Tag Archives: Knee surgery

What’s next for the knees?

18 Feb

Since my hips were replaced, I haven’t written much for this blog beyond awareness posts. Primarily because those wonderful new joints have allowed me to live with reduced pain, so I’ve been getting on with life. However…

Over the last year or so, my knee joints – especially the right one – have been getting increasingly more painful. I’ve tried ignoring it. I’ve tried being kinder to it (less moving about). I’ve tried painkillers (paracetamol, ibuprofen…). None of this has worked, and I can’t even use crutches for a while either now my shoulders have decided to join the painful joint club! So, last week, I decided to go and see a GP about this nuisance joint. I’ve owned up that I’m not coping particularly well with the pain (unlike me to be honest about that..) and that I think it needs some attention from a medical pro!

My condition hasn’t been followed up at all since the last NHS surgery was done 6 years ago – and even then, the check ups were just in relation to the frame that had been fitted to my leg. Whether my body needs medical attention has – until now – been left to me to determine. This hasn’t impressed my new GP, who feels that the joints should have been monitored to prevent the pain getting as bad as it has (to the point where I’ve opted to work from home when I can, so I can wrap the knee up in heated blankets or with heat pads to relieve the pain). So, the new GP has given me a prescription for a stronger painkiller for the short-term, but has also sent me to have an x-ray of the knee joint. I have an appointment next week to discuss the x-ray and the next move (which I’m afraid may well be joint replacement – which will be quite something to juggle with my current life plans). The GP has said before this appointment, he will read through my medical notes so he can give the best advice and referrals… this is partially great news, as it means maybe something can be done to reduce the pain, but also something I’m dreading – as once again, this condition has the potential to throw a spanner in the works of my life!

There isn’t a conclusive point to this post… I just thought I’d write it now, so those who read this blog to see what they/their children may face when living with pseudoachondroplasia can follow through what happened and when – as I think this is the beginning of the next joint problem journey!



My Nuisance of a Knee…. and Hello New Hip?!

16 Jul

Last Wednesday, I headed down to London again to find out what could be done to my knee.  Since the last taylor spatial frame was removed, I have been unable to bend my knee past 90 degrees.  I was told to wait three months, to see if the joint loosened up (as the bones were locking up against each other in the joint)…. and that I did. I tried to move it as much as possible to try and get some more movement in it.  However, when I spoke to my surgeon last week, he told me that there was only one possible option.  I can’t remember exactly the terminology and phrasing was that he used, but it sounded to me that he could cut the muscle around my knee to see if that would help. But, he ‘wouldn’t recommend it’, especially as it wouldn’t necessarily do any good, and could potentially cause further complications.  So, that’s that – my knee will never again bend as much as it used to.  Not a massive problem, but it’s a bit irritating, as it was fine before the last op…. an op which didn’t even involve my knee! Bizarre!!

So I was discharged from the hospital (Quite sad to say goodbye to my surgeon actually!)…. but, not before he had referred me to a hip replacement surgeon (so I won’t be free from the hospital forever!).

I have known for a while that I will be needing hip replacements at some point in my life, and recently it has become evident that one will be needed in the near future (as opposed to when I am 30 which is what I was expecting).  As soon as I was told a few months ago that I needed a replacement joint ‘pretty soon’, the research began.  I have looked up how hip replacements are done, what options there are as far as how the joints are made, which surgeons may be best to go to, what the recovery time is, what limitations there are after surgery, what to expect in terms of pain, what the risks are…. you get the idea, I did a lot of reading.  I was considering getting the opinions of both a surgeon on the NHS who operates at the hospital I have previously been treated in and a private surgeon who has performed hip replacements on young adults… until I was told last week that Mr Nejad (the NHS surgeon) has replaced many hips of those with Pseudoachondroplasia before. Well, that was that decision made then – he will know what he’s dealing with and what is best to do with my situation… that’s reassuring. So, I have been referred to him and will have an appointment with him in the next few months… then, I will know more about what needs to be done, and when.  It will be good to know more about it, and possibly get myself booked in if a  replacement is needed ASAP as I’ve heard the replacements can give patients a totally different way of life – hey! Maybe I’ll be able to walk about without crutches?! That’d be good. 🙂



What’s to come…

9 May

So the plaster cast was taken off my right leg in December – to reveal my perfectly straight leg, excellent! A follow up appointment was booked for three months later, in March of this year.  The question I knew I was going to get from my surgeon was (as I entered his office) ‘Ruby, why are you still using crutches?’.  I had wanted to be off crutches within a few weeks of plaster removal, to build up muscle and strength, but this hadn’t happened. I was unable to bend my knee past 90 degrees, no matter how much force I put onto it – and this made walking without an aid difficult, and walking up stairs? Impossible (You need 115 degrees of bend to use stairs unaided. According to something I read online!).  There was another reason I hadn’t ditched the trusty crutches too – sharp pain in my hips – but I decided not to add that into the equation when I replied, ‘Oh, because I can’t bend my knee enough to walk with ease’.  With that, I was told to lie on the examination bed, whilst he tried to force my leg past the position I said it got stuck in… No Luck. Apparently it’s a ‘mechanical jam’. So off to the x-ray department I went, to see what this jam was.

A few x-rays later, and it was revealed that the reason I cannot bend my knee is because the two bones are locking up against one another. Since the frame went on, the knee joint has become misshapen. Obviously, I ask what can be done about it, and he says he’s not sure. NOT SURE?! Aaaah! But, he is referring me to see two knee specialists next month to see if they have any ideas… Oh, I really hope they do! Having a leg that won’t bend much obviously isn’t the end of the world, but it is an inconvenience!

Once that was cleared up, I decided to just drop into conversation that my hips had been hurting quite a lot too. Another look at the x-ray, and he said (and I quote) ‘Yep, you’re stuffed – to put it nicely’. haha! I do love how blunt he is about it! Comparing the x-rays from December, to the ones taken in March (just three months later), the bone of my hip has worn away quite considerably, which is why they are hurting so much. Apparently I will be needing hip replacements in the not-so-distant-future.  I’m not impressed.  I was aware that hip replacements are a common thing for people with Pseudoachondroplasia, but I thought I would have until I was at least 30 before they were needed! I’m 20! That’s 10 years too early!! I have plans for my life, in particular, to further my education at University doing a PhD or Masters, and to get my career kicked off – how am I supposed to just fit in the surgery and recovery time for a couple of hip replacements?! 😦 But, it’ll have to be done, somehow.

I have spoken to a couple of women who have PSACH since, one who has had hip replacements, and another who is due to have her first soon… and by the sounds of it, the operations will be worth it. The only major worry I have (asides from the timing issues!) is future replacements. One set is fine, a second should be okay, but to keep on replacing joints is a risky thing to do. I am yet to have an appointment with the surgeon who will be sorting my hips out for me (and it’ll have to be a fairly specialist one as people with this condition don’t actually have proper hip joints anyway…) but I have a million and one questions for him when I do! I’m not quite sure what I’ll be putting myself up for when it gets to joint replacement surgery, but I’ll cross that bridge when I come to it. For now, I would just to be able to bend my leg! 🙂


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