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Right knee pain - excruciating for 18 months, help!

Posted , 6 users are following.

christiesia
christiesia

Here's a quick summary: 

I am a 17 year old female, with pain in the right distal femoral metaphysis. I have stopped growing. 

I have excruciating pain, pain pills do not ease the pain (oxycodone, panadol, nurofen zavance, aspirin). 

I have trouble walking, bearing weight on the knee, and the pain is always worse at night. Pain is dull and aching in nature with severe onset of stabbing pain. 

And no, I have never injured my knee. 

I have had a cortisone injection with no changes. 

Hoping someone may help. It is ruining my life, and has resulted in many hospital visits.

**I have more medical images but cannot upload them due to size constriction. 

0 likes, 11 replies

11 Replies

  • jude48
    jude48 christiesia

    Posted

    Hi Chistiesia

    Try Synvsc injections the triple procedure is what I had over 6 weeks ago and had great paid relief after the 1st week and I was just about to have a TKR !!??

    it can last anything from 4 - 6 months and even longer subject to how carefull you are for example walking too far too soon and lifting weights etc.

    I paid £500 for the 3 injection treatment and will most probably have it again if and when the paid comes back

    anyway jhope this gimmer of hope will help you

    kind regards

    Simon Jude

    • christiesia
      christiesia jude48

      Posted

      Hello, thanks for your reply!

      I have had a cortisone injection, with absolute no changes, the injection was only experimental to rule out any inflammation within my knee joint, unfortunately I continue to experience this pain

  • jude48
    jude48 christiesia

    Posted

    Hi 

    please read my email again these  are two entirely different types of injection

    the coriisone is an anti inflamatory

    the synvisc injection if a partial cartilage replacement for when you have either some or no cartilage left in the knee joint which is the cause of most knee pain

    the simplist was forward is for  you just google the synvisc name and all will be revealed

    kind regards

    Simon  Jude

    • christiesia
      christiesia jude48

      Posted

      Thank you! I will look into this, however, all the cartilage in my knee has been cleared and is normal
  • Oldfatguy1
    Oldfatguy1 christiesia

    Posted

    Have they ever checked you for PVNS, a benign tumor that causes unbelievable pain. Usually there is swelling and bleeding internally. It can manifest in the teens but generally late 20's to early 50's. However; in my case not until mid 60's. The knees are the primary location but can hit any joint in the body. There is another location on this site that explains it in detail. Doesn't show in xrays or CT scans. Hope someone is able to pinpoint tour problem an quickly. You are awfully young to be going through this. Keep us advised. Good luck
    • christiesia
      christiesia Oldfatguy1

      Posted

      No swelling has been noticed on the knee. X-rays are normal, however, MRI, bone scan, SPECT/CT scans have been abnormal, yet the diagnosis I was given is not 100% and is still being debated.

      Thank you! It is difficult. I am about to begin my last year of high school in a few months, and I have been to hospital four times this year, the most recent was just a few days ago. It really is awful

    • Oldfatguy1
      Oldfatguy1 christiesia

      Posted

      As this reaches quite a broad area, which country are you receiving treatment? A few years ago a girl your age was being treated by a well known regional children's center, Childrens Mercy here in the US . The tumor had surfaced in several joints at different times. Very elusive indeed. I went to am ortho practice with 8 docs and a total of over 100 yes in practice and none of them has ever seen it. You might just want to throw it out to your doc.
    • christiesia
      christiesia Oldfatguy1

      Posted

      I am being treated in Adelaide, Australia. My surgeon is excellent. He practices for Australia's best voted private hospital, and he works at Adelaide's best and only primary children's hospital, as well as working in Glasgow as an ortho surgeon. He put me in a case study with 32 surgeons, and my diagnosis was still debatable, which is still upsetting me as the pain gets more and more severe.
    • Oldfatguy1
      Oldfatguy1 christiesia

      Posted

      My heart goes out to you. I understand unbearable knee pain. Toss out the PVNS and see what happens. Again, keep us advised. I know everyone on this blog wishes you speedy relief
  • rachel55534
    rachel55534 christiesia

    Posted

    I am so sorry you're going through this at such a young age! I can sympathize, as my knee problems started at 18 and have become a major focus of my every day life. Your symptoms sounds a lot like PVNS, with the exception of no swelling. Besides the pain, the swelling is the most noticeable symptoms. Did your scans show anything that looked like tumors, or large areas of black in the knee joint? I would suggest asking your surgeon to specifically look into PVNS. They might need to do a bioposy or arthroscopic surgery to confirm. PVNS can be very difficult to diagnose because it is relatively rare and the symptoms look like other diseases (mine took two years to diagnose and they initially told me I had early-onset arthritis). But when the surgeon is looking for it, it becomes more apparent. While this is a difficult disease to live with, especially so young, the good news is that just having a diagnosis will be a huge relief. And it is manageable with care. You will have to accept it as a a part of your life and realize that the doctors are always going to be the norm, but the good stretches are longer than the bad ones. I went 1 1/2 years between my first surgery and my recurrence, and while I know that I will need another one, my quality of life is still good enough to put it off for at least another year and probably longer. Keep hope and stay strong!
    • Oldfatguy1
      Oldfatguy1 rachel55534

      Posted

      I didn't have a sign of PVNS until it blew up and hemmoraged one afternoon. In three hours it went from normal to 4.5" inches bigger than the good leg.nasty looking mess. They had to put t me under 3 seperate times and take our about 200 ccs of blood each time each time, on 5 occasions in 3 months they used needle and syringe and took out 65-75 ccs. Almost a total of 1000 ccs in 4 months. Then 30 rounds of radiation and finally a synovectomy. It came back and caused the original TKR to break loose and then a revision (replacing the original). Unfortunately they can't get it all as its on a cluster of nerves and I might have lost the leg with a miscue. When  they tell you its a benign tumor it doesn't mean its harmless. I was much older older than most, 65, when it blew. It is generally considered a younger persons affliction but certainly worth mentioning to the docs

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