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AVN or osteonecrosis sufferers please reply

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Posted 3/26/2008 2:33 PM (GMT 0)
Hi,

I haven't posted here in a long time.  My daughter suffered from ulcerative colitis so I used to frequent that forum.  I thought arthritis might be the best place to start since this disease will eventually lead to arthritic joints.  She was recently diagnosed with avascular necrosis (aka osteonecrosis) in both knees and right elbow (and possibly left ankle) probably due to steroid use.  She used them for approx 4 1/2 months to bring her out of control colitis in check, but it didn't work and had a collectomy and jpouch surgery in Nov 06. 

We are all devastated by this recent diagnosis and am looking for any information that can lead to proper treatment.  I would like to hear from anyone who has it and what their treatment course has been, and also if anyone has tried stem cell treatment.  I'm panicky because I feel like time is of the essence before she becomes to far advanced for prevention of bone collapse.  She's already had some narrowing in her knee joints and her right elbow is slightly deformed and lacks range of motion.  If there's any information that you can pass on, I'd be so very grateful!

Thank you!

Posted 3/26/2008 11:26 PM (GMT 0)
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.
Posted 3/27/2008 4:24 PM (GMT 0)

Hi Ides,

Thanks so much for replying, and for the opportunity to talk with you!  I am encouraged by your AVN's "inactivity."  I believe from the things I've read, none of the doctors have classified it yet, but that she's probably in Stage 2.  The xrays are showing some slight flattening of the rounded areas of the bones, and her knees grind and click something aweful when she stands and sits.  Right now, the AVN in her right elbow is causing the most trouble.  She's taking Tramadol for the pain since narcotics are too strong; she needs to be able to get through her classes, and she can't take NSAID's.  What types of pain relievers have helped you that don't cause too many side affects, but still relieve the pain.  As her Mom, what really tears me up is the idea that she'll suffer so much pain from this. 

Hmmm, the Remicade use possibly coinciding with the inactivity is something I'll discuss with her doctor. So, how much time has passed since you had the Remicade and what made the GI doc believe that the pain was coming from elsewhere if you were having to use cane etc to walk with?   Have you heard of anyone with AVN using stem cells from their own body for treatment?

On an encouraging note, I did find a specialist who wants us to get additional MRI's and Xrays of her shoulders and hips and to send a package of all of the images and her medical history to him for review.  Unfortunately we live in the south and he's in the northeast coast...but I'm willing to climb mountains for her if necessary...just wish he were closer. 

I have read, read, read and can almost quote word for word what the recommended procedures are for this.  This doctor that I found uses joint preservation techniques rather than waiting for the bone to collapse and I feel like she'll be in good hands as this is a very reputable doctor with impeccable credentials...I'm encouraged by that.  Of course, I wish like mad that this weren't happening to her, but it is and I will do whatever it takes to try to set her up for the best possible outcome. 

I do appreciate your kind words and for just being there to talk to.  Thanks again! 

Posted 3/29/2008 6:36 PM (GMT 0)
Ides, you are a lifesaver! Welcome to the forum Buckeye!
Posted 4/1/2008 1:08 AM (GMT 0)
Thanks Ducky! :)
Posted 3/30/2012 2:15 AM (GMT 0)
I have Multiple Sclerosis and was treated with steroids. I got bilateral AVN in my distal femurs as a result. I got the MS in1986 and the AVN in 1993. The AVN in my knees does not involve the joint so it has been somewhat unusual. I've had 12 core decompressions on my right leg. This has been done to relieve the insidious pain. Not that successful. The first and only core was performed on my left leg and that totally worked! No pain there. The MS has taken a "backseat" to the chronic pain in my right leg-as I am looking into everything that would help. Good luck and doing core's early may help halt her pain?Patches 1
Posted 8/15/2012 5:23 PM (GMT 0)
my 14yr old daughter has been suffering with AVN of the knee for 2 yrs. SHe already had 2 surgeries to try getting the blood flow to the dead area of bone, nothing has worked and she is in constant pain. Can anyone refer me to a specialist who will treat her with results? We live in PA, but are willing to travel. It is so hard to see her in daily pain.
Posted 10/22/2012 3:48 PM (GMT 0)
My mom is 55 and is suffering from AVN in both of her knees and her ankle. How do you know it's "inactive"?
Posted 10/22/2012 11:55 PM (GMT 0)
From the NIAMS site:
"The amount of disability that results from osteonecrosis depends on what part of the bone is affected, how large an area is involved, and how effectively the bone rebuilds itself. Normally, bone continuously breaks down and rebuilds— old bone is replaced with new bone. This process, which takes place after an injury as well as during normal growth, keeps the skeleton strong and helps it to maintain a balance of minerals. In the course of osteonecrosis, however, the healing process is usually ineffective and the bone tissues break down faster than the body can repair them. If left untreated, the disease progresses, the bone collapses, and the joint surface breaks down, leading to pain and arthritis."

When I stated mine AVN was "inactive" I probably should have said there seems to be no further destruction of bone at this time. I was diagnosed in 2004 and now 8 years later, I still have no change and no pain. If your mother is having lots of pain then she needs to get treatment.

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