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Chronic painful Bone Marrow edema (BME) bilateral feet

Bones, Joints & Muscles | Last Active: Sep 9, 2023 | Replies (16)
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@contactbrady

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.

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Replies to "Would be beyond grateful for any insight or advice regarding BMES, as my research efforts have..."
rileygirl96 | @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. 🙂

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JJJ | @julesj | May 14, 2023

Hi, I have had chronic severe BME diffuse started R foot /L now as well.
With severe pain I woke up 2.5 years ago one AM and was diagnosed with stress fracture/severed diffuse BME in R midfoot. We immobilized my R foot for 4 mos. No resolution of pain or BME on follow up MRI to this day. Now 14 weeks ago my calcaneus spontaneously stress fractured with severe BME now in hind foot. 3 weeks later the L calcaneus stress fractures more severe BME i can't help but think the strain/
Pressure from having the BME gave me stress fracture potential .
I have gone from
Active personal trainer with full hiking, walking everywhere , weight lifting to disabled sedentary life due to this condition .No specialist has seen this chronic severe BME or knows who to send me to. I've been to multiple specialists in Sacramento. I called UCSF ortho and they don't even know how to treat it. The core decompression looks to be iffy results and mine is so diffusely throughout both feet now that's not viable. Honestly from my research core decompression seems like an iffy solution with very mixed results for anyone .
I have researched (as I'm Sure you have )every corner of every study online.
Iloprost is not available as IV infusion in US unless it's for pulmonary HTN. Any other info you have discovered ?
Thanks

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