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Chronic painful Bone Marrow edema (BME) bilateral feet
Bones, Joints & Muscles | Last Active: Sep 9, 2023 | Replies (16)Comment receiving replies
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.
Replies to "I haven't gotten any answers yet for the edema. I'm hoping the orthopedic doc will have..."
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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.