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.