Tag Archives: Birmingham

The nightmare of metal on metal hips continues.

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Whenever there are ‘ups’ it seems there are also ‘downs’. Life is a bit of a rollercoaster. We managed fine last summer. We had a holiday on the south coast and Kent. We managed to find self-catering accommodation with wet rooms etc that I could get into. We visited places that, mostly, I could access by wheelchair. All was well enough that my surgeon booked me in to have a new hip fitted in January 2018.

During surgery, he aspirated over a litre of murky turbid fluid and for a short time I had no huge lump on my left side. He told me though that he had removed so much tissue and muscle that he had stopped just short of plastic surgery, my femur bone was ‘spongy’ and my leg now looks like a relief of the Malvern Hills.

However, it was not to stay that way. Within days the fluid was coming back and swelling my leg and side up again. I was in pain as I stood on the hip and soon it had a significant swelling and was strangely bruised. X Rays showed I had not damaged the bone graft, fortunately, that had been put in to try to hold the hip in place as there was insufficient socket left and no adductor muscle.

I did some research online as I was trying to make sense of what my surgeon was telling me. The particles of cobalt and chromium from the original hip resurfacing do the damage to the tissue but are so small it is almost impossible to remove all of them, so they keep doing damage. My surgeon has already removed a lot of necrotic tissue and bone, the whole of my adductor muscle and part of the gluteus muscle. There are still areas affected but he cannot get to those because they are too close to major blood vessels, so chances are, like any tumour, these will keep re-growing. The x-ray does not show the fluid build-up, but he suggests in a few months we do MRI again, though watch its progress in the meantime. It could dislocate my hip, and also there is a one in three chance it will also happen on the right side. He hopes (!!!) – as do we, that things go better now, but there are no guarantees.

I started to have physiotherapy to build up strength, especially around the rotator cup in my hip. On March 25th on a trip to Bath, my hip dislocated while I was sitting in my wheelchair having lunch. We had an hour and a half drive back to the hospital. I was in hospital for a few days with the dislocation until my own surgeon could do the reduction as he thought he may have to open the hip. He also wanted to prepare a different cup to make it more manageable to keep it in place. He had great difficulty getting the hip back in, as it is a cup designed to be hard to dislocate, but managed to do it closed. Afterwards, he could not dislocate it again, and he is a big, strong man! He aspirated the fluid and took out one and a half litres of turbid fluid that also had large blood clots in it. It seems now that blood vessels are also compromised by the metal particles and tumours. The tumours, he believes are in my pelvis now and, once swollen, the pressure dislocates the hip. I was allowed out of hospital once I was fitted with a brace. Unfortunately, after three days of nil by mouth waiting for surgery each day, I had a urinary tract infection to contend with too, so a trip to the out of hours GP was necessary.

Within a couple of days, there was another bruise on my left side and pain in my groin. There is a concern about an aneurysm. I had a CT scan with dye, but unfortunately, the images were not good enough to see where the bleeding was coming from. Six weeks after surgery my hip dislocated again as I was sitting in my chair and reached to my right side to pick up my coffee from the table beside me. This is now the twelfth surgical procedure on this hip in less than five years – my fifteenth general anaesthetic and surgery altogether. It was reduced by a different surgeon as an acute case. However, we cannot carry on like this. Both my husband and I are struggling with chronic anxiety and depression and finding work difficult now. We have tried to be ‘normal’ in significantly abnormal circumstances for too long and are burned out.

The way forward now in summary.

My own surgeon can do no more and is referring me on to a Plastic Surgeon in a different hospital, as he can do more radical surgery. He:

Feels there may be enough tissue to manage removal and reconstruction.

Can feel at least two tumours.

Considers a 2-stage approach is necessary over 6 weeks to 6 months but is a major undertaking (his words!)

The first stage is complete removal of the prosthesis, cement, cadaverous bone and tissue, preparation, and biopsies to try to make a sterile space.

May be able to use quads muscle as a flap.

He has warnings regarding: 

Bleeding (to the point of exsanguination – though fortunately, they have a cell harvesting system – at least, I hope that’s good!) and that with internal bleeding already it may be that they can’t do anything safely.

The radical approach required will leave a large cavity

Issues related to lots of previous surgery – may not be able to find a way to work easily and cause both more damage and bleeding

Sciatic and iatrogenic nerve damage and femoral vessels – pain and weakness and possible paralysis

Inability to find enough tissue to work with once open

Infection is now about 10% instead of 1%. Actually, they both think the infection is still there but lying dormant

Length of first surgery would be about 4 hours followed by high dependency unit

He feels the waiting list is about 6 months – so we may yet be back to my local hospital with dislocations!

The other new consultant is a trauma hip reconstruction surgeon who works with the plastic surgeon. He:

Feels there probably is still some residual infection ‘hiding’ there.

Would want to do possibly 4 intermediate washouts and tissue debridement between stage 1 (removal of all joint and affected bone and tissue) and 2 (new replacement).

IV antibiotics again!

Will probably put in complete constrained hip – very limited movement – at an eventual second stage.

He warns regarding:

Infection – 10% risk

Inability to put a hip in and may be left without – known as a Girdlestone procedure and long-term antibiotics. I did have no hip at all from April 2016 to January this year, so we are used to that, although it being forever feels like a very big thing.

Despite this, both surgeons did inspire confidence in us and were open and honest.

All this ‘lovely’ news cost us £500, a 150-mile round trip and a panic attack from my autistic son because we were there so long without supper.

We have talked to our GP about funding now for this through NHS, although we are talking about a possible move to the area I can have plastic surgery. My husband’s parents have recently sold their house and are talking about pooling financial resources and us finding somewhere together so they can be on hand to look after us!!!

So … nothing to worry about!

In the meantime, the legal case against DePuy with a group action of 312 people with damage from metal on metal hips has failed. This means that my own group action against the pharmaceutical company is compromised and we do not yet know if a legal case can be taken forward. However, while at first, I had lots of time, there is a time limit on these things and for me, the legal process must start before the third anniversary of my first problem with the hip in October 2015 or I cannot take it to court against the company. They win in all ways while we continue to suffer from what feels to be their neglect in testing.

 

 

 

 

 

Dislocation nightmare

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Our parents were here for a fortnight. We went out visiting places and all was fine. They went home on the morning of the 16th just before I saw a client – all well so far. I took my son to the gym in the afternoon and decided to do my Pilates and physio exercises on the mats instead of walking. My left hip has always felt weaker than my right and so I try to keep the exercises up to strengthen it, even though they never seemed to be progressing much. That hip has always been a bit clunky too, and a few weeks ago I bent down to feed the cat and said to my husband there was something wrong – it felt as though it was popping in and out of the joint. Anyway, it clucked quite a lot during the exercise, but felt better once I’d finished. We drove home (in the mini!!) I went up to change out of gym clothes, bent down to take off my socks – and my hip dislocated.
It was quite a farce really. My son, who has autism, went next door to get my neighbour who is a nurse and she phoned for an ambulance. My quite small bedroom, with me on my side in 18 inches between the bed and the wardrobes and 2 ambulance personel and 2 paramedics in my room trying to give me morphine and work out how to get me downstairs, with my son carrying on as normal and getting his tea and the cat popping in to see what was going on. The concern was that, instead of 5 minutes away that day, my husband was 50 miles away and uncontactable until at least 4pm. As it turned out my son wasn’t able to get him until after 6pm. The neighbours took it in turns to come and check on him until he got home.
I had surgery on Saturday morning to put it back in and then found I had ‘bed rest’ but no explanation scrawled across my notes. I had been hoping once it was back in I was going home! Especially as I was on a general surgery ward and not orthopaedics, so no one knew what to do with me. Sunday morning I was visited finally by the surgeon who gave me the ‘good news’. Firstly because it had come out once, it would be more likely to do it again and secondly when they tested it in theatre in 2 particular positions it popped back out every time. I have an unstable hip. I saw a physio, they decided I was fine to go home but would need follow up. I was told if it came out again it would need to be a complete revision (replacement) of the hip.
Monday, we’d had supper, my husband took off my boots for me, I moved myself back on the settee – and it came out again. Almost a repeat of Friday as we don’t have a great deal of space in our living room either – too much ‘stuff’!! The ambulance crew eventually got me out and back to hospital where I spent the next 3 hours or so on a trolley in the corridor and the following 10 hours on the same trolley in a cubical. They certainly have some issues! I saw a doctor who was saying that late hip dislocation was usually down to soft tissue areas and I rather took offence (must have been the morphine!!) as I took it that he thought I hadn’t been doing any exercise with it and had allowed it to become weak (as it happens it may be the complete opposite – more of that in a minute), and they were just going to put it back in again and send me home. Not being great with pain I was rather afraid of this as it felt that it was just going home to wait for it to happen again – and in many ways it is. 
Tuesday, after an hour and a half wait for morphine, I was taken to a ward and told that I was not having surgery after all that day. I promptly burst into tears – I’d certainly lost my sense of humour by then. It did mean I could be consoled with a baked potato – until Sister turned up ranting because another Sister had a go at her – I was supposed to be in theatre and couldn’t go now. A doctor had quiet clearly written in my notes ‘no surgery – can eat and drink’ (I saw the notes) but had misunderstood when I had been talking with the senior surgeon that morning and thought they weren’t doing the manipulation after all but waiting for a replacement. I finally got to theatre on Wednesday and had it put back in. The up side, if there is one, is that there was a hip specialist able to pop in and I am now under his care. Trouble is, he wanted me in hospital until MRI scans and blood tests were done and I had supervised mobilisation, and possibly a brace.
None of that was possible. On Thursday everything went wrong on the ward and they desperately needed the beds. Two hours before my 24 hour bed rest was up I was dressed and sitting in the corridor waiting for my husband to pick me up while they prepped my bed for someone else. Physio said – walk unaided, yes you can swim, do your exercises, I guess you’re fine with stairs. Consultant said – crutches, no swimming, we’ll take blood, try to keep the hip in and I’ll see you in my clinic next week. As an outpatient rather than an inpatient I’ll have to wait considerably longer for the MRI. Mmmm!
The issue it seems is indeed probably soft tissue. I had a metal on metal Birmingham Hip Resurfacing (BHR) as these were being done for younger people who were still going to be able to be fully mobile. There now seems to be some evidence that the are failing in women. The metal when used is rubbing together and producing ionisation, found in the blood and causing toxicity issues (I had other problems with nerve pain and shakiness in my arms, which may now it seems be linked) and erosion of the soft tissues around the joint. This means the hip will not stay in and I am on extra strict hippy rules – no bending, twisting, allowing less than 90 degrees between my legs and torso, allowing my left leg to drift anywhere close to the centre of my body – or it will come out. Other issues involved might be my hyper mobility in my joints and also the way it was put in in the first place. Any and all of these might contribute and my husband has written to the surgeon who did the replacements in the first place.
So my husband is doing limited hours at work. My son can’t get out except for their photography course together. I’m in a chair trying not to move and doing as much of my work as possible by e mail. The joys of the hippy journey!




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Lions and Tigers and Bears – oh my!

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Lions and Tigers and Bears on my path! I was feeling a wee bit scared yesterday. Many years ago I was persuaded by my parents to train to be a nurse. Needless to say I was useless and didn’t last long, but that’s another story. When I qualified I worked in anaesthetics in theatre – including orthopaedics. Well you can imagine, my experience of orthopaedic surgery more than 25 years ago – of course nothing is different (!!) – even though, logically (and realistically) I know of course it is.

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Hip and knee surgery …….. well actually I’m trying not to remember the noise, the smell, the frankly barbaric pulling apart of joints – ok I’m lying – but I know it’s different now. I know all those elderly people (because it wasn’t done for younger people then usually) who were in bed for a week and more, then were still in pain, were an unfortunate product of quarter of a century ago.

tiger 2

So I’ve been looking at a newsletter I was sent weeks ago and hadn’t properly looked at because knowing too much and reading too much might make it ‘real’. I’ve been thinking very much of this in the 3rd person – as though it were happening to someone else.

It’s very interesting and about people who have had the surgery by the person who invented the procedure I will be having.

http://www.mcminncentre.co.uk/pdf/spring-2013.pdf

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It all sounds very positive! 

I also did a search for the surgeon who will be doing my procedures. He trained with the man who invented the Birmingham hip replacement, works at the same surgery and seems to be quite experienced (thousands of procedures done successfully!)

http://korhaz.drrose.hu/special-hip-prosthesis-operation-first-in-hungary?view=pdf

Then I posted what was happening on Facebook. I hadn’t wanted to tell anyone before. I suppose it felt as though it was a really big thing and I wanted to keep it to myself. I also wanted, if I was going to say anything, to be heard – and I wasn’t sure I would be and didn’t want to risk being ignored over something so important to me.

I was also aware I was in denial. It wasn’t really happening to me; it was ages away; if I buried my head in the sand it would go away …..

I wasn’t ignored, and lots of the feedback was about just how great it would be afterwards (well if I behaved myself and did my exercises anyway) and what good results people they knew had.

So my lions and tigers and bears ….

now look a bit more like this …..lion   tiger   teddy_bear