Chronic painful Bone Marrow edema (BME) bilateral feet

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.

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. 🙂

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.
~Brady

Hi @samiasibley, you must be at your wits end trying to find comfort for your daughter with all of this pain! With her latest MRI not showing any new tumors that is at least a shred of good news for her. But the edema sounds excruciating. I had bone pain with a medication I was on and wow, that was a level 15 on the pain scale from 1-10. I don’t wish that on anyone!

I found some interesting information on Bone Marrow Edema Syndrome from the National Institute of Health. From a quick scan of the article, there is thought to be some connection with BMES and a vitamin D deficiency, though the causes are sometimes difficult to identify. According to the article, there have been some treatments with Vit D and bone building medications. I wonder if your daughter’s diagnosis of Pten Hamartoma Tumor Syndrome might be complicating this as well. The article is worth reading.

Since you’re in the Phoenix area, have you considered requesting an appointment at the Mayo Clinic there? I’m providing you with the link to the Mayo home page. Just pop on to the site and you’ll see the phone number for the Phoenix campus. You can call and speak with a coordinator who will take your information and you should hear back from them within 3 business days. Your daughter doesn’t need a referral though sometimes it can help if a doctor makes the recommendation. But getting your daughter into a larger institution with a very deep bench of medical staff could greatly benefit her.

How old is your daughter?

That is super helpful! Right now we're being followed at Phoenix Children's Hospital because she is 12. We couldn't get into Ortho until Dec. I did do some reading on Bone Marrow Edema Syndrome and that seemed to be similar to her but it eventually resolved. She has complained of this pain for years. The first time she had an MRI was in 2019 and they noted the edema. The scan she had this month also noted edema. The focus at the moment is the mass on her thyroid but I'm concerned about the increase in pain she is having. The MRI technically only scanned her right leg from the knee down. I'm wondering if there could be a benign mass elsewhere on her bones causing all of this. With Pten (that is classified as a tumor suppressor disorder since her body can't stop the growth of masses) that she could possibly have some in her bones. They have only ever checked her kidney, thyroid, and dermatology check ups.
I'm trying to avoid just giving her pain meds. While I do give tylenol to help the symptoms I'm hoping for a resolution to the problem. It only seems to be getting worse.

That sweet little girl. It always breaks my heart to hear stories like this. Kids shouldn’t ever have face this type of problem. I’m with you, if she’s only had the scan on one leg from the knee down, as a mom, I’d be pushing to have both legs scanned. Does she have pain anywhere else besides her legs?
She’s had this for so many years and no answer. What have the doctors been saying about the edema. It’s good that she hasn’t developed tumors in her bones but the edema is certainly cause for concern.
What was the reason only her right leg was examined in the latest MRI?
December feels like such a long way off when your daughter is in pain. The appointment with an orthopedic doctor will be to check her legs?
Is she seeing a specialist for the mass on her thyroid? Have tests been run to see what is going on there?

I haven't gotten any answers yet for the edema. I'm hoping the orthopedic doc will have some in December. She's seeing a specialist for her thyroid and should be getting biopsies soon. Right now I'm on the hunt for other cases of such things in order to be able to find relief for her before December. She has some growths on the surface of her foot and the dermatologists wanted to be sure there weren't any AVMs (arteriovenous malformations) before they try and remove that on the surface. We're being followed by a ton of specialist-just nobody who can help us with her bones yet.

We do have some discussions in our forum regarding AVMs
Here’s a few links for you. Some of the conversations aren’t relatable to your daughter but you might find some valuable information.

Arteriovenous Malformation (AVM) Survivors and side effects
https://connect.mayoclinic.org/discussion/arteriovenous-malformation-avm-survivors-and-side-effects/

I didn’t find anything in the forum for your daughter’s Pten Hamartoma Tumor Syndrome.
But I had better luck finding conversations with Bone Marrow Edema Syndrome:
Suffering from RARE condition: Bone Marrow Edema Syndrome of ankle!
https://connect.mayoclinic.org/discussion/suffering-from-rare-condition-bone-marrow-edema-syndrome-of-ankle/

I sure hope you get some answers soon. When you’re ready, try the link I provide for Mayo. They are relentless when it comes to finding answers and offering hope. I’m a bit biased but I owe my life to the collaborative care I’ve received at the Mayo Clinic. It’s worth a call to see if your daughter could find her hope there.

I have had very painful BME in my R foot for 2.5 years. I had a "stressReaction" 12/20 after I woke up with severe pain in foot foot abruptly one AM. MRI showed diffuse BME throughout forefoot. I was in immobilized boot for 4 months and pain / BME has not resolved ever in 2.5 years. I went from
Full active life as personal trainer to sedentary disabled life.
I have been to every kind of specialist in Sacramento ,CA and no one has seen this prolonged BME AND no one knows how to treat it. No doctor or specialty knows a doctor to send me to. I have done day after day research and advocacy for myself and still Can not find treatmen or answers. I'm called UCSF ortho institute and they don't have treament nor information on where to get help.
Any help / info / experience in this regard would be greatly appreciated.

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