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Suffering from RARE condition: Bone Marrow Edema Syndrome of ankle!

Posted by @contactbrady in Bones, Joints & Muscles, Jul 17, 2011

Would be beyond grateful for any insight or advice regarding BMES, as my research efforts have been largely fruitless. Very little is medically understood about the condition and I have been suffering with debilitating, severe pain in my left ankle for exactly two years. Hoping to avoid a core decompression surgery, but it may be necessary of enough damage has been done due that the fluid can cause (nerve damage, blood flow, bone collapse, etc.). Is there anyone out there who might shed some light on Bone Marrow Edema Syndrome? I'd travel anywhere to participate in any such study.

Tags: ankle pain, bmes, edema, core decompression


Posted by @rileygirl96, May 29, 2013

Hey I also have bone marrow edema syndrome. I see that its been a while since you posted this but I was hoping I could ket you know that you arent alone in this struggle. It is a physical and mental challenge every day but at some point you have to say "is it time to accept the fact that this isnt going away" well I struggle with that thought but in my opinion ive decided that its best to pretend its not there and to suck it up and dont get me wrong, it is really really hard, but that doest mean we cant beat this. I have faith that I will be healed on His perfect timing. I hope this helped a little bit. 🙂

Posted by Anonymous-95029454, Sep 29, 2013

Well hey there "riley girl". So sorry for such a late reply, however I'm certainly glad I checked this site out again to discover your kind message to me 🙂

First off, I sure hope you've managed to find some relief from this pesky affliction. Yes, I'm still living with - although it is substantially less severe than when I first posted on here. Perhaps that progress shall continue… TBD. I saw several baffled doc's I saw who all misdiagnosed me, but the seventh one concluded that it was the worst case of BMES he's ever seen - and the first time he'd seen it in person/outside of his study material. Yikes. But this may help explain why it's taking forever to subside.

I concur that timing is everything, and only God knows how much time this will take, but I remain faithful and hopeful. If not, I may try something called Iloprost that I uncovered in my exhaustive research about this frustratingly little understood, non-specific diagnosis.

I was curious; is your edema in the ankle as well, or the more "common" knee or hip location? If you'd like (just to compare notes, so to speak), I could email you a picture of the ankle when it was at its worst point. And should you happen to have a photo of yours, I'd be fascinated to see that as well.

Either way, I sincerely wish you all the best, sweet stranger! If inclined to stay in touch, my email addy is: '' ~Brady


Posted by @contactbrady, Sep 29, 2013


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