Osteochromatosis: NO CURE??

[echelon6]

I'm very sad and very worried. I'm only 22, female, and I've recently been diagnosed with osteochromatosis in my right shoulder (actually the shoulder specialist is 95% sure and I will need to get an MRI / CT scan to confirm). I've been perfectly healthy up till now, and started noticing the pain in the last 3-4 months, which increased rapidly.

I'm very worried that this will be ruinous to my future

For the past 3 months my right arm mobility has decreased drastically. I'm very scared that this disease is also present in other joints of my body, e.g. other shoulder, knee, hip etc

The doctor has indicated that I may need to have surgery every 2-3 years for the rest of my life to remove the bone growths, and even still, I will most likely have crippling arthritis in my shoulder by my late 30s (worst case) or mid 40s (expected scenario)

I would like some further opinions from this community. I hail from Australia so I'm wondering whether the US has some opinions on this disease?

Specifically I want to know:
1) is there a high likelihood that this is present in other joints of my body? (I didn't get xrays of other joints yet, no pain, no symptoms from other joints yet)
2) will I have cripplingly painful arthritis by my 40s?
3) is there absolutely no cure / hope for me?

[PamelaGartland]

Also, thus usually only hits one joint of the body and is very rare to occur elsewhere. It is more common in men and between 20-50 years of age. If the surgeon removes the area that is producing these cartilage pieces (usually in the synovial membrane) then you shouldn't produce more pieces.

[txsilver]

New leaf, I could not have said it better myself.  Thank you for your insight and reminder we always have hope.

[NewLeaf]

There is no always in medecine.  Just because you have a diagnosis doesn't mean you will be the worst case senario, just as you may not be the normal case senario for that diagnosis.

There is always life and hope despite pain, surgeries and even, yes I will say it, disability.

I was diagnosed with RA in my early 20's. I am now in my mid fifties. Three major joint replacements later any what many people call deformities, I  am still happy to be here despite pain and changed physical abilities. People get frightened of what they don't know and understand. They are also frightened of pain. Learn what you can about this diagnosis and condition then do your best to take care of your body in terms of nutrition first, then your mental and spirit components. You may have a diagnosis but you can hedge your bets and maybe not become a worst case but a best case senario.

Remember there is no always in medecine. Miracles can and do happen everyday.

Wishing you only the best of everything.

[PamelaGartland]

I had knee surgery for this condition 2015. I was told and did some research and found that the chance of reoccurance is as little as 15%-25%. With PT you should get mobility back and be able to do what you love to do. If it reoccures you deal with it. Many get arthritis in a surgical area but press on, you may not until you're 60! I'm 53 and hiked in Yosemite and Alaska's mountain ranges last year! Achy but still ski and do other things I love to do. Make sure your surgeon has experience and knowledge of this somewhat rare condition. Best of luck and God bless!

[floridagirl11]

Hello,

This is the first time I have heard of this condition but I just wanted to let you know how sorry I am to hear about what you are going though and I hope you find the answers you are looking for.