Walking in a winter wonderland?

So this last week has seen a significant proportion of the UK covered in a blanket of snow. To be fair, I think snow makes the landscape look fabulous, conjures up romantic images of snuggling down with a hot choc by a roaring fire and dreaming of the future. But the reality for someone who's mobility impaired, snow and ice are nothing short of a nightmare.

It affects you physically. My muscles have stiffened up so much as the temperatures have plummeted well below zero. This has caused a fair amount of pain in the hip by the end of the day and today I've been suffering a suspected trapped nerve of some sort probably due to tense muscles. It has eased off in the last hour after using my TENS but it was a real tear-jerking sharp pain every time I put weight through my right leg.

Probably my biggest problem is down to the over-exaggerated external rotation I have with my right leg. I have to be excessively careful on any slippy surface as my right foot naturally swivels outwards and if this movement occurs too fast, I pull a lot of muscles around the hip and groin. This has happened on an over-polished laminate floor once, imagine an icy surface! The pain that accompanies this jerked movement is indescribable. I can only liken it to someone trying to dislocate my hip with a sharp pull of my foot and failing. And that pain lasts days. It can be incapacitating.

So any pain induced due by slipping in the bad weather starts to affect you psychologically. You start to display avoidance behaviour as you don't want to go out where there's a potential chance of slipping or falling (even if its a light frost). Your social life might start to suffer as you try to minimise any trip you must make that involves going outside. You then start to compulsively worry - it starts off as worrying about slipping and falling, and then escalates as you do begin to avoid going outside to worrying about getting food and other essentials into your home.

It turns into quite an exhaustive cycle. You slip or fall on the snow or ice, you are now in pain, you avoid going out until absolutely necessary, your muscles are tense and stiffen up, thus more likely to slip or fall and the cycle begins again.

I'm constantly amazed at people who seemingly just stride across large patches of thick sheet ice and they stay upright! I shuffle, stop, shuffle, slip, stop, calm down, shuffle shuffle......and eventually get to my destination, hopefully without falling, and by that point both my legs are aching and exhausted! That eventually leads to hip pain later in the day, so I don't even have to slip for this weather to cause me pain! Can't win eh?!

Only 2-3 more months of this, bring on spring time!! Merry christmas :o)

Hip block booked

So I have the date for my hip block. Travelling to Birmingham for my appointment on Monday 18th January. As they want me in for 7.30am and I live two hours away, they've said I can come down the night before and stay at 'Hotel NHS'. Kinda sucks as no one really wants to spend an unnecessary night in hospital if they don't have to. At least then my 'hospital buddy' (aka my mum) doesn't have to get up at the crack of dawn to come with me, they get to actually have breakfast - whilst I have to fast from midnight! - and potter down to meet me to make sure I get home safely.

Hopefully I'll be able to reduce the amount of pain meds after the block. Which means my stomach won't take such a hammering and I'll be able to have a drink (I discovered that me, dicloflex and alcohol don't really mix on friday night!).

Can't wait to get my actual surgery date now. They said I won't get confirmation until about 6 weeks before. Mmm.... Might be phoning early as the secretary always seems to know well before 6 weeks :o)

UPDATE:
I was curious as to why I was being starved for this procedure as its normally done under local anaesthesia (like being at the dentist). Turns out they are putting me under general anaesthesia for 10mins or so to do it. Mr.Orthopod's secretary couldn't tell me why, but I'll find out soon enough! It may be due to the lack of synovial space, or it may just be easier and quicker for them?? Watch this space. I'm not adverse to the GA for 10mins, I've had it before when they did a manipulation under GA to assess range of motion. Oh, I feel like an old hand at this! *sigh*

I love my TENS!

Well, I'm impressed, it's doing it for me! Been slapping it on for half hour to an hour every evening (or so) and I've noticed a few things. I'm sleeping better, the muscles are less tired and I'm getting less referred pain down my leg (not completely eliminated, but significantly so). But the biggest thing for me has to be that I seem to have regained more of my range of motion in the hip. For a while now when the pain was bad I wasn't completely extending my hip back in walking stance - I was getting a stabbing pain and grating sensation when doing so. The days after using the TENS I've been able to extend my leg almost normally, certainly without pain and with less grating.

I'm very happy with this as it means I can keep my muscles functioning as close to normal as possible. As my surgery is at least 4 months away, I've been worried about muscle wasting as this will seriously hamper the recovery time after surgery. If I can keep doing the physio exercises and walking as normal as possible, this means I'm already helping myself massively.

Right, time for my evening zap!

TENS

So tonight I tried out a TENS unit (transcutaneous electrical nerve stimulator). At first glance the unit is a lot smaller than I thought, and as it has a slider mechanism it looks like an oversized mobile phone. The electrodes are really easy to place and its very easy to just plug-n-go. I placed the electrodes as suggested for hip pain in the booklet, one over the greater trochanter region and one down on the side of the buttock. Pick a programme and go!

Well, it goes and you slowly increase the intensity of the pulse - otherwise it would be a bit of a shock! I found it seriously tickly for the first 5 minutes, but that subsided. I tried out a few of the different programmes and quite liked the sensation of increasing waves of intensity, this setting actually soothed away some of the muscle ache I'd been having all day in the glutes. So first try and I like it.

I wouldn't swap it for the analgesics but as I still get breakthrough pain with the painkillers anyways I thought it was worth a go to ease the extra aches and pains. I need to play around and customise the settings for me, along with better placement of the electrodes. But I like it, lets see what its like after a week.

Again with the stupid....

Guess what I forgot to take before bed last night!

I got cocky, thought 'hey, this week has been fab, maybe I could just take the next pain med in the morning'. I don't want take the pain meds for many reasons - they mess with your stomach, digestive system, constipate you and NSAIDS can actually damage your cartilage (well, the cartilage that is left in the rest of your body!). Perhaps maybe I got the balance of medication right, once every 12 hours and I'm feeling fab. Always in hindsight!

I'm currently in so much pain I cannot get my boots off. I cannot put weight through the joint without tears coming to my eyes. I want to scream at something and throw things across the room its so painful. I feel angry and I feel emotional. I can't remember what its like not to be in pain.

I know it will be better tomorrow. Until then, could someone come get my boots off?

Consultation day

The day I've been waiting for, the results and 'what's next'. I've been having strange dreams recently about my orthopod turning round to me and saying 'there's nothing wrong, what are you complaining about!'. Well, there's most definitely something wrong. There's a serious lack of cartilage over the major load-bearing region. The pelvis shape looks distorted on the right side, that's due to the pelvic osteotomy I had (there are two remnants of titanium pins lodged in the pelvis too).


The lack of cartilage is due to problem number two (or is this a 'which came first, the chicken or the egg?). A proliferation of osteophytes (bone cells/spurs) on the back of the femur head. This has caused the femur head to protrude forward away from the socket and, as the new bone is nobbly, it's worn down the cartilage.

What's next? A hip resurfacing. I have to call to make an appointment but the earliest available time would be easter apparently. I've also been offered a hip block in the mean time - I said I'd think about it. I think it would probably be a good idea though given that treatment could be months away. Scary, giant needles! (have your pelvis realigned no problem, giant needle eeeeeeeeek!). I think I'm just relieved to now know exactly why I'm in so much pain (and what's making that funny crunchy noise....mmmm) and that treatment is on the horizon.

Playing catch up

The other morning I forgot to take my pain meds, clean forgot, and instantly remembered the minute I started walking to work. I then made a bad decision, not to stop and take some but wait until I got to work to take them. Big mistake, huge! By that point I knew I was going to be playing catch up for the rest of the day. And I was going to be on my feet all day. My leg was aching from hip to knee by the time I got to the office and shovelled the first dicloflex down my throat. By lunch it was still raging - down went two paracetamol. Nup, no effect. I waited til 4pm before taking the second dicloflex. By 6pm it was easing up slightly but by this time both legs are feeling like they've been exercising for two days all the muscles are aching. Spent most of the evening with hot water bottles glued to the hip, took another dicloflex about 10.30pm and went to bed. Woke up totally pain free. First thing, took dicloflex before leaving for work. Will not be forgetting in future!

What an awful day pain-wise. I think most will forgive me that I burst into tears about 9pm thinking it'd never go away. I hate being dependent on painkillers. Hopefully next week's consultation will bring some sort of hope of treatment, although I'm slightly nervous about the results of the CT scan.

What's in a name...

I've been having a fabulous week, hip-wise. Last friday I got a repeat on my pain meds. I'd popped into the surgery during my lunch break to get the prescription and then wandered across the road to the local pharmacy, as usual, except this time I found them shut for lunch! Great, I'll have to pop into Boots later on my way home from work instead I'm thinking. This turned out to be the biggest blessing in disguise!

I've been taking diclofenac when I get hip-related pain as it is really the only thing that 'works'. I'm sure there are stronger painkillers I could take, but I get very sick with the likes of Tramadol or codeine-based painkillers. So, normally I get whatever brand of diclofenac the local pharmacy stock. Whatever Boots brand of diclofenac stock (which happens to be Dicloflex) is like a completely different painkiller!!! Since friday I've felt very little hip pain whilst taking them. The other brand has been making me think the worst about the deterioration in my hip as they were only ever able to take the edge off the pain. I'm beginning to wonder if perhaps the painkiller just wasn't up to the job? Or a bad batch? Or maybe I really am just having a good week and the joint is less inflammed?

It's hard to say. Part of me doesn't care either, it feels good! This is when the guilt sets in, 'I'm a fraud, the hip is totally fine mr.orthopod, honest! I'm sure you have better things to do'. I wonder if other people find the same with different branded painkillers. Voltarol is probably the most commonly recognised brand name of diclofenac and I know they 'work' for me too. I might have to do some research into how the drugs are constructed to figure out whether different brands deliver differently. As far as I'm concerned there's a massive change in one's quality of life with a painkiller that works and one that doesn't.

Here's hoping I haven't just jinxed myself either :o)

A few notes on physiotherapy

"What do you expect to achieve through physiotherapy?"

"I want to improve muscle tone to help improve and maintain stability around the joint". I don't expect physiotherapy to eliminate my pain. I hope that I can ease a little pain though! But honestly, when it's as bad as this, physio very often aggrevates and enangers the joint. My physio goes by the principle that you 'work to tiredness' not to pain. Most of the time this does work, but psychologically you feel like some weakling who can only repeat 3 times and has to stop as if she ran a marathon. Oh well, that's between me and the physio ;o)

I want to keep my muscles as strong as I can get them (we're not talking olympic status here!) in case I do have to have some form of surgery in the future - could be next year, could be 10 years, who knows. Hip sugery will significantly reduce your mobility for a short period of time and whilst your bones heal, your muscles waste. But, muscle has a form of 'memory'. The better the tone they had prior to any surgery, the faster they bounce back afterwards with exercise.

Sometimes its hard to commit to the exercises due to tiredness or pain, but its so important to do them as instructed. I'll admit, I only ever managed to fit in 2 of the 3 times a day my physio asks of me, I'm not gonna beat myself up about that. But I make sure that when I do them, its quality not quantity.

This is out-patient physiotherapy. In-patient physiotherapy is something else altogether!

Doughnut day

Well I had the CT scan and x-rays today. Two hours down to Birmingham, half an hour in the hospital, and back home again! No waiting at the ROHB this time - turned up a little early for the scans, as requested, and they took me straight in. There was only one other person waiting. Mind you, the longest I've ever waited for an x-ray at the ROHB was 10mins, compared to 1.5hrs elsewhere! This is the NHS, not private, very impressed.

I love the CT scanner, its like a giant doughnut! This time I guaged how high up the bed goes though to get you through the centre - about 4-foot from the floor, wouldn't like to roll off the rather narrow bed you lie on!



It also dawned on me earlier that its been exactly 4yrs to the date of my TPO surgery. How odd to be back there today.

Online Chicken Soup for the painful soul

I have become acutely aware that a pain patient blog can become an uncheerful place, a place to have a moan or rant, a place that might give a false outward appearance of the persons self-esteem or confidence. But its place, by its very nature, cannot avoid the dark that pain creates - but shedding light on it by blogging or joining online communities can alleviate some of the psychological and emotional burden. Most of the time I do not think about my condition or focus too hard on the constant daily waxing and waning of pain - or I'd probably not get out of bed in the morning. Ironically, I'm a pain scientist so I do actually think about pain all day in a different context, but it has allowed me to compartmentalise what I feel into physical versus emotional.

When I was told that surgery was my only option to alleviate the progressive arthritic hip pain, and at that time I could barely walk half an hour before giving up, I spent a lot of time researching all I could on the subject. I also submerged myself in the world of online support sites - HipUniverse, SurfaceHippy, HipsRUs(UK). Some of the people on these sites gave me the most tremendous support and advice - I cannot thank them enough as it made my hospital experience and recovery a much better time. When your leg swells up to double its size post-op not many people will have thought to tell you to bring some knickers a size up from your norm to accomodate it!!

I have great respect for the people in these online support communitites that have taken the time to answer questions and provide insight to what you can expect for a variety of situations. There are far too many out there that suffer alone as they can't communicate their pain with their families and friends, either through a lack of understanding or fear for the future. It does not have to be that way.

No rest for the pain patient

I've just this weekend returned from a glorious weeks holiday in Spain. It was bliss - the heat was great, the food was better, and I was off my feet for most of the week! Normally being off my feet would help any hip aches and pains, but not this time. And arriving back into the beginning of autumnal UK weather yesterday has left my hip joint screaming at me (because I can't think of anything else that could have set it off? I haven't been out anywhere except the supermarket).

I'm beginning to think that I might have a bigger problem that anticipated. I know I will just have to wait until I see my orthopod and there's no point in speculating until the point where I wind myself up mentally. There's not much to be done about it right now - except rest and light exercise (time to put the dancing shoes away til next time eh? ;o)). It's in these moments that I just want to ask him to resurface or replace the joint because I'm fed up to the back teeth of the constant ache (inbetween the severe pain of putting your full weight through the joint when walking). I'm stubborn and refuse to use an aid - it has crossed my mind, but I also know that its a slippery slope to becoming dependent.

I was given a 70% chance of my PAO (periacetabular osteotomy) working out for me long term - 4 yrs on and I'm thinking I may fall in the 30%. I was informed that the procedure of reshaping the femur head in addition to the PAO has only been done in a handful of people in the world and in the last 5 yrs (prior to my surgery in 2005). But the PAO couldn't have been done without reshaping the femur head as it had aquired a strange compressed ovaloid shape, presumably from the hip socket being so shallow and flattening it slowly over time. Also, if I didn't correct the postition on the socket within the pelvis, I might not be eligible for a resurfacing in the future as often a hip dysplasia requires the resurfacing ball and socket combined with a pin (see picture). As far as I know the pin to to aid stability and allow bone growth into that area, thus covering the prostheses better.


Fingers crossed something can be done when I visit my orthopod. The way it feels right now, I'd probably agree to anything!

Appointments booked

I am very impressed with the NHS right now. After I told my GP I wanted to see my old orthopod down at the ROHB, I got an appointment for the 17th Nov - just 2 months, and they were apologising to me for it being such a long wait (I've waited 6 months before, I'd forgotten how good the ROHB were). I'm also booked in for a CT scan and regular X-ray on the 12th Oct. I was a little taken aback by the request for the CT scan, but I guess they don't want to pussyfoot around something as serious as this. And, of course, the less time I have to wait the better!

I'm having the biggest deja vu right now.

I don't know what to recommend

“I don’t know what to recommend”

Being told that by your GP when you’re in about 5 different kinds of pain is like being kicked when you’re down. Unfortunately, this happens way too often to pain patients and this is about the fifth GP now that’s told me something similar over the years.

So I sigh and tell her what I need – more pain meds, a referral back to the physiotherapist and a referral back to my orthopaedic surgeon to check everything out. And I get what I want without even a quibble – I wouldn’t ask if it wasn’t necessary. Since my TPO surgery I have cycles where the pain suddenly came back, but rest and paracetamol was usually enough to set it all to rights again. However, this year, that hasn’t been enough and this past month has been horrendous. Last night I discovered a new pain in addition to the ‘regular’ pains that I’ve been feeling – a tender spot high up over the greater trochanter region of the hip, which wakes you up when you unconsciously roll over onto your side in the night! I feel somewhat betrayed by my own body, again.

Physio starts at the end of the month and I have to call the Royal Orthopaedic Hospital Birmingham (ROHB) tomorrow for an appointment. When it concerns pain, action is better than inaction, it’ll only get worse (‘if you sit in the middle of the road, you will get run over’ Chinese proverb).

Chapter Two

It's been a while (well, about 5 years!) since I last blogged and I think it's time to return to where I last left off, re-cap and update the situation. I think I'm going to slowly re-cap everything over a few blogs soon and give you the Cliff Notes version just now.

I have congenital hip dysplasia (or developmental dysplasia of the hip as its becoming more commonly known as) which mainly affects my right hip. My left hip has been, and continues to be, asymptomatic. I was in and out of hospitals throughout my childhood, mainly physiotherapy, no surgeries or casts. I had no real problems until I hit my 20's. Over 7 years things started to deteriorate in the joint until the point where I could not walk for more than 30mins at a time without great difficulty, but sitting wasn't any better as the pain would radiate down the full length of the leg. As for sleeping....well, that was the clincher for me, I'd had enough. I was recommended that I have a periacetabular osteotomy (PAO; or triple pelvic osteotomy, TPO) rather than a resurfacing or replacement. October 2005 I had the PAO surgery, I was 27.

I consider this part of life Chapter two: post-surgery.



Photos I have from my PAO surgery 12.10.2005:

X-ray taken at the end of the PAO surgery showing the pins and plate securing the pelvis.

The two scars are below - the surgery is done from the front and back, hence two scars. They are nothing more than white lines now and don't look quite so angry.