mobility.

As I was preparing to leave the general ward to come onto this unit, the patient in the next bed who had suffered a stroke a couple of years ago remembered his own time on this unit back then, and offered some words of encouragement as I packed my bags.

He told me it was a hard unit to get onto, that it was extremely good at getting positive results, and I should be grateful to be on it (which I am). He assured me that this was one of the best places in the city — and therefore the country — to be in, for where I am right now.

His final words as I pushed my wheelchair back to leave are now my motto and will remain so long after this is over: “Be brave. Work hard.”