Dealing with chronic pain
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Ive been told Im too young for op I need im 48

eledrialeledrial Member Posts: 4 Listener
For the last three years Ive been what seems like battling the health system, I have Osteoarthritis which is especially effecting my knees. I was meant to have an op over three years ago to a tear in my knee but after months of waiting two weeks before the op I was told it has torn too much and couldnt be operated on. At the time I was still able to put some weight on my left leg and all on my right leg. I was devestated as I had arranged with my work to take off the time for recovery and expected all to be finished by the march of that year. I was in so much pain by then I had to give up work, I was a self employed childminder. I had managed to hide the pain for so long but my knee had no given in on me not holding any weight and constant chronich pain. In the May I was transfered to another consultant who was supposed to now recommend the next steps for me.(by this time my life was completly upside down, I couldnt function with all the meds I was on for pain and inflamation, id fall asleep regularly, miss conversations, forget where I am. And financial calculation where impossible plus depression and many more to numerous to name). The consultant was very kind to me he did test after test xray, scans various, blood tests and physio assessments etc. after the months these took it was late august and my next consultation I was told that my knees (both) needed replacing I was shocked as one seemed fine compared to the one which kept me in agony, my spine also was very painful by now. After the shock I said well if thats what needs doing, I just want the pain gone and my life back(I was very active with rescue dogs, driving was no longer possible, my job, functioning in my life had mostly gone, I had to have someone with me 24 7.)
The bombshell then landed I was too young to have the operation! no matter how much I questioned the decision on this and other occasions the answer was the same. The last consultant I saw actually said it was because of budgetting!! How could this be? after being told I was too young, too fat (I lost weight for the operation) and now the budget of the hospital. He then said all I could do is control the pain until I was able to have the op. Its is now 2 years later, I have not had one day without pain, I have followed instructions from doctors, physios, pain experts but still no releif!
I know this is a bit long winded but the back situation has to be told.

I am 48 years old, have no job as im unable to function yet, no longer have any freedom trapped in my house unless someone takes me out (murderers and rapists get more freedom than I do)  in constant agony.
Why am I left in this situation, how can it be right that I loose my life when something can be done. I dont know where to go from here im exhausted with the whole thing people treat me as if im stupid just because it takes a while to process information (because of the drugs they have given me)    Please Please if you have managed to read through my ramblings I need advice now I dont know how long I can go on.

Replies

  • tommtomm Member Posts: 227 Pioneering
    Maybe moving to a different health authority area will be of a benefit to you, I'm 52 and have stage 4 OA changes in one knee and moderate  O/A changes in the other knee, I want to delay the only available option TKR for as long as possible, because i simply do not to have to repeat this later on, as they only last 10-15yrs though my pain is not constant at this point in time ,
  • loopytloopyt Member Posts: 80 Courageous
    Hi eledrial,  this is an awful situation for you, it is hard to believe that the powers that cannot see that by offering you the necessary treatment not only would it be life changing, it would actually be better in the long term for the budget! Have you had a long chat with your GP? It may be worth asking if you can be referred via choose and book and request an appointment with a different hospital. I can fully understand that you are not in a good place or feel strong enough for a battle but sometimes it is what is needed. If you have a good sympathetic MP it may be worth sending them an email asking if they can help. I was once refused an operation because I was ot working at the time! After asking for my care to be transerred I did receive the necessary treatment. It shouldn't be a fight ut sadly it often is. Without trying to pry could you afford to see a consultant privately? Many also work under the NHS so it just saves time. I do hope you are able to get some help because the pain is bad enough but strong medication just causes other problems.
    Loopy
  • loopytloopyt Member Posts: 80 Courageous
    That should have said 'powers that be'! 
  • loopytloopyt Member Posts: 80 Courageous
    Please understand I am not suggesting paying privately to jump the queues, just in order to gain another opinion in a shorter time
  • jackykinsjackykins Member Posts: 16 Connected
    i had 2 hip replacements at 49 and one at 50 so they are talking rubbish go to a different health authority hope you get  help 
  • gillian29gillian29 Member Posts: 36 Courageous
    I’m new on here,hope I’m doing this right.Ive been on easa for the last 3 years,I’ve severe oesteoarthritis,and rheumatoid arthritis,both my knees are terrible,but I had one total knee replacement,that was done when I was 51,I’m 54 now and desperately need the other one done,but they are trying to put me off from having the other done,not sure why,maybe because the Nhs is short of finding.Im like you I’m on oramorph and zoromorph and tramadol to help with the pain,but it makes me feel as though I’m living in a fog,and just so drowsy all the time,like you I can’t carry on like this much longer,I can’t belueve I was working 3 years ago,hardly get out,sorry for rambling on but I know what your going through
  • eledrialeledrial Member Posts: 4 Listener
    Many thanks for your replys unfortunately I have had long talk with all my health professionals who I've met. The only one saying they won't do it are the surgeons consultants all others can not see why as my life could be so much better with the op. I have had to move as can't use stairs any longer, I don't think that different regions should have different rules on this. There is nothing in writing saying it isn't possible and majority have been amazed I've not had new knees yet. I'm so so tired, is it negligence on the hospitals part? I haven't any money to go private that went with my job. Thank you all anyway I was hoping for a legal solution to make them at least give me an age. I may be dead in two weeks so all these years suffering would be pointless, I want my mobility back now as I'm young  enough to use new knees not when I'm 80. Noons will give me an age.
  • loopytloopyt Member Posts: 80 Courageous
    Hi again, when I was refused an operation because I wasn't  in work at the time I did seek legal advice and was successful in my action against the nhs but that was sad as it was the consultant who should have been punished. There are lots of solicitors who offer free advice for 30 minutes so if you look on Google for specialists in clinical negligence you may find one local to you. Maybe just a stern solicitors letter to the hospital in charge of your care will do the trick. I understand it must seem such a battle but it will be worth it. My niece had polio as a child and suffered severe hip pain for years and was told she was too young for a replacement but they did finally give her a new hip in her early forties. Good luck x
  • eledrialeledrial Member Posts: 4 Listener
    Thank you loopyt so there may be help out there for me, I was told in my 30's that id need a new hip by the age of 50, it seems to have gone to my knees instead now. I shall look up these specialists thank you.

  • sdoc94sdoc94 Member Posts: 140 Pioneering
    Hi all.

    I was diagnosed with arthritis at the age of 20, in my hips. One hip deteriorated so quickly that I had it replaced at the age of 21. Over time it has spread to my spine, both knees, both hips, shoulders, arms, neck, jaw the list goes on. 

    They delayed my hip replacement until I could not stand up straight or walk more than a few metres. They all told me that they did this to prolong the lifespan of the new joints. I'm glad they did to be honest.

    My knees are constantly swollen like bowling balls and I cannot bear the pain a lot of the time. But I have had family members who received knee replacements and I am not in any rush to get one! I have been told I will be at least 50 before my knees get any surgery performed on them - I am now 23. You're not alone, I have 27 years minimum to wait.

    But at your age I would not imagine you have much longer to wait - I would write letters to your consultants. I did when I couldn't bear the pain in my hip anymore - I received a cancellation for my hip replacement a few months later.

    Life changing!
    Shady.
  • jackykinsjackykins Member Posts: 16 Connected
    i had one hip replaced at 49 and the other at 50 aafter being told I had sciatica for 5 years 
    then when finally they sent me for x-ray was asked how I walked there was nothing left of one of them 

  • sdoc94sdoc94 Member Posts: 140 Pioneering
    They waited until it was so bad that in order to bend my knee up to my chest during surgery (while I was unconscious) they had to dislocated and break my hip - there was no more joint space the two joints were locked.
    Shady.
  • ClaireSaulClaireSaul Volunteer community adviser Posts: 92 Pioneering
    Hi All - apologies to be late to the chat, but I have had a flare in pain, my condition(Ehlers DanlosSyndrome), passed out & dislocated both shoulders over the weekend....just want to say that i will be back and just working my way through chronic pain posts!

    Claire
    Claire Saul
    Chronic Pain Advisor
    Scope
    [email protected]
    scope.org.uk
  • jackykinsjackykins Member Posts: 16 Connected
    hope you feel better soon x

  • loopytloopyt Member Posts: 80 Courageous
    Hi Claire, how awful, hope you feel some improvement soon.x
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