Surgery for synovial chondromatosis anyone? - NRAS

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Surgery for synovial chondromatosis anyone?

acousmetre profile image
12 Replies

Hello!

I have psoriatic spondylitis / arthritis. In one elbow I have synovial chondromatosis with lots of calcified bodies floating around in the joint causing pain and limited movement. There's some disagreement with the doctors at the hospital as to whether it's primary chondromatosis (a very rare disease) or secondary due to inflammation caused by the spondylitis (sounds more likely to me).

The elbow is currently relatively pain-free due to a recent infusion of steroids but extension of the arm is still limited (although better). I see a private rheumatologist on occasions when I need, and this doctor recommends against surgery due to what he says is a painful process and one that involves a long recuperation time. Whereas the hospital rheumatologist says I can't keep having infusions and it's never going to get better without the removal of the many floating bodies. I see the hospital orthopaedic surgeon next week.

Has anyone here had this type of surgery and could you please tell me a little about the experience?

Cheers, all the best,

PS. I'm being treated with methotrexate (20mg pw) and golimumab. I'm also 58, so plenty of time left for tennis, etc.

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12 Replies
RosieA profile image
RosieA

I am afraid that I can not answer your question but would me mind me asking you a question related to your calcified deposits. I have UCTD and one day I suddenly couldn't weight bear on my wrist. Very painful between the pads of my palm. Resting on the inner side of the hand is sore. X ray showed calcified deposit - told by locum rheumatologist that this was probably caused by ageing and asked no more about the pain. Concurrently, have also experienced intense pain in the shoulder - lasted about 3 -4 weeks which has now left some restricted or painful movement. Elbow, pain from bending to straightening. No imaging has been taken of either the shoulder or elbow. Does this pain etc sound similar to your experience. Not quite sure whether to press for more support or accept I'm past it at 63!!

So sorry you have two opinions on the surgery - I've had three for my pain - ageing, tendonitis/bursitis, fibromyalgia! None of which have helped and just leaves our minds swimming in the mud. The orthopaedic surgeon, will be best placed to discuss what is needed from his perspective and I am sure will not recommend a procedure unnecessarily. Wishing you all the best.

helixhelix profile image
helixhelix in reply to RosieA

I have repeated bouts of calcific tendonitis. Wrist, lower and upper arms, shoulders etc. Extremely painful!

My rheumotogist checks by ultrasound and for the accessible ones has injected them with steroid, which so far has worked. For my shoulders the only option was to wait - once the deposits are reabsorbed they no longer hurt. Generally takes between 3 and 6 months 😟

No one has been able to tell me why this is happening repeatedly. And while she says that people with RA have the tendency it apparently is not caused by the RA. It’ horrid.

acousmetre profile image
acousmetre in reply to helixhelix

helixhelix Gosh, I can imagine. Some relief I guess, that the deposits are reabsorbed. All these autoimmune diseases are so mysterious aren't they? Even to the experts. I have capsulitis and tendinitis in the shoulder. One rheumatologist told be me it had nothing to do with the disease yet my current one says, yes it does.

I hope you find a better treatment.

RosieA profile image
RosieA in reply to helixhelix

Hi Helixhelix, long time no chat. I must admit that I now mainly post on Lupus UK as my diagnosis is Lupus Lite UCTD with some inflammatory arthritis but some things like this don't necessarily resonate. Are you still in France?

I had read about calcific tendonitis and it seemed to fit the bill, especially the intense pain followed by some relief. Sadly, the last person I saw was fixated on Fibromyalgia - did the assessment- I didn't pass threshold. All other explanations I offered- e.g. intercostal rib pain a direct result of the flu jab, as discovered over three successive years were ignored. Hip bursitis diagnosed two years ago but still ignored in favour of Fibro!!! Minimal examination of shoulder, non of wrist. I find it difficult that no imaging was done of the shoulder even though the pain was intense. I am now left with some movements which will trigger an 'ouch' moment. The wrist remains very painful. Exhaustive process just to get someone to listen carefully and not try to fit your symptoms into their pet area of study.

I shall pursue the possibility of a steroid injection but maybe the shoulder boat has sailed. Does untreated calcific tendonitis potentially lead to permanent damage do you know!

Many thanks, as always, for your thoughtful responses. x

acousmetre profile image
acousmetre in reply to RosieA

Hi RosieA . I don't know anything about UCTD but I see that it involves joint pain and I imagine, where there's pain, there's a possibility of damage. I know that secondary synovial chondromatosis is common to both RA and psoriatic arthritis (PsA). In my understanding of it, small pieces of bone or cartilage break off into the joint as a consequence of the disease and that the synovial membrane and synovial fluid, which it produces, have a nutritive effect on them, causing them to grow. The membrane also may be inflamed. These loose objects are typically of different sizes and shapes. This contrasts with primary synovial chondromatosis wherein the origin of the loose of bodies is the membrane itself. In the disease the membrane produces many tiny benign tumours which break off into the synovial joint fluid and are again, like in the the secondary form, fed by the membrane causing them to grow. These objects, which do not start off as calcified however may later become so, tend to be of the same size and shape.

In the CT of my elbow I have more than a dozen calcified loose bodies some almost a centimetre in size all with different shapes. An MRI of the elbow with contrast also showed many more non-calcified bodies more characteristic of the primary condition and in addition to an inflamed synovial membrane. That's why there's some disagreement as to what type of disease I have (both?!).

The treatment for primary synovial chondromatosis is to remove part or the entire synovial membrane in addition to the floating bodies. The membrane does grow back however the recuperation process is slow (and I understand painful) and the surgery with subsequent physiotherapy does not guarantee full movement and may even make things worse due to scaring as consequence of the surgery. There's also a significant risk that the new membrane will again start producing the tumours.

In the secondary form, I don't know if the membrane is removed or not but certainly the floating bodies are. The idea is that medication for RA or PsA will keep the joint from further destruction after the surgery.

In my case, the only thing that has stopped the inflammation has been the steroid shots....

I have problems in other joints but fortunately no loose bodies found.

I too am very sceptical about surgery. I've recently had 3 unsuccessful surgeries for hernia and I'm due for another in October. This time I'm going to pay for a private surgeon who will perform robotic surgery (the robot also charges! :-) ). I think this time it will finally work.

Like you, my elbow cause pain when extended and closed and in my case, particularly at the two extreme positions. I started noticing the problem when going for long walks with the arm extended. It would get rigid in the extended position and I'd need to massage it and use my other arm to get it moving again. This was perhaps 9 years ago when it started and the degree of extension and closure has got progressively worse - although improves with steroids.

All the very best with your treatments!

RosieA profile image
RosieA in reply to acousmetre

Thank you. I do so hope that you get the answers you need to resolve this. Surgery or not can sometimes a real balancing act. If you feel able perhaps you could let us know what happens at your appointment. Wishing you all the best with it all.

Sheila_G profile image
Sheila_G

I'm sorry I can't help you but I hope your conultation next week is positive and gives you some hope for an easier life.

acousmetre profile image
acousmetre in reply to Sheila_G

Thanks Sheila_G . Yes, I hope so too. My preoccupation with surgeons is that they see the resolution of all problems through the lens of all those sharp pointy objects they use! :-)

PSAWarrior28 profile image
PSAWarrior28

I had synovitis in my right elbow. It was assumed to be tennis elbow but as the pain continued, I finally saw a rheumatologist privately and got a diagnosis.

The surgery was ok but recovery was brutal. Over 10 years after surgery, I don't have full range of movement in this arm. It was at this point that I got psoriatic arthritis.

Good luck with your decision.

acousmetre profile image
acousmetre in reply to PSAWarrior28

Hi   PSAWarrior28 . Did you have loose bodies in the joint as well? Was it a full synovectomy?

Edit: Do you still have pain in the joint?

PSAWarrior28 profile image
PSAWarrior28 in reply to acousmetre

Yes I had full synovectomy. As far as I'm aware, there was no loose bodies in the joint. I have lost some range of movement in the joint and sometimes in a flare will get numbness in my hand. Hope that helps 🙏🏾

Garnacha profile image
Garnacha

My diagnosis of psoriatic arthritis started in my left elbow, left hamstring & right shoulder, steroids helped but not in my hamstring. When they've done ultrasounds on my elbow & shoulder they said I have spurs / calcification.

I've recently had surgery on my shoulder & tbh wish I hadn't, it's more painful now than before 🙄

I have found some relief with medication for psa & am currently taking etoricoxib, hydroxychloroquine, sulfasalazine, gabapentin, I was taking lefluminode but have terrible neuropathy & high blood pressure which can be caused by it, the rheumatologist doesn't seem particularly bothered so I stopped it about 6 weeks ago, however, I've just had to start taking blood pressure tablets today 😔

I had tried methotrexate but couldn't stand the side effects anymore after 18 months despite trying injections so it was replaced with sulfasalazine which seems much better.

Good luck with whatever you decide 😘

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