It’s been a while hasn’t it?! I should start by wishing you all a Happy New Year – I hope 2020 will be a good one for you. Sorry it’s been quite a long time since I last updated. As you might have seen in my previous post, back in November I went into hospital for major surgery to my right leg – a Derotational Femoral Osteotomy. And to say things have been difficult would be an understatement! So I thought I would write a post updating you on the actual operation and how things have been since then.
I had to be up really early on Tuesday 12th November 2019, as my Dad and I needed to get the first train up to London to be at UCLH for 7am. Thankfully at that time in the morning we didn’t have to worry about the traffic, so made it there in plenty of time. In fact, we were too early in the end and had to wait outside the Surgical Reception waiting for it to open! Once I’d been checked in, I was seen by a Doctor, who went through the operation with me and marked my right leg with a big arrow (just to make sure they did the correct one!) I then saw the Anaesthetist to discuss the anaesthetic and pain relief. They would normally give someone having this operation a general anaesthetic and epidural, but because I’m allergic to morphine (and they use this in an epidural), he said they would do a nerve block (and GA) instead. Working out my pain relief options was also a bit tricky because I’m allergic to so many painkillers! But we decided I would have a Fentanyl PCA (Patient Controlled Analgesic – a button I could press so I could deliver my own pain relief) post surgery. After changing into a gown and saying goodbye to my Dad, I was taken down to a small waiting room near the operating theatres. You’re only meant to be kept there for a short while, but someone had got the timings muddled up, so I ended up down there for a few hours – thankfully there was a stream of other patients coming and going for me to talk to!
At about 1pm, I was taken down to be prepared for theatre. I was feeling pretty shivery, so they put this thing called a ‘Bear Hugger’ over me – it’s like an inflatable blanket that connects to what looks like a hairdryer, which blows warm air inside the blanket at a temperature they can control. It was so cosy – I think I need one at home! The anaesthetist gave me some sedation, although he had to give me a few doses before it had any effect. He was then able to do the nerve block, which meant lots of injections around the top of my right leg. Then came the general anaesthetic and next thing I knew, I was waking up in recovery around five hours later.
Initially, I didn’t feel too bad as I came round. The nerve block was still working, so I could feel very little pain. I was mainly just groggy and tired from the anaesthetic. Once my numbers were looking stable, I was taken up to the Orthopaedic ward. As night progressed to morning, my pain was getting more and more difficult to tolerate, despite the Fentanyl PCA. When the Doctors came round to see me in the morning, I was in tears from the pain, so they said they would get the pain specialists to come and talk to me. Unfortunately though, after seeing the Doctors, things went downhill pretty quickly.
I don’t have many clear memories from Wednesday or Thursday, so most of what I know is from what I’ve been told by medical staff and my family. After seeing the Doctors, I remember just not feeling right. I was shivering and shaking but didn’t really know why, as I definitely wasn’t cold. I was also feeling very ‘out of it’ and couldn’t really communicate with the Doctors and nurses. I think at first, they were concerned that I might be developing sepsis, and so started to follow the protocol for treating that. But then I started having seizures and was drifting in and out of consciousness throughout Wednesday and into Thursday. They did various blood tests and found that a lot of my electrolyte levels (things like potassium, calcium etc.) had plummeted very quickly, which can result in seizures. So I was attached to various drips to try and get them back into a normal range. However, this didn’t seem to make much difference and, on Wednesday night/Thursday morning, my parents were called to tell them the staff had had to do an emergency crash call because of how unwell I was.
I have vague memories of lots of voices and seeing different faces, but everything feels very disjointed. I could sometimes hear people trying to ask me questions, but I just couldn’t seem to speak or communicate in any way. I remember having an awful headache, pain in my chest, not being able to breathe properly and feeling really scared and confused about what was happening. After the crash call, the Intensive Care Outreach Team were called to come and look after me on the ward because I was too ill for the ward staff to manage. Thankfully with their expertise, they were able to keep me out of the Intensive Care Unit and gradually, the seizures stopped and I started improving. I was sent for a CT scan to check that nothing serious had caused the seizures and that the seizures hadn’t done any damage to my brain, but thankfully that all came back clear.
Once I was a bit more stable, a Neurologist came to see my Dad and me. He had read the detailed notes that staff had kept and, based on their observations and my test results, he told me he thought I had experienced Non-Epileptic Seizures due to a Functional Neurological Disorder. Basically, when your body is under stress, either mental or physical, your brain sort of shuts down as a way of coping. He said that because I was in so much pain from my surgery and was also really unwell from my electrolytes being all over the place, that my body simply couldn’t cope and shut down, which then caused the seizures. It’s something I’ve got to look into further with a referral to a Neuropsychiatrist and I’ve also had to inform the DVLA, who are likely to revoke my license again, which I’m gutted about (but obviously understand).
I was absolutely covered in bruises on my arms from all the needles I’d had stuck in me while I was so ill, and felt very drained, mentally and physically, as seizures really take it out of you. I was sent for an x-ray to make sure the bones in my leg were all in the right place, especially after having all those seizures, and luckily everything had held well.
Once the Intensive Care team had stabilised me, my Dad started to help me get some nutrition inside me, first by drinking some Ensure drinks and then by spoon-feeding me with things like yogurt and potato. I gradually started to feel a bit better (as much as you can after major surgery) and was able to start sitting up a bit and eating/drinking a bit more. When the Doctors were happy that I was more medically stable, the physiotherapists came round to see me. The first time they saw me, they started by getting me to move my feet. Then they helped me to slowly sit up, put my legs over the side of the bed and stand up while holding onto a walking frame. Just that ‘simple’ task of standing up for a few seconds completely wiped me out and I slept for quite a while afterwards.
I was a bit shocked to start with at how swollen my leg was. I remember when I looked at my leg for the first time; my right thigh was pretty much double the size of my left thigh! There was also quite a lot of bruising, which gradually spread and got worse as the days went on. What with all the bruises on my arms and my right leg looking like it did, I definitely looked like I’d been in some sort of fight (and probably lost!)
One of the best things about the ward I was on at UCLH (apart from the amazing staff and lovely patients that I got talking to!) was the incredible view from our windows. Whenever I’ve been in hospital before, I’ve either not had access to a window at all, or the view has been of something like a car park or another hospital building. But with being so high up (I was on floor ten) and being in the middle of London, we had amazing views of the London skyline. I moved bays halfway through my stay, so from my first bed I could see the London Eye, and from my second bed I had a fantastic view of the BT Tower, which looked really pretty lit up at night. We all joked that people would pay top money to have a view like that of London and we were getting it for free (let’s ignore the fact I was having to recover from very painful major surgery!)
Over the next few days, the physiotherapists kept coming back to see me and we gradually progressed from standing with the frame to walking a few steps, until I could get to the toilet and back. It took me a while to get my head around putting any weight on my bad leg, firstly because it was ridiculously painful (even with lots of pain relief) and secondly, because I was so aware of my leg being completely broken and held together with metalwork that I was scared it would just all come apart underneath me at the slightest bit of movement or weight bearing. The doctors and physiotherapists explained to me though, that weight bearing as pain allows actually helps with recovery of the bones and muscles. Easier said than done when you’re in agony, but I was managing to put a small amount of weight on my toes. After several days of practising walking with the frame, the physiotherapist then started moving me over to using ‘gutter’ crutches (crutches that you lay your whole forearm in – I have injured my wrist and so standard crutches would have made the injury worse). I found the crutches pretty difficult at first because I was so wobbly, but with practise, I was just about managing to get to and from the bathroom.
I spent a week in hospital at UCLH altogether – a bit longer than expected, but with being so unwell after the surgery it took us longer to get me stable and up on my feet. I was discharged at about 6pm on Tuesday 19th November and had to make the journey home from London, which was hard work to say the least! We got a taxi from the hospital, although trying to get into the cab wasn’t easy. They put the ramp down, but it was so steep that we found it a real struggle to get my wheelchair in. We then had to get a train from Waterloo, although with it being quite late it meant the train was fairly quiet thankfully. It felt so good to get home and lay down on the sofa!
Since being home from hospital, things have been difficult. I spent the first few weeks crying a lot of the time. The pain was intense and I find anaesthetics really affect my mental health. I think it was also dawning on me quite how big this operation was and just how difficult the recovery was going to be. I had to give myself blood thinning injections in my stomach once a day to reduce the likelihood of blood clots, which took a while to get my head around, as I’ve never had to inject myself before! It also took a few weeks to chase up physiotherapy, as some paperwork went missing, so I felt a bit lost as well. I had reduced my painkillers massively (thinking it was the right thing), but after ringing the specialist Orthopaedic nurse and being told it was normal to still need a lot of pain relief, I started taking them again, which helped a bit.
But most of my time has been spent laid out on the sofa sleeping and trying to concentrate on things on the TV. However, within the first week of being home, we noticed I was beginning to develop pressure sores on the backs of my heels. I have pretty fragile skin because of my Ehlers-Danlos Syndrome and have had the start of a pressure sore before, so knew I needed to get on top of them before they got any worse. Luckily my GP surgery were brilliant – as soon as I contacted them, I was seen by a nurse who gave me some dressings to wear while I waited for something more permanent. A Community Nurse then came out to visit me and immediately ordered a selection of pressure cushions for me to sit/lay on. I’ve been using them ever since and my heels have healed up nicely, although I am now starting to have problems with the tips of my toes so might need to get some more advice.
Starting physiotherapy in the community has been hard, although I’m lucky to have a brilliant physio who pushes me a bit, but not too much. To begin with, we were struggling to get my muscles to do much at all, so it’s been a very slow process of doing little exercises at home, along with manual manipulation from the physio regularly. I still can’t move my leg very much but my physio thinks the muscles are getting stronger and it’s a bit easier for her to do some movements with my leg. She’s been a bit concerned that things aren’t moving much, so I now have two appointments a week and I’ve been referred for hydrotherapy. I saw my surgeon recently for an eight-week check-up. He said the bone seems to have started growing but it can take at least nine months for it to fuse back together completely. I’m having a lot of trouble bending my knee and my foot now sticks out to the side, which is causing pain. At some point I may need an operation to my lower leg to straighten things out, but the surgeon said they wouldn’t touch my leg for at least nine months. So for now, it’s just a case of working slowly on my physiotherapy to try and strengthen my muscles and improve the movement.
I had planned to do more regular updates about this operation, every few weeks to detail how the recovery was going. But I think I underestimated just how much the whole thing would knock me for six! So apologies that this is one big update instead, but I hope you’ve found it interesting (or even helpful, if you’re going through something similar) to hear about. Do let me know if you would be interested in future updates as my recovery progresses, and also when I possibly have the lower leg and other leg operated on as well. And you can always watch my Weekly Vlogs on my YouTube channel to keep up with more regular news about my recovery and life in general.
Have you had a Femoral Osteotomy? Or do you have any questions you would like to ask about my experiences of it?
