Osteonecrosis/ Avascular necrosis

Posted by coramayo @coramayo, Oct 13, 2022

I have Osteonecrosis/ Avascular necrosis with unknown etiology. I have had 4 joints collapse , both shoulders and. Hips. Currently in early stages in both knees and possibly other joints.
Looking for a knowledgeable doctor to manage medication treatment like possibly blood thinners and cholesterol reduction medication to help blood to bones. I’m in New York area.
Any recommendations?

Interested in more discussions like this? Go to the Bones, Joints & Muscles Support Group.

coramayo | @coramayo | Nov 9, 2022

Has anyone had core decompression for hips / knees? I’m looking for a doctor to do my knees

Colleen Young, Connect Director | @colleenyoung | Nov 10, 2022

In reply to @coramayo "Has anyone had core decompression for hips / knees? I’m looking for a doctor to do..." + (show)

Hi @coramayo, I moved your latest post about AVN to the original discussion you started on the topic to keep all your posts and connections in one place.

I’m tagging members @billv123 @sma1952 @sebley12 @guener on this message to see if they may have more information to offer based on their experience with AVN.

If you would like to find out more about your options at Mayo Clinic, you can request to speak with an appointment coordinator using the online form here: https://mayoclinic.in/1mtmR63

coramayo | @coramayo | Nov 10, 2022

In reply to @colleenyoung "Hi @coramayo, I moved your latest post about AVN to the original discussion you started on..." + (show)

I have called several times Mayo to find a doctor. Intake coordinators are at a loss when I say Avascular necrosis/ Osteonecrosis. First one said no doctor has that listed. Second and third time I called they were going to research it and call me back Never got called back. Very frustrating getting past the front line.

Colleen Young, Connect Director | @colleenyoung | Nov 11, 2022

In reply to @coramayo "I have called several times Mayo to find a doctor. Intake coordinators are at a loss..." + (show)

That is frustrating. Perhaps this listing of the doctors and departments at Mayo Clinic that treat AVN would help:
- Avascular necrosis (osteonecrosis) > Doctors & Departments at Mayo Clinic https://www.mayoclinic.org/diseases-conditions/avascular-necrosis/doctors-departments/ddc-20369864

coramayo | @coramayo | Nov 11, 2022

In reply to @colleenyoung "That is frustrating. Perhaps this listing of the doctors and departments at Mayo Clinic that treat..." + (show)

Thank you I will try calling them and looking them up

JSV0052 | @sjv1968 | Feb 25, 2023

In reply to @coramayo "I have called several times Mayo to find a doctor. Intake coordinators are at a loss..." + (show)

I have it in my 2nd metatarsal and told them where it was so I got into a orthopedic foot doctor at Mayo. Tell them the location in your body and start from there.

davidkn | @davidkn | Jan 30 3:41pm

In reply to @coramayo "Has anyone experienced Osteonecrosis/ avascular necrosis (AVN) in multiple joints post covid. I’m 2 years post..." + (show)

Hello,

I just found this forum, but when I saw your post even though it is old I had to reply. I have the exact same thing had Covid twice no steroids and about 6 months after the last time with Covid 15 months after first time with Covid I was diagnosed with AVN in both hips. Having second hip replaced in Feb 24. Having mri of knees, feet, and ankles due to lots of pain.

coramayo | @coramayo | Jan 31 8:44pm

In reply to @davidkn "Hello, I just found this forum, but when I saw your post even though it is..." + (show)

I’m taking blood thinners and hoping that prevents the progression. I’m on a Facebook group for Avascular necrosis where there are many others with AVN in multiple joints , some have also gotten it post covid. Initially I found the Facebook group very helpful for gathering information