I WOULD LIKE TO HEAR FROM ANYONE THAT HAS AVN IN MULTIPLE JOINTS. MY MOST RECENT MRI SHOWS IT IN MY HEEL,HAS ANYONE EVER HEARD OF THAT?? I FIRST HAD IT ONLY IN MY HIPS AND ANKLES, THEN AFTER AN INJURY TO MY NECK, THEY (THE DRS.)PUT ME ON STERIODS AND TOLD ME THE EPIDURAL SHOTS HAD SMALL AMOUNTS OF STERIODS IN IT, WOULD'NT EFFECT ME EVEN THOUGH THIS WAS THE SAME DR. THAT TOLD ME I HAD AVN FROM STERIODS. I HAD A LOT OF TRUST IN THAT DR. BECAUSE HE WAS THE DR.THAT TOLD ME HOW I GOT THE AVN,ALL THE OTHER DRS JUST DID'NT KNOW.NOW I HAVE AVN EVEYWHERE SHOULDERS,KNEES,ELBOW,HEEL,EVEN HAVE TO HAVE MY HIPS REDONE. THE DR HAS SINCE MOVED!I WOULD LOVE TO ASK HIM HOW THIS HAPPENED.BUT THIS AVN HAS ME NERVOUS BECAUSE IT HURTS SO MUCH,AND I'VE NEVER HEARD ANYONE GETTING IT IN THEIR HEEL. SO IS THERE ANYONE OUT THEIR THAT HAS HAD SOMETHING LIKE THIS HAPPEN TO THEM??? I WOULD LOVE TO HEAR FROM YOU... THANKS,NANCY

-- Nancy Greenberg (greenplant@mindspring.com), September 14, 1999

Answers

my daughter has every joint affected except fingers at the moment!!!several bones in one of her feet have actually been destroyedthere appears to be little that can be done apart from replacing all affected joints core decompression and bone grafts appear to be a bit hit and miss. eventually joint replacements arerequired pain control is vital to enable one to have any kind of life but what of the the side effects for long term use this is a choice for the individual i wish that i could offer some help the avn page has and is a godsend

-- val hussey (vald@one.net,au), November 07, 1999.

Try swimming if you can get access to a pool. I have had AVN bilaterally in hips for 15 years and swimming has kept me walking.

Tony

-- Anthony Paul Martello (hammerthead@yahoo.com), May 22, 2001.

I was diagnosed with AVN in both hips in August and just this Mon got a dx of AVN in my right shoulder. I also have hemoglobins SC disease. This is very new to me, but now I'm facing surgery. I don't have anything to share with you about my experience, but I do hae it in multiple joints. My question is what has recovery for various people been like?

-- Denise Hedgeman (dhedgeman@home.com), November 16, 2001.

I am 23 with AVN in every joint of my body, I dont even have the option for surgery because I am to young. I got it from corticosteroid use, I am in stage 2b in my hip and stage 2 in all my other joints. I am supposed to sit in a wheelchair to prevent collapse but I usually use my crutches to walk, wheelchairs are just not my thing. Just recently my hips have been starting to hurt alot. I havent slept in almost a week that pain is getting so bad. I hope maybe its just the weather or something cause this is worse then its ever been. I am sorry to hear you have it to. I wish you all the luck. I have seen 4 differant dr.s One dr. Has actually given me hope that I might be able to "cure" or least stop the progression of the disease with this medicine he put me on. He has had great results with his other patients, so I guess time will tell. I just hope he's not giving me any false hopes cause this is what I am sort of hanging onto. Feel free to Email me anytime. @ MKRISTIN73@aol.com

-- Kristin (mkristin73@aol.com), December 04, 2003.

Nancy I have never heard of AVN of the heel? I was diagnosed with AVN bilaterally in 1999. I had a THR and opted for the cermaic hip which was at that time not yet approved by the FDA. They said that this hip would last longer but it has its downfaults. I still have problems with stairs. I have never heard of AVN of the heel. My Doctor feels that my AVN is a result of trauma to the region. All I can say ios get a good doctor and if you can avoid doing the replacemtn till you cant walk I suggest that. It has been a tough recovery period. One thing I can tell you is to keep yopur chin up. I find that bath salts help a great deal. I am forever in the tub. Just try not to think about it. My advice is to go as long as you can without surgery cause it is a bear. Do you knoiw anything about bone graphs as I am afraid it is time for me to do the other hip! YIPES! I am afraid most of the time of the surgery. I havent used these support groups to the best of my ability so I say keep a good attitude and push as much as you can. Email me and let me know how u are doing. Good luck. Mike in FLA

-- Michael (mhirschhaut@prodigy.net), January 23, 2004.

I had a THR of my left hip in 1999, since then I have had my left shoulder affected, to the point it won't go over my head. But I refuse to do a replacement, because the success rate of shoulder replacements isn't great, and the range of motion is similar to what I have now. I have had the shoulder issue for about three years now, and have learned how to work around it. I just recently found out, last week that I now have it in my ankle and my knee. See the surgeon next week, yipee!! I'm going to try to do bone grafting because the involvement is new, wasn't there in January, and is there now in March. So hopefully, I've caught it in time. As painful as this disease is, I agree with others, wait until you can't function before you do replacement surgery. The recovery is long. If you can bear the pain, I would wait for a long time. I'm hoping for new technology in replacements to come along and save me. It never gets any easier finding out which new joint has joined this list of impacted. Just when you think you have adjusted to life with AVN, it hits you again and you have to readjust and mourn all over again. I got mine from Prednesone (Sp?), I'll never take it again, but didn't have a choice as it was part of my chemotheraphy protocol, which did save my life in the end, so I guess at some point you have to focus on some silver lining. Somedays it's really hard!

-- Mary Wiley (wileyecoyoteaz@yahoo.com), March 23, 2004.

Thank God I found all of you, I think it's great to get personal views on our avn, I am so sorry you all have pain and that it seems to go to every other joint. I did'nt know that, doctors never tell me much. I got avn from 10 years of prednisone use because of my lupus, I did'nt even know this was a complication a person could get from that, but at the time, it seemed the best I could do for my lupus. 6 months ago, they finally realized I had it in my ankle, after months of telling me all I had was a sprained ankle. I had the surgery, and it was tough, but the donor bone they put in did'nt work, so now I have to have itagain, only using my own bone from my hip, I don't know if I should, since I have osteoporois really bad. If it doesn't help why have to go though all that again. I'm going to wait until Sept to do it, please mail me at my e-mail address if you can help me, thanks,Joanne

-- Joanne Urias (coloradourias@aol.com), April 10, 2004.

Ok, basically for all of you with AVN at the early stages or early to mid stages this will be of benefit. I have had core decompression done in 2000 for my R. Hip, and my left him as of now is slowly starting to bother me. I dont have any medications or medical use that caused this so it is a mystery for me right now. I'm 25 years old and it sucks, because I love the sport of Soccer and I cant play it anymore to the extent I want to. I used to be intensely in martial arts and cant spend too much time on it either. But mentally, I'm not giving up, dont let a doctor dictate what you can and cannot do. I suggest taking Yoga it allows you to understand the limits of your body. Here are 4 steps to follow on the road to painrelief and hopefully recovery. 1) Learn your body, when it hurts, listen. 2) Anytime discomfort is felt try to take some rest, and probably some bath salts as well. This will relieve pressure off of your joints. I rest whenever I feel like my body over worked. If I didn't I'd be in terrible shape right now. 3) Maintain a good diet, make sure you get all your nutrients in for the day and drink lots of liquid as it helps your cartilage. Make sure you maintain a good healthy weight, dont be overweight (If you need help with your diet e-mail me at my email address). 4) Workout, weather it be swimming, gentle walking (depends on your pain threshold), light weights, or cycling, each will have a benefit on you because the stronger your muscles the less pressure on your joints. Trust me on this, if you follow these simple steps you will definately delay the inevitable of replacing joints. "The mind is very powerful tool, it sustains and maintains our capacity to do things, if we give up, we lose all hope." Contact me if you have any further questions.

-- Amir K (amirkingpin@hotmail.com), August 09, 2004.

I have AVN in eight joints, so far. Bilateral hips, shoulders, knees and elbows. I have had both hips replaced (the right one had to be revised 6 weeks after replacement) and my left shoulder has been replaced. I had core decompression on the right hip (bought me ten years before joint replacement), left shoulder (too far gone, it didn't work), and my right knee (so far this one has worked wonderfully). My AVN is caused by lupus (SLE). I developed the AVN prior to the lupus being DX'ed, so we know it wasn't caused by steroids, but rather by vascular inflammation. For the last couple of years, I've been waking up with severe pain in my left ear cartilidge/skull area. It feels like when you put a rubber band on your finger and leave it on too long so it cuts off the blood supply. Now I am noticing a swelling in my skull at the site of the pain. I've heard of AVN affecting the skull and suspect that I have developed AVN in this location. I can't find anything about the treatment for AVN of the skull, but I imagine it is the same as for the joints. I am temporarily living 13 hours from my orthopedist and I don't trust the docs in this area, so I guess I will just wait till I get back home within the next six months...or see if I can get in to see him when I visit my hometown. I darn sure don't want these incompetents in this area touching my skull! If anyone has experience with AVN of the skull, please email me at mjnye265@aol.com. I would really like to know what to expect.

Anyway, I was first diagnosed with AVN at age 28. I have been disabled and unable to work due to the AVN for about six or seven years. Besides the lupus and AVN I also have firbomyalgia and am in chronic pain. However, thanks to good pain management doctors, I am now able to live with the pain. The right hip replacement has given me very little trouble, but the left hip replacement causes me a lot of pain. I get a lot of thigh pain from it and I frequently get bursitis in that hip. I can walk for short periods, but not much and am unable top stand up for long periods of time. Standing in line at the grocery store is murder. I have no problem going to the customer service desk and explaining that I am disabled and asking to be checked out there..or asking the manager to open a check out lane for me so I don't have to stand. Most stores are very good about complying. WalMart is terrible, though. They never have enough lanes open and won't open lanes for handicapped people so that we don't have to stand in long lines. Personally, I don't understand why stores don't have check out lanes for disabled people. They have special parking for us, why not special check out lanes? OK, I'll get off my soap box now.

-- Marcie Nye (mjnye265@aol.com), October 11, 2004.

I too have AVN. Was diagnosed in Alabama & of course came home to Florida to have left hip replaced.

What a fiasco! After regular surgery (12" incision) they kept me in bed for 2 days. My biggest fear of being in a hospital is coming in contact with someone with pneumonia because my immune system is so depleted (COPD & CFIDS). So where do they put me for my rehab? Of course, in a room with a woman w/ pneumonia. I signed out a/m/a and found out the lady died the next day.

There was no "recovery" even with 3 x weekly PT. My Dr just kept renewing my Vicodin ES - for over 3 months! Then my right hip blew out.

Started research - online & calling every Dr who I had ever seen for the slightest ailment. Was referred to Dr. Kenneth Bramlett in Birmingham, Alabama. When I first met him I wasn't sure I could accomplish all of his pre-surgery requirements. He is a STRONG believer in prehab rather than rehab. He is also renowned for MIS (Minimal Invasive Surgery) and correcting other Drs. mistakes.

Long story, short version: within 4 hours of THR of my right hip & manipulation of left hip I was walking! 8 hours post-op I was walking w/o a walker. 24 hours post-op Dr Bramlett released me from the hospital & I walked out all on my own with NO PAIN!! Was finally able to dance & have sex with my husband of 2 years.

There is help, but not from any Dr in Florida who I have met lately. Am of the firm opinion that the only Drs. practicing in Florida can't get a license anywhere else.

BTW, my left shoulder and elbow have now blown out. Has anyone had a complete bone replacement? Does anyone have recommendations as to which Drs & what hospitals are the most current on all these issues?

Would appreciate any & all info. Please contact me directly via my email. Wishing y'all an active & painfree recovery. Peg Burns

-- M.A. (Peg) Burns (MABlinds1@aol.com), November 09, 2004.