Hip hip, hurray!

Anyone who knows me or has seen me walking in recent years will be aware that I have longterm problems with one of my hips. In February just gone, I went home to Spain and was met at Barcelona airport by my brother. On the drive to my parents' house, Calloway asked exactly what was wrong with my hip, which had been freshly replaced 2 months prior. I started with "Well, you know what they did to my hip when I was a baby, right?"
"Not exactly, no..." he replied.

A lot of people ask about my hip, so I decided to use the 6-month-versary of my shiny new titanium hip as an excuse for a completely self-indulgent post about what was wrong with my hip to begin with and why I needed a replacement two weeks into my 25th year (and an excuse to show off my scar and some x-rays, look away now if it embarrasses you to see x-rays of my pelvis).

Congenital hip dislocation


When babies are born, they are checked for physical anomalies or deformities. One of these tests is known as the "click test" – the nurse will make sure the baba's hips are in the correct position. These checks are usually a good way to ensure everything will develop properly or to identify potential difficulties later on. Some babies fail the click test because their leg bones do not insert correctly into their pelvis. This is usually because the hip socket where the thigh bone inserts into the pelvis has not formed properly whilst the baby was in the womb.

This failure of the hip joint to form correctly is known as congenital hip dislocation (CHD). Approximately 1 in every 1,000 babies is born with CHD, also known as developmental hip dysplasia. That is remarkably common if you consider an average of over 300,000 babies are born every day. It is much more common in girls than boys, which is perhaps not surprising given our differing pelvic anatomies and, you know, that Eve spoke to a snake.

However, because human newborns are so plastic (think of how soft a baby's head is), in most cases CHD can be corrected relatively simply, by having the infant wear a hip cast or a special nappy. At its simplest, all it does is correct the angle of the joint and holds it that way, which then allows the pelvis and the thigh bone to develop together properly.

If hip dysplasia is missed at birth, that's another story. In many cases, people can go through their childhoods with mild hip dysplasia and only a real encounter loss of mobility and increasing pain in adulthood. Before my time, if severe CHD was missed people could end up with stunted growth in one leg and need an enormous platformed shoe on one side, even walking sticks or crutches early on. This doesn't usually happen anymore, but sometimes either a nurse is incompetent (or as I prefer to think of it, a normal human being who makes mistakes) or the baby is such a chubster maybe you can't tell if the hips click correctly. In case you haven't guessed it, this was the case with me – at least, both my mother and I assume this is why it was missed, as she has on many occasion cursed "that damn nurse" for not noticing the deformity only to retract with "ah you were very chubby though...".

I certainly don't blame the nurse, because I can't applaud the work of medical staff enough, especially those in working in hospitals.

Beluga whale in the bath... baba Xaali, circa 1992


First surgery

That was a long-winded way of telling you I was essentially born without a left hip. More specifically, the angle of my pelvis on one side meant that the hip socket (acetabulum) had not fully formed or was very shallow and, consequently, neither had the head of my thigh bone (femur) developed. If you think of the hip joint as a ball and socket, well, I was missing most of the ball and socket. Because this went unnoticed when I was born, my parents were none the wiser. Until I started trying to walk...

As I started trying to walk at 13 months old, my mom says I was sort of just dragging one leg behind me. This would have been because without the ball and socket anatomy to hold pelvis and leg in place, the femur would slip against the deformed pelvis when weight was put through it. That is when I was brought to the doctor and they confirmed I had pretty bad hip dysplasia.

At a year old babies are not as plastic as newborns, so a special diaper was not going to cut it with me, I needed surgery. I only recently thought it important to find out the exact surgical procedure I underwent, because although my parents had the rough details, doctors had never really told the young artists the technical medical term for the operation. I now have copies of my medical records from Dublin, which sounds more useful than it is for two reasons:
1. They comprise a stack of daily notes taken from me on the two stints I had in hospital for this condition.
2. Doctor's handwriting.

However, I know I had some sort of hip osteotomy. Based upon my mom's description of what the doctors told her and looking at my own x-rays from more recently, I may have had a Dega or a Salter's osteotomy. Nomenclature aside, if you think about your entire pelvis as a butterfly curving it's wings inwards, they cut out a piece of my pelvic butterfly's forewing (iliac crest) and inserted it into the poorly developed bottom wing, ie my lower pelvis. Before I confuse everyone, here's is a rough drawing (apologies to any of my medical friends for the sloppiness):
And here is an X-Ray of my corrected – although at this point 17-year-old and 21-year-old arthritic – hip. You can still see the section of bone that was removed from the iliac crest at the top (yellow arrow), and even the outline of where it was inserted (red arrow):

Hip at 17. Yellow arrow indicates where the section of bone was removed from the iliac crest and red arrow, the outline of where it was inserted. The green and red shading is to highlight the differences between a good-looking joint (green) and a deteriorating one (red).

If you know me, you won't be surprised
that I was unable to keep still, even with
legs strung from the ceiling.

Before surgery my legs hung from the hospital for a couple of weeks and then had a successful surgery. Relatively successful at least. I mean months after the joint began developing it turned out the angle still was not entirely right or something so they had to dislocate the hip and reposition it, but after my second stint in hospital and by nearly 2 years old I was on the road to recovery.

I still had some time to go in my stylish hip cast. Apparently the cast made a nice still surface for pigeons to land on and certainly kept my legs still enough for my older brother Nathan to tickle my feet (or so I'm told, thankfully I was either too young or too traumatised to remember).

Arthritis

Growing up, I felt relatively normal. I've always had much less rotation and flexibility in my bad hip than my right hip, but I don't remember thinking there was anything wrong with me until late childhood / early teens. That was pretty much because my parents tried to discourage me from certain sports. I don't remember any pain until early teens and even then only very occasionally and acutely. I reckon these pains or occasional "clicks" that rendered me temporarily (seconds to minutes only) unable to move or stand on that leg, were more to do with my growth spurt at that age rather than any real joint degradation at that stage.

Also, I know what you're thinking "Growth spurt, Xaali". Yes I am still short, but until 13 I was truly tiny, grew loads between 13-14, and stopped forever. Or did I...

At 17 pain was considerable during and after sport. I've always loved football and generally running around like a loony, so I spent my childhood and adolescence doing a massive amount of sport, including everything I had been advised not to. It is no real surprise then that, with my medical background and my love of high impact activity, I should be diagnosed with osteoarthritis before turning 18.

Hip at 21. Yellow arrow indicates where the section of bone was removed from the iliac crest and red arrow, the outline of where it was inserted. The green and red shading is to highlight the differences between a good-looking joint (green/blue) and a deteriorating one (red/orange).

When I was younger I would naively go to the doctor expecting to be fixed – at least expecting to leave with either some medicine or some advise on how to get better. It didn't really occur to me that actually some things just don't get better. It came as a bit of a shock hearing that all I could do was avoid putting myself through more pain (sport), though the pain would grow over time no matter what I did and mobility would decrease until I needed a new hip.

It's not the worst thing in the world, there are FAR worse things to be diagnosed with and I am in no way trying to induce pity, but it was something that was really hard to hear at the time.

I behaved myself and took up swimming, I swear.

If you're still reading I presume you know me quite well. If so, you may be scoffing at that last statement, as you will know that since 18 I have run around jungles, clambered up hills in the rainforest, played football, jumped around walls and trees, etc – not exactly "behaving myself" as far as my hip is concerned.

What I'd like people who know me and especially people who care about me to understand is, I only stared overacting and jumping about and running around again when the pain became constant, when there was no relief whether I was active or not. So if I could distract myself or have adrenaline ease the pain for all of half an hour by running about then I'd suffer a little extra pain afterwards. I was not putting myself through pain unnecessarily or through stubbornness, by then the pain was part of me regardless.

Drugs

Since 2014 I have been on increasing amounts of prescribed opioids (mostly just codeine and tramadol) in addition to your typical paracetamol and ibuprofen, occasionally some steroids. This was only after persuading my GP in the UK of the severity of the situation. Despite having being diagnosed with arthritis nearly 5 years earlier, she seemed to think it unlikely my situation could be that bad.

After much nagging (my specialty), she eventually resolved to referring me to a physiotherapist. He was shocked and appalled that I hadn't already been seeing a specialist, as my leg seemed too far gone for him to work with. He referred my to hydrotherapy in a last ditch attempt to see if the muscle could be strengthened without pain, but in the meantime he was sending letters to my GP trying to get her to refer me to an orthopaedic surgeon.

Following painful hydrotherapy and months of wait, I saw a rude hip specialist who somewhat reluctantly sent me for x-rays and MRI scans. To reiterate – I was born with a named condition, I had already had surgery as an infant, I had already been diagnosed with osteoarthritis in my late teens, I had X-rays spanning my whole life, including ones at 17 and 21 showing deteriorating arthritis. I was taking daily pain medication, including mild opioids, at 22 years old.

Mr S.

After many administrative f*ck-ups that I won't go into for the sake of your sanity and my own, I eventually got my scans and saw the head orthopaedic surgery consultant of the team of doctors I had been seeing, who I shall refer to as Mr S. After a few minutes of examining the X-rays and MRI scans and occasionally glancing back at me, he turned around and asked, sincerely, "How does this affect your life?".

THANK YOU.

He admitted the joint needed replacing, but if I could delay replacing it for even a couple of years, all the better. The only way I could afford to delay it was to eliminate the constant pain and painkillers had thus far done little. The joint was too far gone for arthroscopy (keyhole surgery) as they could correct some of the deformity but not undo the damage to the cartilage and bone, which would have no effect on pain. So other than surgery we decided on a cortisone injection into the hip.

Cortisone is a steroid, so reduces inflammation but in the long term can have various systemic side effects. However, some of this can be avoided when injected straight in the troublesome area. I've heard both rave reviews and rants about steroid injections for joint pain, and even Mr S. admitted in some people it can give over a year of pain relief while other people get nothing from it. I was confident this was a magnificent solution and I was going to be bouncing off the walls again.

Alas, my body seems to be as stubborn as my mind, so the steroids didn't really work.

Last resort

Given his tone, I think Mr S. may have felt he'd have to convince me that major surgery was the only way forward with the state I was in. First time I've left a medical appointment in tears of joy rather than frustration. I pretty much signed the consent form without thinking about it – I didn't have to, I'd been thinking about it since I was 17 and wishing for it since 20 years old.

Although Mr S. wanted this done within 3 months, for administrative issues – in addition to being diagnosed with a mild form of haemophilia and metal allergies, convenient for someone needing joint replacements –, months passed, pain increased, and mobility decreased. Used to falling through cracks in the system by now (admittedly a complicated name doesn't help that), I sent a letter to Mr S. just to remind him I was still waiting...

Two days before my 25th birthday I got the best news I could have hoped for: surgery appointment just two weeks from them. I was shaking so much I couldn't read the letter properly, so my wonderful flatmate Emma had to for me. We were both ecstatic but still scarcely able to belief it, I felt compelled to send a pic of the letter to surgeon friend Adrian just to double check the letter meant what I thought it did. I believe I then had to retreat to my room to cry. I was emotional to say the least. Handily, I was having a birthday party that evening, so I could announce the good news to my friends.


Hipster


Post-vomiting and swearing down the ward after coming
round from the anaesthetic. 6/12/16

Out with the old and in with the new. It was bye bye to Hippie and hello to Hipster. My mom, Orna, came over to Manchester (UK) from Spain to be with me and look after me; thank god she did and I am eternally grateful that even if I'm not the best at showing it.


It was a pretty horrific week in hospital, wrought with morphine intolerance, pain, weight loss, ... they were 7 difficult days I don't want to go into, but in between the unpleasantness, I got some happy photos and so many of my amazing friends came to visit me at every visitors slot available. I really do appreciate all the support I got from everyone who visited me, texted me, called me, sent me thoughtful and entertaining cards, gave me dinosaur and spider toys, brought me grapes and chocolate I was too sick to eat but definitely gorged on post-hospital... You know who you are and I cannot thank you enough.



Tammy Tarquin the T-Rex was keen on the morphine. Myself, not so much

They'd strap me to a big weight so that I couldn't turn over, especially when sleeping

Tammy T stealing my grapes

Bit of a hypochondriac, that one.
Clearly my extendable scratchy stick (shoutout to Anne L for giving me that sanity-saver of a gift two weeks prior) clearly entertained Jade and Ciara, two of the marvellous friends to visit me in hospital. Being pumped full of morphine is an itchy business.


Out at last

Time passed slowly in hospital, but after a week I was released and went home to a flat full of equipment.

Nurses came around to my flat to jab me everyday until they were confident I could do it myself, physiotherapists came every other day and then every week for a couple of months. This National Health Service (NHS) is a bloody marvellous thing, I tell you. I really can't sing the praises of the NHS enough, and any administrative screw ups along the way I fully blame on the fact that the NHS is under-funded and under-staffed because of a careless government willing to strip it to the bones.

After a couple of months on crutches I started being able to go to physiotherapy appointments in the hospital rather than have them come to me, I went back to work and then my PhD. If you're still reading, the recovery would be an even more boring process to drone on about than the rest, but it has completely changed my life.

A hip replacementee's worst nightmare: grabby stick falling on the floor and you're still weeks away from being able to bend over or crouch....

I didn't have a bit weight to strap my legs to in order to prevent myself from rolling onto my side – and potentially dislocating shiny new hip – however sleeping with a big box of toiletries between my legs did the trick. It did take getting used to walking into my room thinking there was someone under my covers...

Staples came out a little longer than they usually would due to my wimpy blood.

Hip at 25. Uncemented total hip replacement, screws and all. These x-rays were taken shortly after the operation when I still had staples in my leg, as you can see on the x-ray on the right.

Hip at 25. The socket and the long-bone insert (including the ball at the top) are titanium. Between the socket and the ball of the long-bone insert there is a ceramic cup of sorts, to reduce metal-on-metal friction.


Six months!

Happily standing on the hip all day.
It is six months since my first hip replacement and even though I still can't do all the things I want to be doing (run run run), it has completely changed my life. Even just the fact that I am no longer in constant pain was enough to change my life, it's not really a feeling I can put into words. I mean, I'll be heading back out to Ecuador next week and then Colombia for field work, that's how quick the turn around has been.

I really can't stress enough how grateful I am to live somewhere which such fantastic public health care, with so many incredibly dedicated and talented doctors and nurses (and I'd like to point out, almost all of whom were either foreign or second-generation immigrants). It really is amazing what they can do, to think that these days something as invasive as a hip replacement is just standard procedure.

Also, my brilliant family and friends. Not just after the operation, but before. You've supported me through years of pain and you didn't stop for a second when I was admitted to hospital. Thank you so much to everyone. Again, the texts, the skype chats, the visits, the cards, ... every single ounce of support I got from you is wholly and sincerely appreciated and really made a difference and kept me sane (well, sane as I'll ever be...).

Back to work and all – sort of.
Someone did point out that my scar protrudes from my shorts,
but how bad. It's just a different sort of tattoo.

Comments

  1. Very informative reading. Even though I was there from the very beginning ( that pic in the hospital cot I will never forget. My heart was breaking for you). I know and understand so much more than I did from reading your explanation. Your a complete and utter trooper Xaali I have so much admiration for you and all you have achieved in your young life so far dispite all the pain and frustrations you have encountered. Well done you xxx.

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    Replies
    1. Thanks Ann :) Even I had to do some digging to find out this much information! Through a combination of having access to scientific literature, knowing an orthopaedic surgeon (not the one who operated on me haha), and being really good at nagging for information!

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