Category Archives: Tramadol

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.

 

 

 

 

 

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The end of the Tramadol tale – I hope!

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I have had no Tramadol for 9 days. Last time I was splitting one capsule into two and taking one half in the afternoon and one half at night. It wasn’t pleasant but I knew by now what the alternative was, and I couldn’t face it again just then. I knew I had to get through a working week. On Friday 6th I took 1/2 capsule before seeing an afternoon client. However, at bedtime I decided it was all or nothing now. I had a weekend with my husband around, so if I was ill then so be it. I couldn’t reduce the individual doses any more. 

Typically I didn’t sleep well on the Friday night, but it seems that was something I know just have to get used to anyway. Saturday and Sunday I spent under blankets on the sofa, chilled and shivering but sweating – I wish I’d remembered heat packs before now because regular top ups of heat into my back made a big difference to my comfort. I ached everywhere. I can honestly say the pain of withdrawal was worse than the pain I was taking the Tramadol for in the first place. I was more used to that pain and it was more predictable and less wearing than the aches. However, I have since discovered aches and pains the Tramadol was masking, even if it was apparently doing nothing for the sharp pain in my lower back and left hip that is stopping me walking far. I had diarrhoea again, very bloated and gassy, nausea and acidic.

Gradually over the week I have felt better. I have found I am exhausted by 4:00pm, but this may have absolutely nothing to do with it. I am not sleeping well because, other than Natrasleep with valerian, I have nothing to make me sleep now and I am sore and hurting, so can’t get comfortable. I’m getting roughly a 1 hour cycle (should be 90 minutes) of dozing between waking and needing to move. I can relax – that is well practised – but unfortunately as soon as I do I start to hurt in my upper back and muscles start to become agitated. The feeling of agitation generally has been frustrating and I spent a good part of Wednesday in tears. 

Things have picked up since though and I think we’re there now. I no longer take Tramadol. I can go and see a new doctor on Tuesday and say I only take Ibuprofen and Paracetamol and this is where I am with pain and movement – not something hidden by Tramadol. I have been swimming as usual and keeping up my yoga and Pilates with my physio exercises. I am personally shocked at how weak I have become over the past 18 months. My muscles and tendons, despite regular exercise, are tight and guarding and exercise stretches that used to be easy for me are now worryingly difficult. However, you get nothing without trying and I’ll carry on. It has occurred to me though that, while surgeons say it is ok to have so many joints replaced so close together, the reality is that you feel as though you have been in a car crash. And in many ways, you might as well have been!

I am still having problems sleeping, but I am waking in the morning feeling brighter than I did regardless of that. My joints and muscles are getting stronger again – I can lift my left leg against gravity 10 x 3 times (with just some pain and effort!) – a few weeks ago I couldn’t do it at all. I am in pain, but I am looking for a different way of managing it. I will not be going back onto Tramadol.

Onwards and Upwards 🙂

Tramadol – the ongoing saga

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When I wrote a couple of days ago, I received some really helpful advice from a person who read the post. It seems from this, and other things I’ve picked up online, that coming off Tramadol is neither straightforward nor easy. 

Certainly it is unpleasant. Yesterday I chickened out. I set myself 3 days for each decrease and it was going to be by a whole capsule. I did feel much better yesterday I must say. I was quite chipper all day until about 4:30 – 7 hours after my previous dose. I’d slept quite well with only one episode of discomfort and agitation – although admittedly it was about 2 hours that I was awake trying to get back to sleep. Again, it was roughly the time my body had metabolised the drug and was asking for more. By 7:30pm I was very pleased to be able to take another and could’t face going all evening and night without.

The person who responded to my last post suggested halving and then quartering the dose. Good advice! Unfortunately not so easy with capsules. I did consider asking the GP for tablets, but decided against it – hoping I’d be off these before the script was even signed and ready. I had a reasonable night last night and this morning also felt ok and not so desperate for Tramadol. I am in quite a lot of pain, but possibly no more than usual. I came down to breakfast – usually I have to take the Tramadol 1/2 hour before getting up just to get out of bed. It was hard work but fine. I felt sufficiently ok to cut the caps in half and give a half dose a go. The rest of the powder is sitting in a spoon for later (possibly for taking with a bit of jam!!) – hopefully this evening and not this afternoon. 

I have got through the morning, and I had client work. It kept me occupied although I confess to being a bit distracted. It feels as though all my nerves are back on the outside of my body and I’m freezing cold and shivery. I also notice, as I did previously, that when I need (!!) a dose of Tramadol my temperature seems to go up and I feel flu like symptoms. However, balanced with the constant tiredness of living on Tramadol, perhaps that’s not so bad, and I know now what to expect and that it will eventually go away. 

So – 2 1/2 doses today, tomorrow and Sunday – maybe Monday too – and then we’ll try reducing again.

The best thing the person who wrote to me said though was a very helpful reminder. The difference between addiction and physical dependency is the addition of psychology. Remembering this is a physical dependency over which I have control makes a lot of difference.