Tag Archives: pain

What’s Next for the Knees? Nothing (for now).

17 Mar

Following on from my previous post, where I’d written about having had an appointment with my GP about my painful knee – here’s my update…

I had an x-ray done at the local hospital, and the radiographer’s report was that the only abnormality in my knee was that I have osteoporosis (bone thinning).

Feeling unsure of this, as that diagnosis wouldn’t explain the pain I’ve been experiencing, I have also been for a consultation with the surgeon who replaced my hips (as I trust him completely). He too has said that my knee isn’t arthritic to the point of needing replacement yet (hooray!), and that the osteoporosis the radiographer had said was there is actually just localised due to previous surgeries I’ve had. Other operations affected how my bones grew and thus have left them less dense than would be expected in someone of my age. So, that’s all good news. However! Neither of those observations explain the pain in my knee. The consultant has said that he thinks the problem behind the pain is that my patellas (knee caps) are lower than they should be…

Right knee

This, combined with my legs not being straight means that they’re being pulled to one side and this is causing the pain. There isn’t anything that can safely (and with confidence) be done about this, so in essence, I must deal with it and live with the pain. Not ideal. There are positives, as it means I don’t need to take time away from my PhD studies for surgery, and that joint replacement isn’t required as I had feared it may be – but the thought of the daily pain isn’t great.

So, no major news… but this is the update about what is next for the knee, and the answer is, for now, nothing. It’ll just continue to painfully grind inside and pop and click.

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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!

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Dwarfism Awareness: 2016

13 Oct

It’s October, which means that it is Dwarfism Awareness Month again. It’s the month where I like to try and summarise quite quickly some information about Pseudoachondroplasia – the form of dwarfism that I have.

Last year, I summarised physically how the genetic condition has formed me physically – from misshapen joints, to short stature, and an extra-curvy spine: https://lifewithpseudoachondroplasia.wordpress.com/2015/10/09/pseudoachondroplasia-the-low-down-dwarfism-awareness/

The year before that, I demonstrated in photos a few situations where having this condition can make navigating various aspects of life and environments a little extra challenging, and touched on how the disability can make an impact on a person emotionally: https://lifewithpseudoachondroplasia.wordpress.com/2014/10/31/little-things-about-little-me-dwarfism-awareness-month/

This year, I thought I’d try to summarise how living with a form of dwarfism is a life-long thing, which simply isn’t ‘just being a bit short’, as many people seem to think!

Whilst what I’m showing is simply my own experience of how dealing with the condition has interfered with my life, it does begin to show how people with pseudoachondroplasia have to build in time for medical interventions in their lives… and it’s worth noting that there are a whole load of other surgeries that pseudoachondroplasia can cause need for, including some pretty nasty spinal surgeries.

Pseudolifechart.jpg

From the age of 3, when I was diagnosed, I have had many, many hospital/doctor/surgical appointments, with daily injections beginning at 5 years old, and my first major surgery when I was 7. Most recently, I have had two total hip replacements, and there have been various operations between. Next on the list will be a knee replacement, as my right knee is becoming more painful as time goes on (the cartilage is wearing down to nothing).

… And in the future? More hip replacements. Knee replacements. Probably shoulder surgery, with possible replacement. Constant worsening pain as osteoarthritis spoils my joints.

My attitude is just to get on with it; Pseudoachondroplasia is a part of my life and it’s something that I need to juggle with everything else, but I want this post to highlight – for anyone hoping to learn more about dwarfism during this awareness month – that living with a form of dwarfism is not always just ‘being a bit shorter than average’. Dwarfism is needing to adjust life to living with a body far from the average, it is enduring constant pain, it is spending time in hospital, being operated on, and for some, it can also be dealing with prejudice and bullying.

For those who would like to know more about the details of the surgeries I’ve mentioned, how pseudoachondroplasia has played a part in my life, or more about the condition itself… there are plenty of other blog posts for that 🙂 If there are still questions unanswered, I’m always happy to have readers make contact ( rubysallen@hotmail.com or facebook.com/rubysoniaallen ). I’ll try my best to answer anything that may help spread awareness and understanding 🙂

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Hip Replacement Surgery- Final Update.

15 Apr

This morning I went for my final (well, for the short term) follow up appointment with the surgeon who replaced my hips. Having inspected how I was walking and how I can control the new joints, no x-ray was needed, but he says I can now go crutch-free! Hooray! This is the first time in well over a decade that a ‘no crutches’ life has been an option for me, I’m thrilled.

Obviously with my ‘push the limits’ attitude, I had to ask what I can do safely with these new hips… He suggested swimming, I suggested jet skiing, he suggested riding a bike, I suggested riding a horse – or a camel! After some discussion about what the hip implants I’ve now got can actually take, we settled on how I will try things I want to try, but be sensible about it- no trampolining for me then! This is all so exciting though, it means I can finally try a few things I’ve always wanted to but in the past have been unable to due to the pain. I cannot wait to try some new things with my shiny new hips! 🙂 Starting tomorrow. I may well be joining a gym! Wooooo!

It’s a pretty positive outcome for what was a nasty situation just a year ago. I was in excruciating pain on a daily basis, now I am pain free! The decision to have these joints replaced now (even though I’m aware they’ll need doing again in the future because I am so young at the moment) was the best decision of my life.

I’m happy. 🙂

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A Little Achievement.

23 Feb

Walking, even with crutches, for any length of time has always caused great pain in my hips, so I’ve always avoided it unless necessary. I’ve always longed to be able to take my dog for a walk, yet never been able to do so because of the pain. However! Today, I decided that with both of my new hips feeling very sturdy and ‘ready for action’, I would give it a go. I’m still using crutches (post-surgery rules) but I managed to take my dog for an hour and a half walk. And without any pain!! Now to a person of average mobility, that would seem like nothing, but to me, it’s made my day! Hopefully this is a sign of things to come and I will soon be walking here, there and everywhere on these new hips!

Just thought I’d share my little bit of happy news!

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