New hips for old

15 years later… 

It turns out that ceramic hips fail at the same rate as metal, even though they don’t wear as rapidly. The bespoke hips also have some mechanical design issues which weren’t tailored appropriately enough. Plus there are bone spurs growing on the outside of the femurs from the pressure of the femoral shaft against the bone.

The trouble is, hip replacements last a finite amount of time. The average life expectancy of them being roughly 15 years, give or take 5. Each revision uses up more bone and is more difficult to fit. Additionally, revisions generally last less time than the previous ones and are often less effective. So, at the age of 38 I’ve tried to go as long as I can before having another replacement.

 

In two weeks time I will be recovering from my 9th operation on the left hip. It’s pretty much 50:50 whether or not the operation will help me. Because neither the socket or shaft are loose there is no clear problem to go in and fix. There are three mechanical and placement issues with the replacement but resolving these won’t necessarily make much difference to my levels of pain or function. My consultant tells me that I will probably always need crutches and have a limp. It’s a case of how prominent it is and trying to give me some sort of quality of life.

 

Everyone tells me about someone they know with a hip replacement who recovered in x number of months, is now running marathons, has a brood of children, working full time, etc. etc. All of which make me feel terribly inadequate!

Trying to explain that at the age of 38, having a revision hip replacement is actually a pretty big deal (because of the long-term implications for needing future ones) is not easy.

Trying to explain that this is the 9th open surgery on that particular hip is not easy. It means that there is already a mass of scar tissue, muscle damage (the muscle itself is full of scar tissue and cannot recover), nerve damage and other tissue damage, all of which means it will take more than a few months for just the soft tissue to recover (often 2 years for the muscle).

Trying to explain that the outcome and recovery of this surgery is a complete unknown shot in the dark, is not easy. The multiple surgeries pre-existing the hip replacements mean that there is a lot of damage and little bone to play with. My body has had to deal with a lot. There’s no knowing how smoothly the current replacement can be removed. It may entail breaking the femur to remove it. There’s no knowing how easily a new hip can be implanted. All being well it will be cemented in, fine. However, if it proves more tricky it may require a bone graft, pins, and plates. The femur may fracture. I may be up the next day (if it goes well) or I may be non-weight bearing for at least 6 weeks. The very worst scenario, besides infection etc., is that they can’t get a new hip in at all and they close me up without one. No, I hadn’t known that was possible either…

For the first time in my life I am comprehensively questioning my decision to proceed with this surgery. I am truly scared and concerned about how it will go. Previously, I’ve always been somewhat nonchalant about surgery. Anxious, yes, but sure of my decision. Perhaps the change is because of age, or having spent years now reading about chronic pain and medical journal articles about health care, hip replacements, etc..

On the plus side, the new hip may not be so prone to giving way and may reduce my pain and increase my quality of life. This is the hope that I’ve based the decision on after-all.

However, it’s all an unknown and that’s not easy!

June is Hip Dysplasia awareness month

In the lead up to my revision hip replacement, combined with June being hip dysplasia awareness month, it seems appropriate to share a little more of my history.

However, I do this with reluctance. In some ways I see it as irrelevant and perhaps not a positive one for others just learning of their child’s dysplasia. So please read this knowing the experiences people encounter now are, on the whole, much more positive with more successful treatment. This is just one person’s experience.

In truth, I have struggled to write the following. It’s a story I’ve told countless times but perhaps it’s to do with my present mood as I approach the next operation, or it’s the process of writing it, rather than narrating. So if this is a little dry or melancholy, I apologise to anyone who wishes to try to wade through it!

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I was born as ‘queried’ hip dysplasia, having ‘clicky hips’ as it was often referred to. Like my sister two years before me, I was put into double nappies and later reassessed. At this stage she was fortunately given the all clear but I was put into a Von Rosen Splint. I’ve been told that in 1% of cases. the Von Rosen splint can lead to avascular necrosis.  (Current evidence suggests they are safe and effective.)

I spent a number of months in the splint – 6, I think. Interestingly, only about 1 photo exists of me in the splint. This is something of a blessing though as my likeness to Winston Churchill was striking! I was given the all clear, though it was noted that there was still a query over one of my hips.

Aged 4 1/2 and I complain, ‘Mummy, I can’t come downstairs, I’ve got toothache in my hips’.

X-rays followed and a referral to an orthopaedic consultant at my local hospital. I was fortunate that this was a superb consultant who remains a source of support to this day. The x-rays were referred for a second opinion on treatment because of the severity of the bilateral dysplasia (worse in the left, as is often the case).

Aged 5, I had months with waist to ankle splints and then open surgery consisting of bilateral pelvic (Salter) osteotomies followed later with a left femoral osteotomy. Plus more months of waist to ankle plasters. It is believed that avascular necrosis had been present, creating developmental dysplasia of the hips.

Me at about 5 yrs old. Copyright belongs to Sue Main

Aged about 5 or 6, post second femoral osteotomy, this time left side only

My adolescence and childhood was spent on and off crutches and in and out of hospital, with traction, bed rest, etc. The nursing staff knew me well!

Aged 13 I had a second femoral osteotomy, this time on the right hip. At least now I was symmetrical for scars! I remember the night before the operation, looking at the side of my hip and thinking it was the last time I would see it without a scar.

I remember waking up to metalwork in a specimen pot on the cabinet next to me. I was about 6 then. When I was 13/14 and the metalwork was removed, I made a point of asking to keep it. Now it was a collection! I asked again when the next lot was removed, aged 22. I even asked if I could keep the hip replacement when they remove it next month, but sadly not!

 

Aged 15-17 ish, I had two good years. For the first time in my life I went a lengthy period of time without pain or using crutches. I met my first boyfriend and to him my dodgy hips were the stuff of metalwork in specimen pots, old healed scars and stories. When my family moved into a 3 storey house, he asked if I would have a room on the top floor. I said, ‘no, when my hips are bad I won’t be able to get up there’. He thought I was being the negative and pessimistic soul I so often was (am?!).

However, aged 18 the pain began again. Mostly I recall that experience with fear. Before those two years, the pain, crutches, school absences, etc. was just part of my life. Not easy or enjoyable and it is only much more recently that I have fully come to understand the multifaceted impacts on my life. However, I knew no different. I didn’t remember not having pain and intermittent use of crutches. Now I did.

 

Now I’d found that I’d got through an academic year without a single day’s absence. This after previously missing so much schooling that one year I was absent an entire term. I’d also found that it made a difference to my abilities. Clearly this link is not rocket science but it was something of a revelation to me as I’d always felt so stupid compared to my sister and peers. Now I began to see that perhaps I had more ability than I’d previously thought.

At 18 I was referred to a consultant at a specialist orthopaedic hospital. Cue bilateral femoral osteotomies and a forced gap year from my degree. Aged 20, it was found that a year after surgery my left hip still hadn’t healed and required a bone graft. I was taken in as an ’emergency’ in the Easter holidays of my second year at Uni to have this carried out. I was discharged on the day of my 21st birthday! I returned to Uni non-weight bearing and determined to complete the academic year, 200 miles away from home. I’m stubborn!

Ultimately the surgery wasn’t helpful and the decision was made (by me and my surgeon) to proceed with total hip replacements. These were made bespoke using CAD-CAM technology (computer aided design and manufacture) and are ceramic. The reasoning was that bespoke would be more appropriate and successful given the amount of surgery I’d had done previously – it would be tricky to get an off the shelf to fit successfully. The ceramic surfaces wear at a much slower rate than metal. This was important given my age. So, aged 22 the right hip was replaced and the left was done on the day of my 23rd birthday. I’d always said I’d like a new hip for my birthday… thank you NHS!

15 years later… will follow separately…

 

Brave new world: Efficiency at the cost of the person?

Last week I attended a pre-op clinic in preparation for my revision hip replacement next month. It’s fair to say that much has changed in the 15 years since I last underwent major surgery. Although some of my experience is new because I now attend a different hospital with different procedures, I was startled by the lack of humanity in the system.

At the pre-op clinic I was shunted about from one healthcare professional to another, clipboard awkwardly in hand with crutches, for them to tick off my list that they’d seen me – though it was phrased that I’d seen them, I wasn’t so sure. At one stage a nurse asked another, ‘Do you have Susanne? Can I have her next?’. I jokingly asked if I got a say…

I’d like to say that this system allowed for person-centred care but it felt like a highly effective system at the expense of individualism. Of the three or four health professionals I spoke to that day (not including my consultant, who has always been wonderfully person-centred in his approach to my care), only one treated me as an individual and took the time to find out what the situation is for me. She suddenly found that I am not a straightforward box to tick off and spent considerably longer with me than she expected. So, yes, I can see person-centred care is costly in terms of up-front resources but the potential is that by taking the time to find out about my individual needs, she will make my post-op recovery faster and easier. She also said it would help the nurses to have as much information as possible because they don’t meet the patient until they’re fresh on the ward from the recovery room.

At this hospital, like others, I will arrive on the morning of the operation, having followed hygiene protocols with body wash and nose cream, to ‘check-in’ my luggage and then join a waiting area. I will meet my luggage at my designated ward – to be determined during the op. While this sounds as though I am jetting off on an all-inclusive holiday I fear the ‘jet-lag’ may be worse and the culture shock considerable.

I am accustomed to being admitted to a ward the afternoon before surgery, meeting nurses, settling in and getting a feel for how things work. While many people may prefer the additional night at home, I think there is a lot to be said for this time to acclimatise – for the patient, their support network and for the nurses to get to know you; especially if you happen to be a slightly unusually shaped box, for example.

Of course, I fully understand and can see the efficiency of this system – I don’t doubt that it is saving money and has met many efficiency targets. However, when research shows that good communication and positive relationships with healthcare professionals and care givers aids our healing process it is hard to believe that this is the best approach. Additionally, research shows that being treated as individuals with our own identities (rather than ‘bed 3, revision hip’) lowers pain levels and heart rates, requiring less pain relief medication and leading to a speedier recovery.

Having had a lifetime of attending hospital appointments and undergoing surgery, I have just experienced the longest period in my life of not having open surgery. Previously I have been nonchalant about hospitalisations and I suspect my concerns about the forthcoming operation are influencing my feelings about these system changes. Perhaps the real issue is that I need the reassurance of familiar protocols? Oh Brave new world…