Tag Archives: Surgery

Burnout

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I am a people pleaser. I don’t like confrontation and want to help as much as possible. I would like my epitaph to be – she did her best to help and tried to always see the best in everyone. I would like to be that good, though I know I’m not always and I catch myself not being the kind and generous person I want to be and try to change.

I see the anger that others feel about the pharmaceutical companies and solicitors and legal decisions. I am upset and disappointed that things have not turned out the way I hoped, and a bit resentful that my life has changed so much from what I feel at my age it should be – and that others feel they have to look after me. I grieve for the loss of the life I feel I could have had, but I don’t have that anger. I remember feeling anger a long time ago and making myself move away from that as it felt frightening and out of control – and I need control.

But now I have burned out. It took others to recognise it but mostly myself to admit to it. I always feel I have no right and there is always a bit more I could take on, and guilty that I might be putting on to others. But I wanted – needed – to run away. I couldn’t face emails or anything from work. I couldn’t answer the telephone or open letters. I couldn’t respond to emails and eventually each day only the absolute necessities got done. 

It is still a bit like that but I think the Sertraline has reduced the anxiety a bit. I still feel it and it gets to me, but it could be much worse. I can feel a bit more rational and make some basic decisions. I still feel the opportunity to buy our own house with parents – the type of house I never thought we could own, is a bit unreal. I can see my husband and son and parents in law there, but still not me. I feel I am dying and may never get there. I’m not scared as such but feel very sad that the promise of a home of my own or the surgery that might finally help me will come along. It all feels a long way away from me and while there is more manageable anxiety the dark thoughts still plague me – more so when my husband is feeling more psychologically able and productive and things are happening around me but not to me.

I read a blog this morning https://www.thecounsellorscafe.co.uk/single-post/2018/07/03/Is-your-childhood-the-cause-of-your-Burnout which says:

“People pleasers often come for therapy with burnout symptoms. An exploration of the early childhood of these clients can often find that they; grew up adopting the ‘peacemaker’ role within a turbulent household; grew up with strict parents with rules and regulations they had to follow regardless of their true feelings or beliefs; grew up with a parent with a mental health issue which meant they had to be ‘good’ and not create any trouble or added pressure for that parent, putting their own needs aside; or grew up with a sibling with a physical or developmental difficulty such as Asperger’s whose need for parental support was greater than the sibling without difficulties, hence the ‘well’ child grew up compliant recognising their needs were less important.

All these scenarios can contribute to a person’s inability to emotionally regulate themselves and a failure to attend to or even notice their own physical symptoms of burnout. The background and old dynamic of people whose needs were put aside can often repeat itself in the workplace as they put the emotions or needs of others before their own and fast-track themselves down the burnout road.”

This pretty much sums up my childhood and still I have those feelings of being less important, more able to manage alone and not being good enough. Even over the past few weeks while my husband has struggled too, I made him tell the GP at my appointment how he was feeling, and he dropped into a hole. Since then everyone has worried about him. My mum has just stayed here and at least twice has referred to how he is struggling or may be getting a bit better and commented that he might not manage to organise something but I can do that for him. Twice I’ve pointed out that actually, I’m on double the dose of Sertraline that he is, but then back down. It is ok for him to be struggling emotionally and psychologically, but not me, because I’m expected to just get on with it and look after others – like my mum does.

I have enough to look after – her as she continually battles with my alcoholic, selfish and hopeless brothers, who I still suspect of attention seeking as they have all their lives – as my dad did. So I feel I have to be there for her, even though she is many miles away. I have my husband, who looks after me so I feel guilty and feel I have to do as much as I can for him. This is not difficult as we are a team and I want to look after him, but I fear that he may one day have had enough. I have our disabled adult son to try to manage and keep calm. I have had to remove myself from people who have made me feel worse (in the main) because I simply haven’t the energy to manage their difficulties as well as my own. Difficult when my profession is all about helping and supporting other people, so that adds to the guilt trip.

I don’t know where I am going with this. Everything still feels hard but I don’t feel I can tell anyone and bring their mood down too. I feel I am not entitled to be like this. I feel the anxiety still sometimes becoming overwhelming and feel my feet flapping urgently under the water while I battle to stay calm for everyone else on the surface. I need some time alone to revive my energy levels, but struggle to find it – or have space where it is quiet and no one is talking or doing things. It may only get worse when the family living together gets bigger. But just now, just here, I can say how I feel. Would I still feel this way if the disastrous situations with my body had not happened? Who knows. It may be this in reality that has been part of the journey to this point, hard as it has been and still is, so I am trying to look at the bigger picture. But for now I just need peace, calm and to rest.

 

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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!

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.

 

 

 

 

 

Choosing a different Street

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Street

It has been some time since I last wrote, and much has happened in that time. I felt quite low after the dislocations in October 2015 and was waiting for some surgery to revise the failed hip and make life better again. Sadly this was not to be.

At the end of February 2016, almost a year to the day, and once my blood pressure reduced to an acceptable level, I had revision surgery on my left hip. Unfortunately the wound did not heal and 10 days later I was taken to hospital with a serious joint infection. I was in hospital almost a month with e coli mutations and on IV antibiotics through a PICC line. Low Hb meant doing further surgery was difficult.

It was April, and after a month of IV antibiotics at home and daily dressing changes for a copiously weeping wound with 4 sinuses, I went back into hospital for a Girdlestone procedure where the hip joint was removed completely. My surgeon put in a spacer to still give me a joint, but unfortunately this dislocated before I even got out of bed post x ray 48 hours later. Also, there were Gentomycin beads to try to target the infection. We looked forward to three months later when, hopefully, all would be well and a new joint put in.

In this time I kept quite optimistic and we even went as far as to book a holiday cottage which was wheelchair friendly. My bedroom had been moved downstairs to my office (The Growlery) and I had the company of my husband and mother-in-law for much of the late spring and early summer.

This also did not turn out as planned. Another sinus resurfaced and at the end of August I returned to hospital with a whole new set of infections in the joint – Klebsiela and Strep B. and another lengthy stay following surgery to remove the dislocated spacer and remaining beads – those that had not exploded all over our hall floor the night before, resulting in yet another trip in an ambulance. This time we had to cancel our holiday and I fell back into the black hole.

We hoped for three months of infection free and antibiotic free from the end of November, when the IV antibiotics finally stopped again and a promised date for surgery to put another new hip in and get mobile again. This is also not to be. I have little bone, tissue and no adductor muscle left after the many surgeries to clean out this joint. My surgeon is cautious at this stage about the increased risks of infection with no muscle protection, the difficulties of surgery and the possibilities of things going wrong at my (tender!!) age. He wants to do a biopsy to find out why fluid is yet again building up in that space, but won’t attempt a new joint again for at least another three months. This is the fourth lot of three months we are waiting.

Perhaps three months seems a sensible time for him to think we can wait. However, this time we are holding out little hope for anything being done anytime soon. Hopes being dashed so many times have left us all drained. So, with that in mind there are two choices. Go back down the same road and risk falling into the same black hole again, or choose a different road.

I think a new street, with different views is in order. Maybe it is a road I continue to take in a wheelchair. If so, then we need to find a house I can access on my own and not be confined to bedroom, living room and kitchen. I can’t even get in a shower without my husband – and that is in the downstairs guest room – and haven’t seen the upstairs of my own house since April last year. I need to live somewhere where I can get out on my own, with no steps and no need to be lifted in and out, so completely reliant again on my husband. He is at work 27 miles away full time, so a lot of time is spent alone. I have businesses I can partly run online, so will concentrate on those parts. I will try to write every day and maybe one day have the courage to write the books that I have thought of for so long. I will look for holiday cottages that have wheelchair access so we can go away together this year. It may not be Italy as we hoped and it may be booked the weekend we go – just in case! – but it is part of the plan.

So this new street has estate agent windows to look into, travel agents, books to read and research, people to talk to online and anything else that will help me lift my mood and look forward to my life as it is now.

The Owl and the Pussycat

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I’ve just heard today about a distant in law family member who had hip resurfacing 12 1/2 years ago and says it has been the best thing for him so far. I’ve also heard from another lady I contacted yesterday who had some problems with the muscle coming away from the bone post op and having to have further surgery – and found that she is finally improving too. All good news generally.

The resurfacing procedure will not take away the top of the femur just yet, so long as it is good condition. This will leave it intact for future revision and full replacement, which will hopefully be the case. However, I also heard today that anti-inflammatory tablets over a long period of time will soften the bone. In addition I know there is osteoporosis in my family in addition to the osteoarthritis I have apparently inherited so it is quite possible my surgeon is going to get in there and find my bones are falling to bits. Let’s hope not though!

I suppose this first hip will at least give us a very good idea about how the next op and recovery will go and also then I will find the knee replacement easier. I’m told there is a better success rate with hips and more obvious improvement altogether, and so more motivation to carry on. 

I’ve bought heat packs. I know summer is supposed to be coming up – but it’s cold, wet and windy again. My husband is going to have a fit when he realises the heat pack covers are an owl and a pussycat. I’ve also been looking at walking sticks – I quite like the green and silver with ivy growing up it. Difficult to make a wheel chair look pretty though – but also buying or borrowing one of these might be the only way of getting out of the house and avoiding cabin fever!

Measuring the height of furniture this weekend! I know how to have fun smiley wink

Sunshine on a rainy day

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I’ve found a website http://www.patient.co.uk/forums/discuss/browse/hip-replacement-1109There are loads of people there who have been in my position looking towards and working through their first hip replacement.

I must admit, I was a little doubtful about searching the internet for other’s stories in case I found things that were going to terrify rather than inspire. There are some stories that concern, and certainly my greatest fear just now is the new joint dislocating. There are also people talking about 12 week or more recovery rather than the 6 I’d expected, but I guess it is an ongoing thing. I am reading about major muscle being cut to do the operation, which i suppose I should have realised before, and how long it takes for that to heal. There is a lady who works with horses talking about how long it takes horses to heal after muscle, tendon and ligament damage, so I wonder why I would expect a human to take less time.

However, on the whole most experiences are very positive. Many people write about choosing resurfacing rather than replacement because of their age. The joint replacement will need to be replaced and so it is easier to replace a resurfaced hip rather than revise a replacement. It is apparently the same operation pretty much, without the head of femur as yet removed, just resized to fit a metal head and a metal cup fitted into the socket. A lot of these though have gone into surgery for resurfacing and come out with a complete replacement because, once work had begun, the bone crumbled anyway. I know I have been asked to consent to both and the decision will actually be made during surgery.

Most people say that, other than the night of surgery, they  no longer have any pain. They expect what they have had for so many years and find there is nothing. They are talking of a new lease of life, and being back and work and doing things they haven’t done in years.

So – some rays of sunshine, and that applies to today’s weather too! smiley happy