Avascular Necrosis Community Group

Avascular Necrosis is simply bone death. As a AVN sufferer and nurse, this group will be to inform and support.

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imarriedapornaddict2 04/22/2010

Hi fellow AVNers!

How about an update? How about sharing with us where you are in your journey with AVN.

Juliette(Moderator)

deleted_user 05/30/2011

I am really suffering right now! I've had one surgery to drill and clean up my immflamation. I have AVN of the talus in my ankle. It is stage 5 with a hole and bone fragments floating around. I am in need of another surgery because the hole has gotten larger and the bone chips need to be removed. My husband got laid off so we lost our insurance. I do not take pain meds because nothing over counter helps anyways. It's hard because I have a very active toddler and a 14 yr old. I run a home based business and homeschool my 14 yr old. I don't have an option to stay off of it. It just recently got increasingly worse!! I am 31 and at home waliknh with a cane. This is emotionally draing because I want to keep up with my own life!

imarriedapornaddict2 05/30/2011

Hi Mejia,

I understand the suffering you feel. I know your pain. I know your frustrations.

Fortunately, my ankles are stable, as of now. I have already replaced both hips and currently dealing with active avn in both knees and both shoulders. I have had all I can with joint replacement surgeries. The others will have to get me to a very bad place before I replace them.

You said you do not take meds. What treatment regime does your doctor have you on? Are you scheduled for surgery, if so, what type? I am assuming the first one was a core decompression? While you may not be able to stay off it. Has he talked about using a walker, instead of a cane, in order to minimize your weight bearing?

Feel free to post a response or email me if you just want to talk to someone who truly understand that dead bones hurt bad:(

deleted_user 05/30/2011

Wow! Do you know why it is in so many different areas? I have pain in my shoulders as well. My knees are good and so far my other ankle just has severe arthritus. How did your ankles become stable? I do not have a surgery scheduled because I no longer have insurance. I don't know why the won't put in a cadiver bone on my ankle. There is only one surgeon in my area that will even agree to do my surgery because of the size of the hole and he will only drill and clean up the bone fragments. I just wonder if there is hope in my future that this could get any better. Right now I can only walk on it for about 10 mins.

Were you ever on prednisone for a prolonged period of time?
Thank you for getting back with me. I have tons of questions in regards to this .

imarriedapornaddict2 05/30/2011

I am sorry to hear about your husband's job and loss of health insurance. I understand that one part would be to have the bone fragments removed or is that the full extent of the surgery he is willing to do? If so, I do not see how that would repair the hole or ease the deterioration caused by avn.

Is it possible for you to buy yourself a walker and use it? The bone's stability is compromised due to the hole. If you continue bearing weight on it, you will be causing further damage to the diseased bone and the surrounding ones. I am not trying to scare you but it would not surprise me if your increased pain is now indicative of a fracture or fractures.

You may or may not be aware that one of the risk factors of avn is developing micro fractures or fissures in the bone. I do wish you would consider using a walker and bear little to no weight on that foot UNTIL you can get medical help.

No, I have never used Prednisone. I have avn secondary to a pre-existing health condition. My initial bone scan showed avn in every joint, in my ribs, in my spine and in my skull. My doctor says we will worry about the other areas when they become symptomatic. That is ehy I said that the ankles are stable, AS OF NOW. The knees and the shoulders did, so that's why I got the MRIs for confirmation. I am supposed to replace them but I am not interested.

I believe in keeping hope alive so I would recommend that you focus on getting insurance, look outside of your city, county, or even state, to find a surgeon who offers you better options.

I know that receiving a diagnosis of avn can be a time filled with questions, fear and doubts. If I can help allay some of them for you then I would be thrilled.

deleted_user 05/30/2011

I am so sorry you are going through that!!' is it normal for AVN to attack all of your joints? How do you function? Can you do any activities? I am curious, all week I've been icing my ankle and taking Alieve but it has not helped at all! In fact my whole leg is hurting from the ankle to the thigh? I was afraid I may have a blod clot.

Ok confession time. I have never used my cane outside in the public. This has been a huge struggle for me. I only use it in the house. I skip on activities that require walking and standing as much as possible. People tell me to ride on the wheel chairs at the store buy I just can't. I am so sorry if this sound terrible. I am also in the MS group because the think I have MS. I won't take the meds they are offering. I only have a few lesions in the brain and one in the spine. This started when I was 27. I was young, energetic, and active. It seems out of everthing my biggest struggle is my ankles.

imarriedapornaddict2 05/30/2011

Thank you for the sympathy and empathy. I function within a modified framework. My type A personality and faith MAKES me continue to enjoy life though it suddenly slowed to a crawl.

With the pre-existing condition I have, getting avn in multiple sites is quite common. Avn is just one of the many secondary conditions that I have to live with.

I know how you feel about mobility devices. I walk with a cane and for longer distances I HAVE to use a wheelchair. Doing so assaults my self esteem, not doing so puts me in immense pain for days. In the past 5 years since my diagnosis, I've lost my independent mobility. I've lost my nursing profession. I've lost my patience, my sense of self and my quality of life. I have gained a closer walk with God, with my son and gained a insider's view of a chronic pain sufferer's life.

I can understand your ankle being your biggest struggle. It restricts your mobility and having chronic pain robs you of joy, energy, patience and sleep. I assume your ms is not causing any problems. I hate meds too so I would probably refuse them as well.

Btw, you wouldn't have to skip out on any activities IF you would consider burying pride and fashion in lieu of comfort and fun. I've turned myself into a social recluse because of that, I hated the loneliness and isolation. People, for the most part, don't stare anymore. I think they did because it looked odd seeing a young person hobbling with a cane, using a wheelchair and on occasion, using a walker. Now they are more helpful than curious.

deleted_user 05/31/2011

Thank you very much for sharing your story with me. It is very helpful to know someone gets it or has an actual understanding on the subject. I was very competive in sports growing up and then my favorite past time was dancing. Now I would love to just go fo a stroll ; ) I went to the urgent care center and waited 4 hours today and the Dr. gave me Hydrocodine and got me out of there in 2 mins. He is going to call in a referral for a specialist but I am very concerned to allow a community hospital to cut into me. They are students and unexperienced. Like I mentioned I went to 3 surgeons that would not even do the surgery and sent me to the one that was supposed to be the best in my area in this problem. I wonder how long I can wait before getting the surgery.