Rare conditions synovial osteochondromatosis.

ITSALLLIES
ITSALLLIES Online Community Member Posts: 44 Connected
Not sure if this is in the right area of the forum here?
Just discovered today I have a rare condition among other more popular ones.
Anyone else have this? I have a condition called synovial osteochondromatosis. 
Is it as randomly disabling as it is for you as it it me from one day to the next. Massive fluctuations in a materr of seconds or meters for instance
From what I understand it can be caused by injury or something that is already present prior to injury.
Am I right in believing what an ankle surgeon stated that I already had this before I fell from a ladder.
I got 12kpounds 3 years ago for my fall the dwp took 10k then declared me fit for work.
But I've been disabled by this painful condition 6 years now and it's not getting any easier.

Comments

  • chiarieds
    chiarieds Online Community Member Posts: 16,790 Championing
    I would believe your ankle surgeon. It sounds like you have primary synovial osteochondromatosis the cause of which is often unknown, whereas the secondary type of this is usually due to osteoarthrosis.
    As you fell from a ladder, I well imagine you had X-rays/MRI & the synovial chondromatosis often would show up with this as small fragments/loose bodies that form from synovial tissue (which surrounds joints & provides lubrication to help protect them). These are different in size & proliferation to 2ndary chondromatosis.
    If you were suffering pain prior to your fall, such symptoms would then also agree with your consultant's diagnosis together with any radiographic findings.
  • ITSALLLIES
    ITSALLLIES Online Community Member Posts: 44 Connected
    Thanks for the response.
    I had no symptoms prior to the fall.

  • chiarieds
    chiarieds Online Community Member Posts: 16,790 Championing
    Then it was likely what's called an 'incidental' finding following your fall, i.e. it showed up on X-ray/MRIs that were done because of your fall. You could always discuss this further with your GP or ankle consultant.
  • ITSALLLIES
    ITSALLLIES Online Community Member Posts: 44 Connected
    Yes that's right I recall this being mentioned. I really don't know what to say to them anymore. Some things I've reported have been miss reported in my medical file. Ie not referencing correct areas at the time of complaint. Loosing my ability to claiming compensation for these injuries.
    Except I'm severely impaced by multiple issues it's not just the ankles, I suspect the same in many other areas. Pain medication does very little, forced rests seems best 👌 
    I'm a little worried about bone cancer now as my symptoms are similar.

    My dad died of blood cancer possibly related to working in contaminated ground in Swansea - I worked there too 😟.!!!
  • ITSALLLIES
    ITSALLLIES Online Community Member Posts: 44 Connected
    edited July 2023
    I've a strange feeling this diagnosis is incorrect.
    Something tells me the ankle surgeon is confused about this and has mistakenly diagnosed this condition.
    I hadnt mentioned idI worked in compressed air upto 1.6 bar of pressure. Pressure that strangely at one point was leaking out of the road surface some meters above the tunnel likely decompressing itself in a sense.
    I suffered a perforated eardrum being decompressed onetime.
    Also I've just read that Osteonecrosis and Osteochondrosis
    I think maybe I. Possibly have a condition known as hypobaric osteonecrosis.

    Osteonecrosis and osteochondrosis are two radiographically similar disorders associated with multiple etiologies.

    I've a strange feeling that it's actually bone pain I'm suffering from due to injuries falling from a ladder in 2017 and has brought this condition to the surface, and still I'm found fit for work! 

    I guess I should get back in touch with the ankle surgeon.
  • ITSALLLIES
    ITSALLLIES Online Community Member Posts: 44 Connected
    edited July 2023
    Thanks for the response.
    I had no symptoms prior to the fall.

    Not in the ankles or knees, I did however develope back pain from working in compressed air.
  • chiarieds
    chiarieds Online Community Member Posts: 16,790 Championing
    edited July 2023
    You had me confused, as I'd never heard of hypobaric osteonecrosis. Perhaps you mean dysbaric osteonecrosis?
    You can also get osteonecrosis/avascular necrosis following trauma, yet you only mention problems with back pain which you feel is due to previously working in compressed air (which could also be coincidental, & was prior to your fall).
    As you say, your ankle surgeon is the one to discuss this further with you.
    Just to add osteochondrosis, which usually occurs in children, & affects their bones as they're growing, should not be confused with synovial osteochondromatosis.
  • ITSALLLIES
    ITSALLLIES Online Community Member Posts: 44 Connected
    dysbaric osteonecrosis! 
    Yes that's what I meant I was reading some very old literature.
    I must have miss read something in the previous comment.
    Especially when the similar names popped up and I confused them as being possibly missdiagnosis deu to those being similar In nature

    I guess the question now is are there similaritys to my diagnosis and dysbaric osteonecrosis are these things connected the more i think about it, the symptoms are end of bone pains and also joint muscle pains.
    The more I do the more sore the bones are.
  • chiarieds
    chiarieds Online Community Member Posts: 16,790 Championing
    As you've worked out yourself, your ankle specialist is the best one to look at any other differential diagnoses helped by any imaging which I presume they'll have following your fall or more recently.
    Yes it's a minefield when so much medical terminology is spelt fairly similarly, which led you a bit astray! So many symtoms could be put down to many disorders, as is often the case, so you need your specialist's input, or have a chat with your GP.