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Please help- arthritis in kneecaps at 42!

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CharlieP
CharlieP

Please can someone offer me some advice. My husband is only 42 and is suffering badly from arthritis in his kneecaps. He has seen several doctors and specialists and they have told him nothing can be done for him- they won't operate because they say it won't help and won't give him a knee replacement because he is too young. My husband can't sleep at nights because of the pain and is taking multiple painkillers just to get through each day. It is affecting his quality of life already and will only get worse. The doctor has told him in a few years he will be unable to work. We are both devastated.

Basically what I am asking is is there anywhere we can go where we can pay for a knee replacement or some treatment which will alleviate his pain? Surely he cannot just be expected to suffer for 20 years until they deem him old enough for a replacement?

please help.

 

0 likes, 31 replies

31 Replies

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  • sparkle1
    sparkle1 CharlieP

    Posted

    just had a look - The irish times had an article earlier this year on stem cells - Galway - look on internet. 

    but if you go to arthritis UK you shoudl find the ist of participating hospitals 

    If you simply type in OA Knees Stem Cells trial or similar loads and oads of articles will come up to help you 

    Your surgeon maybe protecting you - but i'd go see one of the guys working on this new stuff and see if e.g. you dont have a knee replacement for 2 years you;d be better off long term etc. i.e. find out more facts first and when armed with lots more information, make a decision on what to do.  

    • CharlieP
      CharlieP sparkle1

      Posted

      Thank you so much for all your help. We have an 18 month old son and it's heartbreaking that my husband can't play with him or kick a ball with him.

      At least there is some hope for us

    • cheryl90571
      cheryl90571 sparkle1

      Posted

      This is incredible news! Imagine how things will change when this gets going!

      Wonderful progress!

  • elizabeth20203
    elizabeth20203 CharlieP

    Posted

    Hello CharlieP,  I am sorry your husband is suffering Arthritis and i know how debilitating this can be. I am 59 and have had my left knee replaced twice. Thou I had Septic arthritis from aged 11 and this developed into Osteo arthritis. My first knee was done aged 39 and 2nd time aged 52. I am due to see the consultant for my right knee and have already being told that i may need a partial knee replacement.I also suffer Arthritis in my spine since aged 40. I do think it can depend on what area you are in. Physiotherapist told me it's best to get things sorted before thay get too bad as it will cause more problems in the future. My therory is we don't know how long each of us is going to live, so why not have the operation now while we can still enjoy our lives. Thou this doesn't work like this with the NHS. Have you asked for a second opionion with a specilist? Can i ask what pain killers is he on, as there are some better ones now than the older drugs. I must admit my second knee replacement was not as successful as the first one and i suffer terrible nerve pain and knee locking, and they do not last as long. I am 6 years into my second one now. I dread to think what will happen when that one wears. However the younger the patient the less problems and mobility is good. I had no pain after the first one. I know some specialists won't operate till 60 plus because if the patient is younger then they will need a second one done, which are not as successful, thou that doesn't help us that are in constant pain. I hope he can find someone that will be more understanding and offer knee replacements. I have heard about stem cell treatment thou don't know much about this or where it is offered. I am going to ask about an alternative for my right knee rather than go down the operation route if i can, only because i have suffered most of my life and have had numerous operations as a child, as well as tibia and fibia straightening and deformity. My second one was replaced with a broken leg. Without knee replacements i would of being in a wheelchair 20years ago. There must be something they can do for your husband.

    Elizabeth.

  • sparkle1
    sparkle1 CharlieP

    Posted

    Hey just had a look on internet for you.... massive European trial on stem cells about to kick off. It is being co-ordinated by the University in Galway but covers most of Europe. Seriously, check it out on interenet - there are tons of articles. Go see them - they are looking for volunteers - i would not necessarily volunteer but at least go see the guys in Ireland as they are co-ordinating it and would know if your hubbie's OA woudl be a prime candidate ultiamtely for either this at some future stage or a replacement - they must be pretty good if they have been chosen to co-ordinate across Europe on this massive clinical trial.  Its being funded by European Commission and is about to start... you will be abel to find it by typing in a few key words - its such a pain that on this site you cant refer people to the pages which woudl help them but you will be able to find easily enough. 
  • sparkle1
    sparkle1 CharlieP

    Posted

    Here are a few links - hopefully they wont be deleted as they will help you find someone who can help you but seriously, there are dozens of articles you can find by typing in the key words... 

    http://cordis.europa.eu/news/rcn/124035_en.html

    http://www.irishtimes.com/news/ireland/irish-news/stem-cell-trials-on-tackling-osteoarthritis-may-lead-to-treatment-in-five-years-1.1738023

    http://www.uhs.nhs.uk/Research/Taking-part-in-trials-or-research/Getting-involved/Featured-study-Knee-and-hip-repair-in-the-ABICUS-/Featured-study-Knee-and-hip-repair-in-the-ABICUS-trial.aspx

    http://www.dailymail.co.uk/health/article-2984062/End-knee-pain-stem-cells-hip-Cocktail-cells-halt-damage-caused-osteoarthritis.html

    if you want something mre learned, type in Google Scholar and then type in OA knee stem cells and tons of 'real' medical journal stuff will pop up which will lead you to someone in ireland who has made this their life's work - suggest you go visit them ASAP.... 

     

  • bexnkev
    bexnkev CharlieP

    Posted

    Hi There

    I am in pretty much the same position as your husband (I am 41 and wheelchair bound as a result). Sadly, I haven't found any answers either but I just wanted to wish you all the best in getting your sorted ☺ Wish I could offer more help x

    Best wishes

    Bex

    • cheryl90571
      cheryl90571 bexnkev

      Posted

      I'm sorry to hear that you haven't found any solutions to your situation.

      One day a cure will be found, and that will be a happy day for all those who come after us.

      I hope that you are not in too much pain and wish the best for you.

    • bexnkev
      bexnkev cheryl90571

      Posted

      Hi Cheryl

      My pain is sort of managed by Buprenorphine patches. I refuse to increase my dose any further as it is playing havoc with my cognitive function! Dazed and confused among other things. It's a balance between bearing the pain and being able to function day to day ☺

      I have weight issues which I am in the process of addressing ... Fingers crossed, once I have sorted out my weight then I will hopefully be able to go for surgery.

      Thank you for your kind wishes ☺

    • cheryl90571
      cheryl90571 bexnkev

      Posted

      Pain is SUCH a challenging thing! I'm glad to hear that you are achieving some relief with the PAIN patches.

      I know what you mean about feeling "dazed and confused"! I was given Percocet with KNEE #1 back in June. All was going fine UNTIL I realized I was dropping things, running into tables, falling asleep in the middle of sentences (reported to me by my son, my husband, and my GOOD friend on THREE different occasions!), and eventually ITCHING like crazy!

      No more Percocet for ME!

      That left me with just Extra Strength Tylenol because my surgeon "doesn't like to overmedicate". I eventually finished my blood thinner shots and could get back to Ibuprofen which works better.

      Always a challenge!

      If your knees are shot as mine were, I really only had surgery as an option. My X-RAYS were tilty toward the inside of each KNEE. I had been walking BONE-ON-BONE on about an inch of bone on both knees for several years.

      I hadn't gone back for about four years because neither PT or shots worked. Arthroscopic surgery only can do so much. I was FRUSTRATED!

      Getting my two TKRs was my best decision ever. I am still in pain, of course, it being just a week and a half since my second surgery. I DO have strength and great balance, though, even this early in the game.

      Doing PT on knee#1 helped strengthen knee#2 because I did all the nonweight bearing exercises and stretches with BOTH LEGS. I am grateful that I toughed it out with Knee#2. It was really painful prior to my surgery.

      Wishing you fast weight loss so you can get those knees fixed. Then you can catch up with anything you may have missed!

      You go, go, go!😊

    • bexnkev
      bexnkev cheryl90571

      Posted

      All the best with your recovery Cheryl ☺

      Both of my knees are pretty much bone on bone on the inside of the knees so surgery is pretty much my only option (eventually). It's a long battle but one I am determined to win.

      I expect to be dismissed by my employer in the near future as I have been off work for many months but I can't even be worried about that as I absolutely have to concentrate on my health issues ☺ I have the most amazing support network which makes it easier to cope, my hubby has been my rock ☺ Best wishes are sent your way ☺

    • cheryl90571
      cheryl90571 bexnkev

      Posted

      It is SO GREAT to hear that your support system is good. When health issues hit and you find that things you once did are no longer doable or are very, very difficult, it is of GREAT COMFORT to have people around who can be there to help.

      You are right to focus on your health issues. At one point I had almost given up --thinking that I just would always feel crummy and that I would always be the one lagging behind. I knew I needed to keep trying and find out how I could get myself fixed.

      There were many hurdles to go over because insurance companies want to make sure that surgery is the only option. I wasted several years feeling sorry for myself and thinking I just had so much more to prove before I could be a candidate for surgery.

      I was pleasantly surprised on my visit in early June (my first in four years!) that I had already gone WAAAAY past arthroscopy and was ready for BOTH KNEES to be replaced.

      I scheduled surgery before I left the office that day!

      Your health is more important than any job. I am excited that you are working hard to meet you goals and will soon be ready to do what needs to be done to improve your quality of life and eliminate much of your pain.

      A big hello to your husband and to the other members of your support system! They will be there for you and will be thrilled to watch you become the person you can be-- without pain and doing things you want to do.

      Please keep in touch!

    • bexnkev
      bexnkev cheryl90571

      Posted

      It's great to hear how far you have come ☺ I am guessing you are in the states (when you talk insurance), I am in the UK ... but still have issues trying to get help as our NHS do have to prove that this is the best option for you (or funding is withheld). It's a case of jumping through the correct hoops but I am finally getting somewhere. I am awaiting psychology input in order to move forward with my weight so I am now walking the long road instead of just looking at it ☺That's definite progress ☺

      I am about to pm you as I would like to keep in touch ☺

    • cheryl90571
      cheryl90571 bexnkev

      Posted

      Yes, we live in northern Ohio, USA, near Lake Erie.

      Your NHS sounds like our insurance companies who send out large manuals of what is covered and what is not. Jumping through hoops is a part of OUR daily exercise here as well!

      Will be looking forward to hearing from you!☺

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