Avascular necrosis of the knee

Get a different orthopod! Noone aged 35 should have to wait 20 years to get their quality of life back. There should be an ortho willing to get you back on your feet! Have you had to be on prednisone for and extended period of time? Do you scuba dive? Have an accident involving the affected knee? Reason I ask is they need to find a probable cause your your AVN.

I have AVN of both femoral heads. For some unknown reason my has gone dormant and I have no pain of physical limitations form it at this point. It's likely I will need both hips replaced in the future.

Kcal, I had AVN in my right shoulder from steroid use for my inflammatory bowel disease, and I also know that pain.

I also think it's ridiculous for any doc to expect you to give up the most active years of your life to retain mobility when you're a senior. And IMO, that probably wouldn't even happen because by the time you wear out a knee there will be new products and procedures available. I think the docs are often swayed by their own "success" ratings and just don't want to do surgery that might have problems in the future.

My wonderful ortho told me he doesn't believe in the "too young" excuse, because you're always too young to be incapacitated by something that can be repaired. I'd keep looking, and be frank about your feelings. Make the surgeon see it through your eyes, ask him if he'd accept immobility now for the chance to walk in 20 years for himself.

Kcal- I have AVN in both knees. I underwent a core decompression and bone graft in my left knee. AVN was very advanced in my left leg and was visible on XRAY but my Ortho did not want me to undergo a joint replacement due to my age ( 46). I had the core decompression and bone graft surgery in Oct 2010 and it is holding up good! I have bone growth visible on the XRAYs so my Ortho considers this surgery a success. I will be getting the same surgery on my right knee as soon as my Medicare card comes in. I am in constant pain with it( right leg that hasnt had the surgery yet) but if I use my crutches and stay off the leg, I don't have as much pain and I can handle it.

Did you get an MRI on the opposite knee? If not, get one. I had no pain in my right when I was diagnosed in the Left. I would also suggest they MRI your hips, at least that is what my Ortho insisted when I was first diagnosed since the hip is pretty common.

If you happen to live in the South and would like my Ortho name and number, I would be happy to share it. He is awesome.

If you have any questions for me, feel free to ask or email me. I had the same symptoms as you in my left leg and now I am walking on it and actually putting all my weight on that leg since I am on crutches for my Right leg until surgery.

Take care!

Post Edited (pmedic) : 1/25/2013 5:38:07 PM (GMT-7)

Kcal- You are not alone, I am right there with you! There are a couple others on this site that have AVN of the knee but it is very uncommon so I am glad to meet you too!

I dont take anything for pain right now. My Ortho will give me something( Oxycodone or Fentanyl) if I have extreme pain but he insists I use my crutches and ice the leg and it did help me with the pain. At first, I was very upset at him for not loading me up with pain killers but once he decompressed my left leg, the pain in that leg disappeared for the most part and now I am glad I managed without them since it can be very rough to get off them when that time comes. I will occasionally get sharp pains in that leg but when I do, I stop what I am doing, pick my leg up and rub my knee and wiggle it and the pain disappears so we think it is scar tissue causing those pains because my xrays show that bone is actively growing in my left leg, which is great news. My right knee hurts only if I walk on it so I try not to although sometimes I am a glutton for punishment.

As for dealing with life in general...This has ruined my life. I have been unable to work for the past 3 years and I was just awarded disabilty. I too am very lucky to have a great husband that I cant say enough good about!

I am going email you my Ortho name and number. He has a special procedure that he does during the bone decompression that he think accounts for his high rate of success with the bone decompression surgery. He uses a big drill bit ( size of my pinky finger) and drills four holes in the knee and carefully scrapes out ALL of the dead /necrotic tissue and bone. He then uses cadaver bone and fills the hole and doesnt allow me to walk on it for months. From what I read online, my left knee had less than 10% chance of successful surgery since it was already starting to show bone collapse yet it was successful so I am very impressed with him.

Your Ortho should have been checking other high probabilty bones, just in case because AVN is silent until it is very advanced so the sooner we get you to another Ortho, the better! Standy by for an email!!

Post Edited (pmedic) : 2/2/2013 11:52:07 AM (GMT-7)

AVN is always easier when diagnosed early. In my case, I had pre-existing rotator cuff problems which caused pain, coupled with a really high pain tolerance, so mine was more advanced. Core decompression didn't help, but I was able to get by without a joint replacement. My ortho debrided the necrotic area and placed a pegged implant to fill the void. So far so good, although I do still have some pain and some decreased strength and range of motion.

I know what you mean when you say you feel all alone in this. I did also but through this forum you are the third person that has AVN in the knee. We have become really good friends. A daily support system for one another. I surprised to hear that the total knee surgery was not successful . The docs say that the only procedure that could work if nit for my age. Just a few weeks ago they tried a procedure called RFA radio frequency ablation I think .. Anyway they wanted to burn nerves in my knee to eliminate the pain. It was AWFUL! The procedure was excucrciating and the pain stayed like that for almost two weeks afterward. We have lots to chat about! You can email me at [email protected]. I'll tell you what the docs are doing for my pain now. As it has been decided that pain control is my only option.

Hope to hear from you soon.
KC

Hello, I was reading your post and see that you suffer with AVN.... I also have AVN in both knees and am being scheduled for surgery for my first knee replacement. I am 52 and it has been a struggle everyday for a while now and I am in a wheelchair. I hope to be able to stand and walk again...and possibly give someone else hope....for a better day...I would like to hear more about your story....and be of some support.

Simply, Hoperemains

To all out there with AVN, I really know your pain.....I personally have got RA (Rheumatiod Arthiritis), but my son (not even 18) yet was diagnosed 4 weeks ago with Osteonecrosis AVN in the LFT Knee.........which was so devastating for him. Ortho doc said he needed to say of the leg with crutches, which we make sure he does, went to see the Ortho Specialist that's gonna do the bone graft a week ago, just to hear my son's case is not an emergency and have to wait till the 22nd of June 2014 for him to operate!! In the meantime my son, which was very active playing football, doing karate & playing with his friends on a daily basis is now clunched to the couch because he's in so severe pain all the time & when he's to active it causes even more pain!! I really feel for all of us!!!