Does anybody have AVN,Osteo Necrosis or Ischemic Bone Necrosis looking for support and input...

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rjbeck
Regular Member


Date Joined Feb 2008
Total Posts : 255
   Posted 7/18/2011 3:47 AM (GMT -6)   
I have looked and looked thru many websites to find any and all info on AVN, Osteo Necrosis or  ischemic bone necrosis but have not found many sites. Does anybody here have this bone disease. If you do can you tell your story of how you deal with this disease, what med's work for you, any type of surgery you have had done. Any input would be greatly appreciated. Even if you don't have this disease and are familar with it your input would be greatly appreciated. Thanks RB
AVASCULAR-NECROSIS (AVN) in 6 joints. HIPS,KNEE'S andSHOULDERS-Replaced 1 shoulder. replacing left hip 9/8/11 then left shoulder.
MED'S-Methadone 30mg's TID and OXYCODONE 15MG 1 TAB QID.

mrsm123
Veteran Member


Date Joined Dec 2007
Total Posts : 1235
   Posted 7/18/2011 3:31 PM (GMT -6)   
NoRelief,
There are several groups for osteonecrosis or avascular necrosis on Yahoo. Here are two of them.......http://groups.yahoo.com/group/osteonecrosis  and http://health.groups.yahoo.com/group/avascularnecrosis/
 
 
 
I hope that these will give you some support.
Sandi

Chutz
Veteran Member


Date Joined Jan 2005
Total Posts : 9090
   Posted 7/18/2011 10:29 PM (GMT -6)   
Hi RB~

And welcome to Healing Well and to the Chronic Pain forum. I must admit this is the first time I've heard of these disorders. I looked them up and they sound absolutely miserable. I'm so very sorry that you are dealing with this illness. Try the links that Sandi shared and see if they care what you are looking for. We don't normally recommend that people leave our site for another but in your case we don't have a forum that comes anywhere near what you are dealing with...except the Chronic Pain forum. I do hope you will continue with us also as we care what happens to you the moment you walk through the 'door' to this forum.

Best wishes,
Chutz
Moderator on the Fibromyalgia and Chronic Pain forums
~*~*~*~*~*~*~
Fibromyalgia, Insulin Dependent Diabetes. Ulcerative Colitis, Rare form of Dermatitis, Collapsed Disk, Osteoarthritis (especially in right hand and neck) and a few other side dishes
~~~~~
Wrinkles should merely indicate where smiles have been.
Mark Twain

mrsm123
Veteran Member


Date Joined Dec 2007
Total Posts : 1235
   Posted 7/19/2011 12:07 AM (GMT -6)   
Chutz,
Normally, I would not have posted links to another group/s, but avn is a different major problem and the treatments for it can be really difficult to get sorted out. It is painful, I have it in my wrist and it gives me fits most days. The pain from it is treated much like any other chronic pain condition but the surgeries, best treatments and referrals to doctors who are extremely familiar can only be found in groups such as those on Yahoo.
That's why I posted the link , to give NR resources for finding excellent care, with the right doctors and information about the latest treatment options.Thank you for being so understanding.
sandi
Motorcycle accident 1992, Back problems from 92 to 2005. August 2005- early 2006- Chiropractor care
March 2006- consult with surgeon -PLIF/TLIF L4-5, spondylolysthesis, canal and foraminal stenosis, multiple herniations
Post Op Cauda Equina Syndrome
Revision August 2007- salvage op
March 2011- 2nd onset of Cauda Equina Syndrome
Needs surgery to prevent paralysis

rjbeck
Regular Member


Date Joined Feb 2008
Total Posts : 255
   Posted 7/19/2011 2:33 AM (GMT -6)   
Thanks for the input, I really appreciate your help...I plan on being around the board and hopefully I can also help someone with some advice from my experience's and from working as a respiratory therapist for 15yrs before being disabled...Regards RB

AVASCULAR-NECROSIS (AVN) in 6 joints. HIPS,KNEE'S andSHOULDERS-Replaced 1 shoulder. replacing left hip 9/8/11 then left shoulder.
MED'S-Methadone 30mg's TID and OXYCODONE 15MG 1 TAB QID.

NiNi53
Veteran Member


Date Joined Mar 2011
Total Posts : 816
   Posted 7/19/2011 8:21 AM (GMT -6)   
The last mri I had, which was 2010, in the written report it said there was necrosis in my hip, my left hip to be more to the point.  I asked my sister what necrosis was and she told me it was tissue that was dead tissue, I think.
 
Of course my pm doctor was given the report, actually I picked it up when it was ready and took it to my next appt.  He never said anything about it.  Maybe I will ask him when I go this month.  He did however give my a shot in the hip of cortisone, I am pretty sure.
 
I am now going to look on the site suggested, I am very curious now.
 
Take care, and hope you are having a low pain day.
degenerative disc disease, fibromyalgia, osteoarthritis, neuropathy, lumbar laminectomy july 1998 no help, rechargeable neurostimulator unit low right back w/lead wires to left side and right leg unit not working just sitting there.i am 57 years young in may will turn 58. i have 2 grown daughters, 25 and 29. i have 2 grandchildren, 9 year old grandaughter and 5 yr. old grandson

NiNi53
Veteran Member


Date Joined Mar 2011
Total Posts : 816
   Posted 7/19/2011 8:30 AM (GMT -6)   
Well that was scary, the info I found claimed this could be caused by the very shots I have been given in my hip.  Whats worse is that is what my sister told me.
 
Ok I am definetly talking this over with my pm doc this month.
 
Thank you for the valuable information mrs123.
 
Take care
degenerative disc disease, fibromyalgia, osteoarthritis, neuropathy, lumbar laminectomy july 1998 no help, rechargeable neurostimulator unit low right back w/lead wires to left side and right leg unit not working just sitting there.i am 57 years young in may will turn 58. i have 2 grown daughters, 25 and 29. i have 2 grandchildren, 9 year old grandaughter and 5 yr. old grandson

mrsm123
Veteran Member


Date Joined Dec 2007
Total Posts : 1235
   Posted 7/19/2011 6:41 PM (GMT -6)   
You're welcome Nini.....if you have necrosis in your hip, you really need to be evaluated by a hip surgeon and have an updated MRI to see how/what changes have been caused in the hip.
Ostenecrosis in any bone or joint can lead to the collapse of that bone or joint. Although it is usually found in hips, knees, ankles, shoulders, it can also be found in the bones throughout the body.
Treatment for it, depends on the stage of the necrosis, whether the joint is in danger of collapse, and how far it has spread, if at all. Some people can have minimal signs of necrosis in a joint and never have it progress at all, others can have a slow progression that eventually leads to further problems , and still others can have a rapid progression.
I was given injections in my hip joint too for pain , and since I have osteonecrosis in my wrist, I suspect it may be effecting other joints as well. Mine was a rapid progression, and all that is left for me, now is to let them fuse my wrist....
I hope that everyone keeps in the back of their minds, that injections of cortisones, of any type into joints can cause this condition and the number of injections should not exceed three in any given year, no matter the location.
Sandi
Motorcycle accident 1992, Back problems from 92 to 2005. August 2005- early 2006- Chiropractor care
March 2006- consult with surgeon -PLIF/TLIF L4-5, spondylolysthesis, canal and foraminal stenosis, multiple herniations
Post Op Cauda Equina Syndrome
Revision August 2007- salvage op
March 2011- 2nd onset of Cauda Equina Syndrome
Needs surgery to prevent paralysis

mrsm123
Veteran Member


Date Joined Dec 2007
Total Posts : 1235
   Posted 7/19/2011 6:47 PM (GMT -6)   
www.niams.nih.gov/Health_Info/Osteonecrosis/osteonecrosis_ff.asp


Here is a link that discusses the use of steroids and osteonecrosis. I hope that it helps someone avoid this painful condition.
RB, you're welcome and I'm glad that I could help. Seems you came here for a reason, and some resources, and you found them. That makes me happy.
Sandi



Sandi, I went in and made the link Hot. Thanks for your wonderful help here! We all appreciate it! Thanks! SE wink

Post Edited By Moderator (Screaming Eagle) : 7/19/2011 6:04:07 PM GMT

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