bone marrow edema

[StellaPFM]

Hi Everyone

Has anyone had a bone marrow edema? I have it in one foot and ankle. I went to an orthopedic surgeon, because I had pain walking. A MRT was take of the area and the result was mentioned above. My foot will be put in removable walking cast for a while, that is supposed to be the almost only treatment. I was told it will take several months to heal out, The cause is not known , as the Hematologist told me. It might come from MPN? Or just coincidence? I was recently re-diagnosed with ET not prefibrotic MPN.

I have no arthritis etc. Bone are in good shape.

Any pointers to the subject?

Thank you for considering.

[akonline]

Hi Stella, this is so interesting! I've had MF (post-ET) for 15 years and currently have an edema in my left upper arm. So painful (especially at night), and painkillers don't really work. The frustrating thing is that the orthopaedic surgeon says that I need to treat my MF, however my haematologist thinks this is a matter for the orthopaedic guy! Anyway, I have had lots of treatments in the last 6 months - shock wave therapy, matrix rhythm therapy, cortisone injections, physio. Apparently something like Iloprost or decompression (drill into the bone) is supposed to help but none of my doctors want to do it, and I'm not keen on the risks and side effects. If you can tolerate Tramadol this is the best painkiller I have tried. Good luck!

[StellaPFM in reply to akonline]

Thanks Akonline

I will keep you posted on what therapy I will go through. Since yesterday I was put in a removable walking cast, that I can take off at night. I still have some freedom in movement so I don’t have to take extra blood thinners. Let’s see how this works. Next 4 weeks will tell.

[Plate]

This sounds very interesting! Thank you for your story and keep us informed. That could be what my problem is. I see the Orthopaedist next week.

[StellaPFM in reply to Plate]

The only way to detect it, is with an MRI exam. Might want to ask about it.

[Plate]

Thanks, I will.