I hace AVN in both my femoral heads. Both femoral heads are about
30% dead. Mine was not caused by steroid usage but rather is a complication of my Crohn's disease. I had Crohn's for over 20 years before it was diagnosed and treated and have incurred lots of damage in my body because of it.
My AVN is "inactive." There has been no change in the necrotic areas since it was discovered in 2004. At that time I was having lots of hip pain and MRI revealed the AVN. Because of the extreme hip pain on the right side, a total hip replacement was scheduled. My GI believed that the pain was not really coming from the AVN. I had no pain on the left even though the damage was almost identical to the right side. He felt something else was going on and I was sent to the rheumy. He diagnosed me as HLA-B27 positive with spondyloarthropathy with active ensethopathy. The GI felt that Remicade would help with all the joint problems I was having. After the 3rd infusion, I no longer needed a walker or cane to walk, had almost zero pain on the right, and could bend and squat, something totally impossibe 6 weeks prior. I canceled the hip replacement.
I am not telling you all of this to suggest that your daughter would benefit from Remicade, rather so you will understand why I have not had treatment. It is very, very rare for someone to have AVN in the femurs and not need hip replacement within 2 years of diagnosis. Not one doctor can explain why the necrotic area has not caused bone collapse.
What stage is your daughter's AVN in the various places? The stage of the AVN really determines the treatment. It is possible to use conservative, non-surgical treatments in the early stages or try core decompressions to save the bone from collapse. In the later stages, joint replacement, grafting, cadaver bones, etc, are all procedures used.
The best advice I have is read, read, and research to learn all you can. Also, find an AVN specialist if you already haven't. I know that I located an AVN specialist at the major university teaching hospital in a large city an hour from me. Those that do the cutting edge procedures are relatively few. Most orthopods will say they care for AVN patients but they are not always as familiar with the latest procedures that tend to spare the bone and joints.
Please let your daughter know that my thoughts are with her as she deals with this latest challenge that comes with having IBD. You are a wonderful mom to be so proactive, advocating for your daughter.
Moderator Crohn's Disease Forum
CD, Ankylosing Spondylitis, small fiber peripheral neuropathy, avascular necrosis, diffuse connective tissue disease, Sjogren's Syndrome ?