Still in pain after two years Knee Replacement

I had a total knee replacement almost two years ago and I have been ill ever since. When I filled in the hospital form I told them in the allergy section that I was allergic to Nickle, when I came around after the operation I started being sick but put it down to the anesthetic, I was still being sick and couldn't eat but they sent me home after keeping me in an extra day. Then I had an infection in the wound for three weeks and the nurse came in every other day to dress it. Since then I have lost nine stone in weight, can't stand the smell of food, I live on slim fast because it has all the vitamins and protein in it, my doctor said that it was ok and sandwiches. My leg is cool to the touch but feels on fire inside, with terrible pins and needles, I get terrible cold sweats, I have been so ill that I have been taken into hospital about fifteen times in the last two years, three times with pneumonia, the rest with being sick and in pain, my whole boy hurts and I now can't lift my arms, the hospital says my immune system is all over the place. I had patch tests in 2015 and they found I was highly allergic to Nickle and allergic to Colbalt, both ar in my knee.

On looking on the internet I found several cases of other people allergic to Nickle with the same symptoms and after having them replaced their symptoms have disappeared in a month. I went back to my surgeon and he has flatly refused to take mine out. I am on oramorph an zomorph which don't seem to help a lot, I spent quite a lot of time resting in between doing things around the house and being my husbands carer. My doctor says it needs to come out but I can't find any one to do it unless I go private and that will cost about £1700.500. I am just about at the end of my tether. I use to be so active. Now they say I need the right one done.

NO CHANCE ! Has any one else had this problem.

[earthwitch]

You might be best involving PALS with this. I'd start by getting hold of your notes and finding out exactly what type of replacement they used and what other hardware or glue they used (the brands and any other details of it). Also in the operation notes whether the surgeon noted any problems at the time. Then contacting the manufacturer to find out exactly what was in any of the things they put into your knee. If you find out that there was something with Nickel or Cobalt in, then I think the next step might have to be a lawyer. If it doesn't look like that was the problem, then get PALS to help you get a second opinion on whether you need revision surgery.

For what its worth though, knee replacements do quite often seem to cause problems afterwards (much more often than hip replacements), even when done properly

[Hidden in reply to earthwitch]

I meant to say there is both nickle and colbalt in the knee replacement.

[grace111]

this is absolutely a nightmare, when you told them that you were allergic to nickel did they put a band round your wrist, it should have been a red band saying that you were allergic.is there nickle in your knee replacment. if there is i would ask for your papers from the time you had the replacement and try to sue them as this is totally unaceptable and its horrible to hear how much you are suffering,im not long after an operation and i am in very bad pain and probably nothing as bad as you but it makes us realize more how dreadful pain is, if your allergic to it surely they must take it out if you have nickel in your knee replacement, they say they want to give you another knee replace ment have you asked them if there is nickel in that one, can you find out how the other people that you read about on the internet have had there knee replaced. i would try and get in touch with them and find out how they got the old one replaced. i will pray for you it might not sound much but the power of prayer is mighty. and please also pray for yourself and ask for help to get this knee replaced. im so sad to hear of your suffering. its horrific. it will probably cost them more to keep you on pain relief and going back and forward to hospital in the long run, may god help you dear. love grace. xoxoxo 🙏❤️

[Hidden in reply to grace111]

Thank you Grace. Yes I did wear a red band because of my allergy and wrote it on the admission form. When my son and I went to see the surgeon because I was so ill and my son asked what metal was in the knee replacement, he said nickle and cobalt and titanium, I said that I had put on the form that I was allergic to nickle, his answer was, " it won't be that making you ill. So my own doctor sent me for the patch tests and found I was also allergic to the cobalt as well.

So we went back to the surgeon and that is when he refused to replace it . I have also been to two other hospitals and they say they have never heard of nickle causing problems, I don't believe them. They only have to look on the internet at allergies from hip and knee replacements and revision surgery , where you can have ceramic or coated replacements but they are more expensive.There are stories especially in america where they do revision surgery and also patch test people before they operate.

I do hope you soon start to feel better.

[grace111 in reply to Hidden]

i feel sick reading this and its so wrong, there must be something you can do. fair enough they did not know that you were allergic to cobalt but they did know about the nickel. so thats two things in this knee replacement that your allergic to. have you ever heard of crowd funding? get your son to put your story on the internet. i'd even go to the news papers and see if you can get people to help you.im sure if they knew that agony that your suffering that they would help you. can you have a change of surgeon? i mean your doctor has even tested you and said that your allergic. i did pray for you last night as i was very upset to hear of this suffering that your going through its not as if you have an illness its because its been inflicted on you by the doctors and the surgeons that you trusted. please look into crowd funding, and also see a lawyer and get your notes as they have let you down badly. i will keep you in my prayers.get some of those stories in america where they do patch testing and and revision surgery and take them to the lawer with you. keep in touch and let me know how your getting on please. god bless you. love grace.🙏

[Hidden]

Thank you Grace. I have just had a letter from another hospital I went to, and had more x-rays it states that I have a possible lucency in the proximal tibia, I looked it up but I am not sure what it is, apparently it could be benign or malignant. I am going to my doctors on tuesday and he will explain it to me, it could be nothing at all.

Thank you for your prayers and I have taken on board everything you have said and I will look into it. x

[grace111 in reply to Hidden]

yes i have just looked it up myself and many of those lucency in the proximal tibia are said to mimick bone cancers and are not that. im pleased that your going to the doctors on tuesday and getting it explained. make sure that you understand everything that he says to you. can you take a family member with you. as sometimes its hard to take things in when they concern ourself as my mind often goes blank or i get an over load of information and i forget most of it. so good luck and i will be praying for you my dear.im watching this thread so if you post i will see it. as im feeling very concerned for you. all my love eve. i do hope that you get somewhere with this and get some real relief as pain is a terrible terrible thing. god bless you eve. love grace.🙏❤️

[grace111 in reply to Hidden]

hi eve74 how did you get on at the doctors on tuesday. i hope you got some good news. let me know if you want, love grace xoxoxo

[Hidden in reply to grace111]

Hello Grace, He dictated a letter while I was there because he is really cross with the way I have been messed about but he is leaving at the end of this month to go to New Zealand.

[Hidden in reply to Hidden]

Hello Grace I have been to the hospital again and they are going to give me an injection in the knee. I told them I have already had one and it didn't help but they are still not listening. I have been in touch with a solicitor and they have told me I have a very good case, so I am going ahead. Even if I only get enough to have it replaced privately.

[grace111 in reply to Hidden]

hello eve, i have been wondering how you were getting on as i'v not heard from you or seen any posts, im very pleased to hear what your solicitors said as they would not say that if it were not true as its very difficult to get a case against the NHS i have a friend who used to work with the NHS and she told me that. i told her about your case and she also said it sounded as if you had a case against them as you did have that band around your wrist that said that you were allergic to nickel. thats really absurd isnt it i mean your wearing a band round your writst and i had one of those bands on and every time i was given a medicine they would say have you any allergies and i would show them the band it said i was allergic to non specific anti inflamatorys. as i did get breathing problems when i took them. i cant get over that myself. i think you should get it done properly as even if you go private its the same docors would you believe.it would be fantastic if you could get a new knee made with the right materials. the whole thing is disgusting and telling you that they have never heard of nickel allergies, i mean thats calling you a liar into the bargain, oh my god i hope you get plenty for this as all the stress you'v gone through and the impudence that you have taken, almost being called a liar and a doctor telling you that it wont cause you that distrubance, what a cheek and now your trying to tell them that the injection they gave you on your knee did not help. and they'r still not listening, you wonder if they ever learn, at least its good news about the solicitor and i'd like you to keep in touch and let me know what is happening as im very interested to hear about this case as they way you have been treated is a disgrace.im hoping its all going to turn out well for you eve as you have suffered enought with this carry on. please keep in touch. im getting better its two months now since the operation i had and im able to get out to the shops and go up and down the stairs no problem, its great to hear from you eve im very pleased to hear from you, all the best love grace xoxoxo👍

[Hidden in reply to grace111]

Hello Grace, I had a phone call yesterday from the hospital, they want me in monday 19th at 7.30 am for an injection in my knee. Had a bit of luck found some paper work from the hospital that original put the knee replacement in, it was the discharge form after they gave me the first injection, it states on it allergies NICKLE and Codeine, so they can hardly deny it. Also The infection I had after the operation was a " Heavy Growth of Enterococcus faecalis." Which is caused by fecal matter so some one must have germs on their hands when changing my dressings. My Dr gave me Amoxicillin and the nurse came each day for ten days to change my dressing. Speak to you soon, Take care.x

[grace111 in reply to Hidden]

thats great news eve you must not loose that paperwork. can you make a copy of it? this fantastic. i was wondering how you were. iv been taken up with a good friend on this forum who was unwell and my mind has been on that for days however all went so well and im feeling relieved. how are you in yourself? you must be over the moon coming across that paperwork. that is going to say and do it all for you. i know you said that the injection did not help you the last time. its a bit early in the morning to get you in for an injection, 7.30am goodness me. and that infection you got oh my god. i mean in a hospital of all places to. im glad for you eve. thanks for letting me know of this good news. i hope that maybe somehow the injection will maybe help this time. fingers crossed. love grace xoxoxo

[Hidden in reply to grace111]

Thank you Grace I will let you know how I get on. Yvonne xo

[grace111]

great.xoxoxo

[Hidden]

Hello Grace, I went to the hospital on monday, for what I thought was a steroid or cortisone injection, instead they tried to aspirate my knee but couldn't get anything out of it to test. It was so painful they had to give me three local anesthetics, since tuesday I have hardly been able to walk.

Bit of good news, one of the doctors from my surgery phoned me today to ask why a solicitor had written to them asking for my medical records, so I explained it to him and he said he certainly would give permission for them to be sent straight away. I haven't seen this doctor before as he is quite new. I think he thought I as maybe suing the practice. xox

[grace111 in reply to Hidden]

sorry im so late to reply eve iv been offline for a few days and came back on last night but didnt see this post. as iv been down myself. what a carry on, you would think that they would make it clear what they were going to do before you came for your appointment, and they have made it worse to. what a carry on, thats good that the solicitor is getting your medical records and things are moving forward with this, i hope that your getting pain relief for your knee eve as this is just a scandal what they have done to you. i used to think that people in the medical profession and those with jobs with such responsibility were people that we could have faith in. iv now found out for myself with being in hospital, that they are just as incompetant as someone who works in a factory. i really did trust them and now i know better. i had to stay on top of them all the time when i was in the hospital. they may be overworked but thats not our fault.keep your chin up eve. once again im sorry i never saw your post sooner, lots of love sent to you. grace xoxoxo🤗

[Hidden in reply to grace111]

Thank you Grace, I hope you are feeling a bit better, sometimes I wonder how long I can go on like this , been in bed for two days again and that's not me, I am a doer always been on the go. Now days I can't concentrate on anything even the TV. The fatigue I feel I can't explain, I am absolutely drained all the time. Listen to me going on, I am sure there are a lot of people worse off with really serious illnesses, I have got to get a grip of myself. Normally I am a really strong person.

Take care of yourself Grace speak to you soon. xoxox

[grace111 in reply to Hidden]

it doesnt matter if there are people worse than you or me. its how we are affected and its a horrible feeling when you have no energy and cant even watch the tv then that must be bad as at least if you can watch tv you get a bit of escape from your own thoughts and worries. are you getting some sleep. its horrible feeling drained. its got to come to an end sometime. it will be that hip with the stuff your allergic to thats making you feel ill. the sooner thats taken out the better it will be for you. its a disgrace what happened to you especially when your wearing a wrist band telling them what your allergic too. keep you chin up eve. thats what im trying to do. its not easy. but it has to come to an end soon and your solicitor will have your medical recorods and will be working on it. and from what i'v heard it should not take long for them to come to a determination.also they will have to put it right if they are found to be in the wrong so you should not have to go private and pay for it. as if they are found to be negiligent they will have to sort it. and make it safe for your body. keep me posted eve. all the best darling. i will be thinking about you. love grace xoxo 🤗

[Hidden in reply to grace111]

Hello Grace, went to the hospital yesterday took my husband with me, saw a lovely registra, went through the whole story again. Went for x-rays on my right hip and pelvis. because my right foot points to two o'clock since my knee op the other one is perfectly straight.

Went back and saw the registra and he asked me what I would like done, I told him I would like a replacement, he said right I will talk to the surgeon, because even if it isn't the nickle and colbolt, it is in your mind and your leg isn't getting any better. He went to talk to the surgeon came back and said I would have to have some bone scans and blood tests over the next six weeks and if they couldn't find anything causing how I feel. THEY WILL REPLACE THE KNEE. I felt a ton weight had been taken off my shoulders.

Whilst I was having my x-rays my husband talked to the registra and told him how ill I had been and how many times I had been in hospital and that he thought on several occasions I wasn't going to make it. I don't know if I told you he had a brain scan nine months ago and they told us he had the beginings of vascular dementia. He is not too bad at the moment I do have to repeat things several times, he can still hold a conservation he just can't remember appointments, which I write on the calendar but he forgets to look at it, because it is easier to ask me.

I am rambling again but it is good news hopefully. Take care Grace speak to you soon. xoxo.

[grace111 in reply to Hidden]

hi eve. i will speak to you through a private message. as i have things i want to say. also im going to my doctor and want to get ready. so i will message you in a bit later in the day. love grace xoxox

[mollyandmaisie in reply to Hidden]

ive been following your story with interest as i am also allergic to nickel and told the surgeon before i had my first knee replacement. ive now had both knees done 8 months ago since my last one and im still in pain, cant walk and the knees buckle constantly. it feels like my legs are being stung by a thousand bees! i called the hospital yesterday and asked if there was nickel in my knees and he said yes...... I TOLD HIM BEFORE THE OP I WAS HIGHLY ALLERGIC TO NICKEL. im now going to see him on monday for blood tests... i will insist he take them out. wish me luck...

[grace111 in reply to mollyandmaisie]

hi there i dont know what has happend to eve iv not heard from her for a while looks like she has left the forum.

[mollyandmaisie in reply to grace111]

ok grace, just would love to know how she went on

[grace111 in reply to mollyandmaisie]

yes we were in contact a lot and she wore a wrist tag saying she was allergic to nickel and they still put that knee with nikel in. also it was later found out that she was allergic to something else in the knee, she made a complaint and got a solicitor and they were going to give her another operation, i know quite a lot about her situation but cant give out private details as we did follow each other and messaged each other. what helped her was the fact that she wore the wrist thing stating her allergy and they still went ahead with the knee with it in. i still have many of her private messges and i will have a look and see if there is anything helpful i can tell you. she has definitly left the forum thats why her messages are stated as hidden as her name. love grace xoxoxo

[mollyandmaisie in reply to grace111]

ok thanks. i told my consultant i had an allergy to nickel, and still put the cobalt and nickel inplant in. im calling him tomorrow as he wants to do the blood tests now.

[grace111 in reply to mollyandmaisie]

i mean its unbelievable that eve wore a wrist band stating that she was allergic to nickel and they still put the knee it. its shocking. let hope you get this resolved and they replace the knee.. they must have other ones as eve was getting hers relplaced the last time i spoke to her. please keep in touch and let me know how you get on. all the best. love grace xoxo

[Gringogirl in reply to Hidden]

What is a registra please?

[lenny42]

yes i had knee replacent july 4 2013 and i have not been able to walk since iwas lold had been damaged and cant be repaired iwas told get used to it///// now 4 years on and n.h.s not interested why ...

[mollyandmaisie]

Yes. I'm going through the exact same thing! I had both knees replaced 2 yrs ago and now I can't walk. Stand still. I am in constant pain it's unbearable! I was much better with the arthritic knees now my life is ruined. Even in bed and at rest the pain never goes away. I've been back to the consultant and he just said he will refer me to the pain clinic. I told him before my operations i had a severe allergy to nickel but he said it's rare that it would effect me. Now I said could this be down to my allergy to nickel and he says no he thinks it's probably crps. I'm going to fight this as i Know it's the nickel allergy i just don't know where to go to get help. Could you keep me informed of how you get on?

[DANCEBUNNY]

Go to PALS, the patient liaison & complaint service. Hope it helps