and so it continues…

September 26, 2008

Within a month of my first visit to Guys I had to return for more x-rays and a CT scan.

This time I had my dad with me, who decided that it was only a short walk from the underground to St Thomas’ (where I was having the CT scan).  30 minutes later we arrived a little fluster and yes, I was hobbling once more!

A CT scan sounds a bit scary, but it’s not – it’s just a bed in the middle of a big polo shaped scanner. I had to lie on the bed while it moved me back and forth through the scanner to check out my hips and knees this time. The fella that did my scans was really lovely and let me have a look at them, not that I could tell much other than I have shallow hip sockets!

Later that day my dad and I returned to Guys hospital for me to have more x-rays. Again it was on with the sexy blue robe – my dad was so sympathetic he decided to take a picture of me dressed in it. No, that picture will not appear on this blog!

The x-rays I had were a dysplasia series; around 6 X-rays with my legs in all sorts of different positions. I had to stand like a penguin, lie pigeon toe-d, put one leg up on a bolster … any way if you ever have to have this series done WEAR SHORTS! Fortunately I was prepared :o)

The second visit to the consultant – a Mr Jacks this time, with my dad in the room could have left me emotionally scarred for life. No, there was still no buttock flashing, but a lot of well meant insults! Fortunately I know my dad loves me and it’s just his way, however by the time I left the consultation (still hobbling) I had been teased that; My driving is scary and the longer I’m unable to drive the better, I have the hips of a boy (they are very narrow but after 30 years of having ‘boy’s hips’ the last thing you need is a medical professional reminding you!), if the pain gets bad and I pop ibuprofen too often I could end up with a stomach ulcer, and finally that I need to be careful cos the op works best on slim people! Now I’m not too porky, but I’m no rake either, so what was the fella trying to say? ‘lay of the pies luv’ would have given me a better idea!! Mind you I might have slapped him, and considering he could be holding a scalpel while I’m out for the count that probably wouldn’t have been a good idea!

The most scary part of this consultation was the time scales I was given for both hips to be operated on. Previously I had been told that there would be a 6 month gap between the two, so both would be sorted within a year. Considering I had just managed to secure a place at university this wasn’t the best news, but deferring for one year isn’t the end of the world, so this is what I had done.   At the second appointment I was told that realistically it would be 12 months between surgeries.  What the heck was I going to do about Uni now?!   I’m fairly impatient and when I make a decision about what to do with my life I just want to get on with it. The thought of postponing my course for what would be 3 years (due to timing of the surgeries – smack bang in the middle of the academic year) made me want to cry…..a lot.  Fortunately the staff at the university have been amazing.  I made an appointment to see the course leaders and explained my situation, so now I’m on my course (in fact I’m typing this at Uni) and will complete two thirds of it before my first surgery, then the last third will be finished in the next academic year – HURRAH! In the meantime, however, I have to be careful with my dodgy joints.

As little as 6 months ago I was able to go circuit training and do 90 degree proper squats whilst holding a weighted 4kg (medicine) ball, now I can just about manage a 45 degree squat with a 2/3kg ball.  Hill walking is a real pain in the hip after a fairly short time, and I’ve been told not to run at all. Sitting cross legged makes me cease up, sitting on a hard surface (plastic/wooden chairs) makes my hip sore for a while, standing for any length of time makes me stiffen up and need to ‘clunck’ my hip to stop it from sticking. Basically although I’m far better off than many people with dysplasia I can tell that there is some deteriation and I’m not happy about it! (well who would be!)


what happened next?…….

September 25, 2008

After the initial shock of my diagnosis I did the inevitable research about PAO, found a fair bit of info about the medical procedure and a few graphic photo’s and pictures of the tools needed to perform surgery. Sometimes you really can know too much!

The closest PAO surgeon to me is based in London (apparently there’s only four surgeons who perform this surgery in the UK!).  Eventually after 7 months of waiting I had my first consultation at Guys Hospital with a consultant named Mr George.  My mum came with me for moral support  and we headed to the ‘big smoke’ for a spot of shopping, this aggravated my hip and resulting in hobbling – but at least I didn’t feel like a feel like a fraud when I limped into the hospital.  (I hate sauntering into the doctor’s or hospital without even a sniffle, I’m sure people are looking at me and thinking ‘what the heck is she doing here, flaunting her ability to breath/walk/not cough!’)

Anyway I was sent off to x-ray and had to don a very lovely blue robe, thankfully only trouser removal was required – there was to be no buttock flashing!  Once I had returned with x-ray in hand mum and I went to see Mr George and a very lovely sister named Michelle. Mr George’s first questions (after pleasantaries) were “what are you living arrangements?, what sort of house do you live in?” my response of “it’s a semi, 2 floors and the bathroom is upstairs” led him to realise that I knew where this conversation was headed. That and the list of questions about PAO I’d prepared for the appointment!  It was confirmed that I do need to have PAO and after going through some of the joys of having my pelvis sawn and screwed back together it was mentioned that I may also need a Femoral osteotomy. This involves taking a wedge shape from the femur on the inside of the leg so that the femoral head is a less of an angle – this helps to cover the head of the femur with the acetabulum. Just looking at my x-ray the femur looks to be almost 180 degrees, but I’ve not had any measurements done yet – so this could be an exaggeration on the consultant’s part.

I now had confirmation that I would definitely need surgery, and although I figured that would be the case it still took a while to really sink in. About 5 days after visiting Guys it finally hit me. Friends emailed about a fab group holiday abroad – scheduled for the same time as my first op. Tears of frustration, realisation of the impact it would have on my life and tears of terror hit me all at once. The tears, snot and weird face pulling (why does that happen when you cry – as if you don’t look bad enough with a blotchy face and swollen eyes!) went on for an hour or so but it’s all ok for now!


Hello world! So what’s this all about?

September 18, 2008

It’s all about me frankly! well my dodgy hips to be perfectly honest. I’m blogging for both selfish and alturistic reasons. The former to help me get things straight in my head – I’m one of those annoying people that thinks out loud and has to write things down to get them ‘out there’ so blogging seems like a way to do that. The latter is linked to my ‘thinking out loud’ in one respect – to save my lovely boyfriend, family and friends from boredom of me banging on about random things linked with Dysplasia. Such wonderful subjects have so far included; how long after surgery until I can go kickboxing?, do I have any cartiliage left?, will I be able to shower within the first few weeks after surgery?, and most importantly how long will it be until I’m able to to get naked and naughty with my man?!! I’m also hoping that this blog will help others out there that have Dysplasia and know nothing about it. Until 10 months ago I was one of those people, and finding other blogs and a great yahoo group for women with dysplasia has been both brilliant and terrifying! So there you have it, that’s what it’s all about.

Right then, here I am 30 years young and facing major surgery. Not by any means am I the only one with impending knife work, and I’m very lucky that I’ve nothing terminal, so it’s not the end of the world – at least not the end of the world as we currently know it!

I’ve had issues with my dodgy ball and socket joints for some time now, the current most prominent issue is my hips, I have Congenital Hip Dysplasia (CDH). This means the sockets that my femurs are supposed to sit in aren’t properly formed and are too shallow, so I have to have my acetabular chopped into bits and moved around to build real hip sockets. At least that’s my way of describing what is known as a Periacetabular Osteotomy. The real medical description can be found on a fabulously informative website – listed on the links page.

How did I get to this point?

 

Well I’ve had soreness and stiffness in my hip joints on and off for around 10 years, specifically my right hip. I first saw a doctor about it after the stiffness was so bad I was walking as though I was a 90 year old with severe arthritis.  After seeing a quack of a doctor who told me that at the age of 23 I did have arthritis and would have to spend the rest of my life taking pain killers I left the issue alone for a few years, and no I didn’t spend my time popping pills. For one thing they didn’t make much difference on the occasions when I was in pain, and I’m not one of those people that’s happy shoving medication down their throat at any given moment.

The occasional ibuprofen kept me fairly hobble free for a few years until around Easter 2007 when on hols after a 5km (very short and easy going) walk I was limping and hobbling my way round like the aforementioned little old lady. Not a happy bunny I went back to the docs (a different one) and got referred to the local hospital’s Orthapaedics department.  On arrival I had a couple of X-rays, and then sat down to wait for a consultant who then proceeded to bend and stretch my clicking hips at all sort of angles. Once he’d assessed me, we sat down for him to explain my options;

“There’s one of two things we can do for you”                                                                           
hmm brilliant, I thought, either tablets or physio, here it comes……..                                  
“We can either saw your pelvic bone or your femur” 
urm ok, not quite what I expected.

And there it was, the moment I discovered I have Dysplasia. That was nearly a year ago now, and I can’t really remember much of the conversation after that point. The consultant and I looked at my X-rays and he mentioned something called Periacetabular Osteotomy (PAO) of which I had no idea, so asked him to write it down for me and quite rightly he pointed out that I would ‘go home, look on the net, and scare yourself silly’. Oh how right he was.