Monday, 11 November 2019

Life Update - An Operation - Derotational Femoral Osteotomy

I want to start today’s blog post with two apologies. Firstly, to apologise for the lack of content in recent months – it’s safe to say I’ve been slacking a bit (OK, so actually my health has been rubbish and so I haven’t been able to write so much). But that’s in the past and there’s not much I can do to change that. And secondly, I need to apologise for the fact there probably won’t be much content going up for the next few weeks at least. Not the greatest place to start a blog post! But I wanted to use this post to give you a bit of a life update and let you know why I won’t be around much over the next few weeks, so at least you know I haven’t completely forgotten my blog!

In short, I’m going into hospital to have quite a big operation – a derotational femoral osteotomy (I’ll explain more in a minute!) It was meant to be happening on Thursday 7th November, but I had a phone call last week to say it had been postponed. So it is now (hopefully!) happening on Tuesday 12th November instead. As well as wanting to update you in this post, I also thought it would be useful for others, and myself, to document my journey through the operation and recovery. When I found out I would be having this surgery, I started searching online for information about the procedure. But I found it really difficult to find anything relatable. I did manage to find a couple of people on Instagram, who I have found talking to invaluable. But apart from that, all I found was a lot of medical information, mainly relating to children having the procedure, but nothing written first-hand by adults who have gone through it.

I guess I should probably start by explaining what the operation actually is! In layman’s terms, the surgeon will be making an incision into my right thigh, breaking my femur (thigh bone), rotating it to the correct position and holding it in place with a metal rod. I asked on Instagram if anyone had any questions they would like answering when I made a video and wrote a blog post about this, and one of the main questions people had was ‘why are you having this operation?’ 

It all started a few years ago, when I went to my GP because I was getting a lot of pain in my hips. I have always had problematic hips – when I was born, I had congenital hip dysplasia, which meant my hips dislocated very easily and I had to be fitted with a Pavlik Harness to allow the hip sockets to grow properly around the ball of the hip joints. Thankfully, this corrected the hip dysplasia, but I have still experienced instability, subluxations and constant pain in both my hips. A lot of this was eventually put down to me having Ehlers-Danlos Syndrome (EDS), but as the pain got worse, my GP decided to refer me to my local hospital to see an Orthopaedic Hip Surgeon. After seeing him and having some general x-rays taken, he could find no obvious problem with the hip joints and so the increasing pain was just put down to my EDS. 

But my GP had also made a referral for me to be seen by an Orthopaedic Hip Specialist at University College London Hospital (UCLH) at the same time. This obviously took longer to come through, and when I received the appointment I did contemplate cancelling it, as the local consultant had already told me that there was nothing wrong. But I decided to go ahead with the appointment ‘just in case’ and so, a couple of years ago, I went up to London to see the specialist. After a thorough examination, he sent me to have some more x-rays and a CT scan of the whole of my upper legs. When I went back to see him again, he told me that both of my thighbones were rotated too far inwards, at quite a high angle. This means that the hip joints aren’t sitting properly and so, are moving around in an unusual way, which could be causing some of the pain. It also means that the rest of my leg is wonky too – my knees face inwards, rather than pointing straight out, and when I walk, my feet tend to turn in and I walk on the outer part of them to try and compensate. All in all, nothing really lines up!

To begin with, we decided not to do anything drastic, so I was sent away for six months to see how my symptoms progressed. Unfortunately though, the pain and instability just seem to be getting worse, so we eventually decided that surgery would be the best option to try and rotate the femur back into the correct position. They can only do one leg at a time (because otherwise I wouldn’t be able to walk at all!) and the recovery period is pretty long, so it’s not going to be a quick fix. One issue is, we’re not sure how much of the pain is caused by the deformity in my femurs and how much pain comes from my EDS. So it could be that, we could do this operation and my pain and instability don’t get a whole lot better. On the other hand, it could give me some significant improvement in the long run.

There are risks, as with any operation, although having EDS does make things a bit more complicated as my bones and joints are more likely to move around. I’m likely to be in hospital for at least three days, possibly longer – it depends on when we can get my pain under control, how I recover from the general anaesthetic and what my mobility is like. I will be on crutches for quite a while, as I won’t be able to put my full weight on my leg while the bones fuse back together again. As my mobility is already pretty limited, it’s likely I will have to use my wheelchair a lot more, as I think I’m going to struggle on crutches. We have also had a stair lift installed, which is going to be beyond helpful for getting me up and down stairs when I get home. 

As I mentioned already, the recovery time is pretty long. I’ve read that it can take your femur up to six months to completely heal, and obviously there will be lots of physiotherapy needed to try and get my muscles and joints working properly again after surgery. I won’t be able to drive for at least a month to six weeks, and after then, it will just depend how I’m feeling and whether I could perform an emergency stop. So there’s going to be a lot of hobbling around (well, more-so than usual!) and I think I’m just going to have to take things a day at a time, certainly for the first few weeks.

I think this is the most nervous I’ve felt about any operation or procedure I’ve had, but then this is probably the biggest surgery I’ve had to date. I’m quite anxious about the operation itself and whether everything will go to plan. But I’m also not looking forward to being up in London away from my family while I’m in hospital. Usually, when I’m in my local hospital, my family are able to visit most days. But that isn’t going to be possible while I’m in London, so I need to make sure I take lots of things to keep me occupied while I’m recovering. 

I’m probably most anxious though, about the recovery period once I’m home. It feels strange to me, putting myself through something that I know will make me a lot worse to begin with. Any independence I currently have is going to be gone, and I’m going to be essentially starting from scratch again. I’m going to have to re-learn how to walk and will have to learn to ask for and accept help from the people around me a lot more than I currently do. I am a bit worried about how my mental health will fare, as I know it’s going to be a tough few months getting used to a new normal. But I hope that, once I’m feeling a bit better from the initial operation, I will be able to get out and about a bit with the help of my family, and go and see some of the Christmassy things nearby. 

As both of my femurs are wonky, once I’ve completely healed from this operation, we will have to look at me having the same operation but on my left leg. And my surgeon has also said that this operation can make my lower leg look/feel quite wonky, so it may be that I will need an osteotomy on both lower legs at some point as well. But I’m trying not to even think about those things at the moment and just concentrate on getting through this surgery first!

I think that pretty much describes everything that’s going to happen and I hope it explains why I may not update my blog for a little while. But if you do have any other questions that I haven’t answered, please do feel free to ask, either in the comments or on my social media. As I said earlier, I do hope to try and document this process as much as I possibly can, so I will try and take photos and videos while I’m in hospital so that I can keep you up-to-date with my progress both on here and on my YouTube channel. And if you want to keep up with how things are going on a more day-to-day basis, please follow me on Instagram and Twitter, as I hope to keep them both updated while I’m in hospital. I will also need to be kept distracted while I’m recovering, so I would really appreciate any messages you fancy sending my way!

I’m hoping that, once I’m on the mend, I can start updating my blog more regularly, as I have lots of ideas for posts I want to share! So please don’t forget me while I’m away – hopefully I’ll be back posting again very soon!

Have you had a femoral osteotomy? Or do you have any questions you would like to ask about my experiences of it?