Tag Archives: Girdlestone

Invalidated

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My story started when I had metal on metal Birmingham hip resurfacing, on the advice of my orthopaedic surgeon, left and right hip in 2013. They were supposed to be the best thing since sliced bread for younger people. Sportsmen and dancers were having them done. Indeed Craig Revel Horwood had the same procedure as me in the same week and was dancing across the Strictly stage five weeks later.

My left hip failed after two years (2015) with dislocations due to metalosis. After the second dislocation, I was told this was happening, mostly to women who had smaller prosthesis fitted. The metal from the prosthesis was wearing and breaking down tissue in the joint. My blood levels of cobalt, chromium and nickel were way above the threshold limits for immediate removal, altogether known as ALVAL (aseptic, lymphocyte-dominated vasculitis-associated lesion). The metallic particles create a very dangerous hypersensitivity reaction or abnormal immune response. ALVAL can cause inflammation, fluid, and psuedotumors (tumour-like lumps) to develop around the affected hip joint. As a result, critical blood vessels and muscles can be completely destroyed, resulting in grave disability or even death.

My hip was revised but became infected – twice. I had a year (2016) of intravenous antibiotics of last resort, followed by complete removal of the hip to save me, sinuses on my leg, continual draining of turbid fluid from my leg, or – once it finally healed – swelled up instead. It has been washed out, necrotic tissue, muscle and bone removed, partially revised twice more and I was left with no hip joint at all for twenty-two months, managing to get around the house hopping with a walking frame or in a wheelchair.

It was finally revised again in January this year (2018) and dislocated in March and May (and about ready to do so again) because of the metal fragments still in my tissues. I have lost my adductor muscle and much of my gluteus, other tissue and necrotic bone and my femur is spongy. The pseudotumours are in my groin and pushing out a difficult-to-dislocate hip through the pressure of the pseudotumour fluid build up. The turbid fluid drained from my hip each time is well over a litre and contains blood clots. My surgeon has now admitted defeat and referred me to a plastic surgeon and hip trauma specialist.

My next surgery will be the fourteenth on my left hip and sufficiently radical that I have been warned that I may bleed to death (exsanguination – the femoral artery is already compromised and bleeding due to pseudotumour), may injure my sciatic and femoral nerves so that I lose the use of my leg, and will need high dependency care. The complete removal of everything will be followed by at least four further clean outs over six months and intravenous antibiotics before an attempt is made to put in another hip. This is without consideration of the already failing right hip (fluid was seen around this hip in 2015 but was not as bad as the left). My BHRs were 40cm and 42cm, which have since been recalled by the large pharmaceutical company who make them.

I am exhausted, ill and depressed – as are my husband and learning disabled dependent son. Our lives have changed irrevocably and it is an ongoing nightmare from which we can never recover. I am disabled, have lost much of my own work and income, my husband has lost even more from his need to care for both me and our son and the over one hundred hospital visits so far in the past thirty-two months. 

We joined a group action against the pharmaceutical company with a large group of solicitors. The pharmaceutical company now threaten us with costs over a legal case they say we cannot win against them following a judgement in another larger case regarding metal on metal implants. I have now received a letter from my solicitor, following advice from QC, to say they are dropping the case against the pharmaceutical company regarding the faulty metal on metal hip appliances, even though the size of mine was deemed to have an over 25% rate  of early revision required in 2010, and if I pursue it alone I will have no insurance.

I am feeling rather invalidated for all our continuing struggles. Oh – and there are dire warnings about me not telling anyone!

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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.

 

 

 

 

 

I’m on my way ….

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At the end of April, exactly a year since my hip was removed completely, we moved our bedroom back upstairs. The week before, buoyed by being able to get over the front doorstep on my own, I decided to try the stairs. Now, with help from my husband, a crutch and the bannister, I get up the stairs and down again a couple of times a day. I can get into my own shower – bliss! – albeit with a shower stool and a bit of help.

The study, where we slept for the past year, on the other hand, is a tip – full of boxes of a year of – well we’ll pack it away and sort it sometime – stuff.

Now I’m back at the gym too. We went a couple of weeks ago just to see if it was possible. I take myself into the changing rooms and to the pool side for a swim in my wheelchair (Short story – I fell a couple of weeks ago while using crutches at home on wet ground. Typically there was no one around and I didn’t have my phone). I can get down the ladder into the pool and swim. Front crawl and back crawl only now. It was odd at first having one float leg that did nothing, but I’ve got the hang of tensing muscles to hold it in place now. Breast stroke isn’t possible with only one leg – I get nowhere!

In the gym itself we had an MOT. Outcome – couldn’t get much more unfit. We also had a PT session to show us the machines and build a programme. Treadmills, cross-trainers, bikes (even recumbent) and rowing machines are out, so my warm up is bouncing on a swiss ball with a pair of 1Kg weights in my hands. It’s hard work! This is followed by shoulder press and arm exercise machines and an abs trainer. 3 x 15 repeats. I did think I should be doing some leg exercise, but by the time I’ve been up and down my own stairs twice, then up and down the stairs at the gym, I reckon I’ve done more that enough of that!

I come home tired but happy. A man at the gym today said to me that it was good to see someone in my position doing something to keep fit. It’s more like getting fit again – and I miss not being able to do the bending and stretching of yoga and Pilates, but I reckon getting whatever parts of me I can fit again is a bonus. 1498494821_fitnes