Many of my clients know I’ve been through a difficult time over the last few months, I thought it was time to share my story, for others out there that are going the same or a similar experience; its a long read so make yourself a cuppa!
I’ve been a runner for a lot of years and also like to swim a couple of times a week and cycle (indoors and out). During 2017 my running fitness seemed to have dropped off though, with a number of things going wrong. I’d sprained my ankle in March and then fell over in 10-mile race in April- flat on my face and had to have my head wound glued. It was an unusually hot April day and a lot of runners were suffering in the heat, I was tired at eight and half miles so just put it down to lazy feet. After, I felt a bit unsure of my footing when running trail but just put it down to mentally getting over the fall. I also noticed I was getting slower in my parkruns, nothing significant and I just put it down to age (I was 56 at the time). In June I took part in a team relay event running from London to Cardiff and all seemed OK, even though I only had 20 minutes sleep in 24 hours, so I wasn’t overly bothered at this stage. Then in July, I got a niggly ‘injury’ which persisted and meant several weeks off running and I struggled to get back. But I did a lot of swimming, completing a 22-mile pool swim challenge over 5 weeks, and I started going to the gym to work out a couple of times a week. Towards the end of the year I’d done a few races, including some cross country and a 5-mile race which I enjoyed, and was only 3 minutes off my best. So, there was nothing significant and I thought things were picking up. I was certain that if I could just get back to some longer runs and get some more mileage under my belt I’d be back to my usual race fitness and distance in no time. I just needed to train harder!
So, at New Year I was looking forward to 2018. No reason not to, things could only get better…
There was the niggle with my left leg and foot. I’d noticed it becoming more of a problem over the Christmas break, it was very hard work to run and my leg didn’t seem to move properly, I was worried I would trip over the smallest stone (and did sometimes) and my leg just ‘wouldn’t behave itself’ as I commented. It felt odd. I visited my GP, physios, and a podiatrist. The GP ordered some blood tests for fatigue but they came back fine. I was told I by the podiatrist that I was ‘running tired’ and needed to rest (I was only doing 15 miles a week), and the physio said I had weak glutes – which seems a standard response for any running related injury,, and not something I agreed with this instance as I’d been doing glute work like crazy (I knew the relationship to ankle sprains and glute medius!). if they were weak, the question was why?
As we moved through January 2018 I tried to extend my runs but found that it was such hard work. I was having to stop and walk, every few miles – I couldn’t understand what was wrong at all. I was training harder but running slower. I was doing some training for a couple of races with my husband, Den, and he told me that my gait had changed. I was circumducting my left leg and slapping my foot down, it was also visible when walking faster and I could hear it too. It was awful!
Then I started to get a burning sensation in my right thigh, this quickly spread and affected all of my right leg down to my toes – It felt like nerve pain but I didn’t know why. I noticed that cold water felt painful when I first got in the shower and I couldn’t sense very hot water, so couldn’t easily get burnt. It was so odd.
I decided it was ridiculous to carry on trying to increase my mileage so I just concentrated on some speedwork and doing enough to get through the planned 10km and 5-mile race and perhaps pace Den round. Den had (as is his usual way) done hardly enough training, so I thought it would be fairly easy to pace him. The first race was a 10k and I was fine until just over halfway at a relatively easy pace, and then the foot slapping started. Den spent the next 2 miles encouraging me and with half a mile to, suggested we pick up the pace – and I couldn’t do it! We finished in a relatively OK time, but easily 10 minutes off my best. I was upset and didn’t really want to do the next race which was 5 miles, but I decided I would focus on mind over matter – until I found out that this just wasn’t going to work anymore.
In the midst of all of this going on with my legs and my running, I’d had a family bereavement at the end of December 2017 and the funeral on 24 January was also the anniversary of my mum’s death 39 years previously when I was 18. It brought it all back – my mum, my sister and dad. Grandad and now my aunt, whom I’d only recently got to know better– I felt sad and my usual ‘escape’ running just wasn’t bringing me any happiness.
The day of the 5 mile race came and as it turned out I could only manage 1 mile at a relatively OK pace – and from then on it all fell apart, I couldn’t coordinate my leg properly and cope with any slight camber or unevenness underfoot. I wanted to stop and cry. Den persuaded me to finish and got me round but I burst into tears at the end. I was over 7 minutes slower than the previous year (and 4 minutes slower than in December) which might not seem bad but I knew something was definitely wrong.
I had booked in to see a chiropractor who had been recommended but still had to wait until mid-February. I looked up my symptoms on the web – everything seemed to point to MS. As my sister had MS I knew that there was a genetic link and I had an increased chance of having it and so I was more worried.
When I saw the chiropractor, he was convinced the problem was in my back but didn’t want to do anything until I had an MRI. As I went on describing my symptoms he then said he thought I should see a neurologist. He advised me of a couple to see and I decided to go private to fast track an appointment but still waited 3 weeks.
In the interim I fell badly on a run and sprained my ankle which forced me to stop trying to run – I had fallen after crossing a rail track and had to ask for help (from some nearby workmen) to get back over the track as my left leg kept buckling under me.
It was March when I walked into the Neurologist’s office. I told him my symptoms and he followed up with tests of coordination, strength and sensitively of feeling. He then told me that there was something wrong with my thoracic spine which was affecting my nerve function from that point down (which by now I could tell was from the waist down). He said it was extremely unlikely it would be MS due to my reaction to tests and my age – I was too old for a first episode! I was to contact my GP that day for an NHS referral and he would arrange an urgent MRI. He said ‘let’s get this sorted and get you back running again’. I can remember feeling glad that someone had confirmed that there was something wrong and it wasn’t all in my head but I was worried about what this all meant. I had no pain in my back so how could anything be wrong there? I got a letter which confirmed my test results – and said my diagnosis was Brown-Sequard syndrome. I looked it up – it was exactly the symptoms I’d been experiencing. Loss of strength and coordination in one leg and lack of temperature sensation in the other. It was caused by spinal cord damage – so now I was definitely worried.
I had the MRI on 4 April – full cervical and thoracic spine. That was a huge ordeal for me – 40 minutes in the scanner trying to reason with my increasing claustrophobia or close my eyes, pretend I was somewhere else (pretty hard to do with all the noises, clunking, whirring going on) and try and focus on my breathing. I knew if I pressed the panic button I would just have to do it again. Afterwards the radiographer said I’d be contacted by the neurologist – it could be 3 weeks. However, the next afternoon I got a phone call from the neurologist to tell me the results; a phone call that would turn my life upside down!
I will never forget what he said and my reaction. He told me I had a prolapsed thoracic disc at T7/8 which had been there a long time. It was large, compressing the spinal cord and I needed an urgent operation. He had already spoken with the neuro surgeon who he was referring me to. ‘Its major surgery’ he said, the surgeon will have to go through the ribs and collapse a lung to get to it – ‘it’s complicated surgery’! He told me I would have to cancel our holiday to Bali (which was 2 weeks away) as my insurance wouldn’t cover me after this diagnosis. He said he was sorry to give me this news on the phone. Don’t run, don’t fall over -was his advice. I was told surgery should be within a few weeks. I put down the phone and cried!
I had to have a CT scan the following week and then wait to hear from the surgeon. The CT scan confirmed the disc prolapse was severe, calcified and had been there a long time, slowly impacting the spinal cord more.
However, things always seem to take longer than they say, and in actual fact is was 2 months before I had the surgery. Two months of worrying and progressively getting worse. I had a lot of sleepless nights. I was worried that I’d survive the surgery and if I did, what my life would be like after. I cried a lot when I thought at about it. I needed to do something but felt helpless. So I started to practice mindfulness every day and found it helped me to focus myself to make the most of every day and it also accept what was going on. I really had no choice but to have the surgery or risk progressive paralysis. I searched for information on thoracic spine surgery and I found out it was pretty rare and risky so surgery was usually avoided if possible. Outcomes from surgery were not always that successful. The best thing about my searching was it did lead me to a great blog by someone who’d been through similar 7 years before. It charted her journey from diagnosis to surgery, and beyond! I contacted Caroline who wrote the blog and explained my diagnosis and asked if she minded me asking some questions and being in contact and she replied straight away. It was absolutely great to have this support from someone who knew what I was going through. The fact that she’s survived 2 difficult ops in her case and was leading an active life was inspiring to me. I also knew that whatever happened I would need support and part of me writing this is to be able to help others who find themselves going through the same or similar scary diagnosis.
The appointment with the surgeon was 4 May and Den came with me. The surgeon had his diary ready to book me in for surgery as soon as possible; 6 June was the big day. He explained the operation had risks from deflating the lung (Pneumonia) and a 2% risk of paralysis from the waist down. There was a 30% chance that my symptoms would improve and the main aim of the surgery was to halt progression. It was pretty shocking and scary but I had no choice (see scan image). I had warmed to the surgeon straight away, he seemed genuinely concerned and apologetic at what I was going to have to go through. He said he had probably done more thoracic disc surgeries in the UK than anyone else, though it is still a pretty rare operation. I asked him how bad my disc was compared to others he’d operated on and he said ‘pretty bad’ – it was quite late stage, but he also said that bore no significance on the success of the operation. I was confident he would do the best he could and I had to trust him to save my legs.
Roll on 6 June, then!
Meanwhile, life went on and Den and I made the most of every day as best we could around work and my limited mobility. We got out for walks as much as we could, but gradually the walks got shorter as my leg got progressively weaker, until just before the op I found it hard to walk a mile. I also found the increasing numbness worrying and the burning in my right leg got worse (I found it hard to wear shorts as even the air seemed to increase the burning). There were other strange symptoms – I can remember often one foot would be red and the other white (something do with the nerve signals affecting circulation).
I did manage to get on my bike on the turbo most days though. OK my left leg wasn’t working properly, but my right leg seemed to make up for it. It got my heart rate up and gave me a lift; especially as I would put on my headphones, and sing (in between gasping for breath). Some favourite tracks that resonated at the time ranged from: ‘This is me’ by Keala Settle – ‘I am brave, I am bruised, I am who I’m meant to be, this is me!’ to ‘Fire in Me’ by John Newman – ‘Cause I’ve still got a fire in me, I never want to let it go’ So I’d sing and cycle in my conservatory which must have amused my poor neighbours – they never said a word or complained! It made me happy anyway!
In the last few days before, though it seems morbid now, I concentrated on getting my house in order – finances sorted, letting Den know where everything was and how to access accounts, cancelling subscriptions. Oh, and then lastly, I had to clean the oven and disinfect the kitchen floor – it seemed really important as I wasn’t sure when I could next do it!
Well, what can I say? Such a significant event – and I slept through it! I had to be in hospital for 7.00 am. I was told I would be the first down for surgery and that it would be all over by lunchtime. One minute I was worrying about going down to theatre, and that they were going to look after my specs so I could see afterwards, the next, I was coming round in the recovery room. I thought I was dreaming when I woke up in a white room! First thing I did was wiggle my toes – yes, I could move them! Perhaps I should try and move my legs a bit? Yes, I can do that too! Then I realised I was awake and it was real! The operation was over.
I was moved to surgical high dependency because I had a chest drain in to inflate the lung, and I had to stay there overnight. I had to cough (which was painful) and take deep breaths. Den (who had been waiting for me during the op) came to the ward and I was so, so happy to see him. ‘I can move my legs’ I said. He already knew as the surgeon had rung him straight after the surgery to tell him how it went.
The chest drains came out the next day, but I was on morphine on demand so pretty much on another planet. The surgeon said the operation went well and that my spinal cord was free, but there was a small tear in the dura (the spinal cord covering that keeps the spinal fluid in) which he had stitched but was causing me some headaches due to a spinal fluid leak. It meant I had to lay down flat when I had a headache until it settled.
On day 2 I was moved to a spinal ward – I had a lot of pain but the morphine pump I controlled helped – until the second day when they took it out! After this I had to wait for pain killers – the pain was very bad at times. The operation had been as good as I could have hoped for, and I was dealing with the headaches but the pain in my back and ribs was so immense that I broke down in tears a few times – nights were always the worse. Den was there every day for as long as he could stay. My daughters came to visit, I remember how lovely it was to see them – I was so sleepy though and the morphine made for some weird dreams.
I hated being in hospital, I was sick, constipated, it was noisy, regimented, and I had pain like I’d never known. I hardly got through the nights but my headaches did settle and over a few days the burning pain in my right leg lessened and the numb patches in my left leg reduced. They got me up walking very soon (I think I still had the morphine pump), though it was a bit of shuffle. Then I had to show I could walk up a flight of stairs, which was about 100m from the ward, to be signed off to go home. However, I had to wait for the headaches to settle, and then I got sick and had low salt levels and had to wait for that to improve. After 8 nights in hospital, I was allowed home – Yippee, I was so happy!! Den came to pick me up, after a long time in a discharge room I finally got out. It was amazing to be outside in the sunshine and fresh air after that amount of time – very hard to describe but it was like freedom! When I got home my daughter, Amy was there to stay for a few days. Around the time of my diagnosis we had found out that Amy was expecting a baby; our first grandchild, so it was lovely to see her when I got back.
The road to recovery is as long is as long as it takes…
The first weeks at home were marked by pain and sleepless nights. Some of my journal notes in the first days at home are all about waking up ‘still can’t sleep more than 1.5 hours at a time’, ‘can only sleep in one position’, ‘can’t wait for a proper shower and hair wash without worrying about the wound.’. I only had one chair I was comfortable in (a garden recliner with a pillow) and so that was moved around the house with me.
At three weeks post-surgery I was still on regular pain killers but finally off the codeine which I hated taking. It would be 6 weeks post-surgery before I could cut down on the medication.
Meanwhile I knew I needed to start somewhere to get my fitness back. From the day after I got home I was going out for 10-minute walks each day, which increased slowly and then I went out twice a day. After 4 weeks I got back on my stationery bike. I was weak and a bit unsteady but I managed 5 minutes very slowly – and I continued almost every day. By 6 weeks I was up to 2 miles of walking and 10 minutes on the bike. And I kept on slowly increasing it.
At 2 months when I saw the physio, I was doing 15 – 20 minutes on the bike and had managed a 3-mile walk. Just after this I started going swimming – only a few lengths and gently but it was great to get back in the water.
At my 3 month check up with the surgeon who did my op – it was good news. I asked him if he thought I could run again and if there was anything I shouldn’t do and he said he’d would be pleased if I ran again and there was nothing I needed to avoid – ‘life’s too short’ he said. As he had said before, the injury/condition I had was down to something that probably happened 10-20 years ago and it was just bad luck.
It’s now 3 and half months and I’ve been back to ‘office’ work 4 weeks on a phased return. I can manage 30 minutes on the bike (turbo) and have been on a couple of 4-mile walks. I am starting to walk faster on shorter walks. I’ve returned to the swimming pool, just once a week, and manage 15 minutes of swimming. My left leg is still weak and gets stiff (and if I squat I can hardly get back up again) but I hope it will get better with time; the burning pain and loss of temperature sensation in my right leg is nearly gone. I still get very fatigued and my legs ache often, especially at night.
I have numbness at the front of the ribs on the left side, which feels weird and there is soreness in the ribs and intercostals; the surgeon said this was from the operation and may not fully recover. Slowly, I am gaining confidence that I’ll be able to get back to doing activities I enjoy and even try some new things. If anything, I’ve realised that there’s no point putting things off and you have to live each day, as you never know what’s round the corner.
I’m sharing my experience because I hope it helps give some hope to anyone else who may be going through the same or similar diagnosis. Because its rare (though I’ve come across 4 people who’ve been/are going through similar surgery and diagnosis) I think it’s even more important to know there are others out there who understand.
During my journey to diagnosis I also learnt a lot about good practice from the health professionals I saw too. Let’s take the physio who said my glutes were weak, couldn’t answer why I had nerve pain in the other leg and said ‘let’s deal with one thing at a time’. It’s just not good enough to put everything down to weak glutes when it comes to runners. Yes, I understand with our sedentary lifestyles the glutes become inhibited – (note I said inhibited and not weak) but there are ways to check this and if so, some activation can work a treat to get the neural pathways back on a more efficient track. However, when an experienced runner who’s been knocking out some good race times tells you their form is rapidly and drastically diminishing and they can’t run properly, then the real skill is to keep listening and look for the underlying reason. Whatever else, certainly never ignore nerve pain. The podiatrist who said I was ‘running tired’, well yes, that was good observation – it’s certainly how I felt, but that’s all it was, an observation, the question was why? I wasn’t 24 miles in to a marathon when I stepped on the running machine, I was fresh and only ran for 8-10 minutes. Those professionals, didn’t join up the symptoms; they thought a bit of rest or some glute strengthening would see me right. As it turned out, I was using all my effort to pick up my left leg using whichever muscles I could send some messages to (which resulted in circumducting at my hip, foot drop and foot slapping – but still I was moving somehow!). Of all the people I sought out to get a diagnosis and treatment, it was the chiropractor, who listened to what I was saying, put it all together and then referred me on, whom I’m most grateful to.
It’s helped me realise that the greatest service you can do sometimes is JUST to listen and know when to refer a client on. I’m lucky someone did and thanks to them, and the incredible skill of the surgeon, though the road to recovery may be long, at least I’m on it!