Rare Diseases Community
avn/osteonecrosis
About This Community:

This patient support community is for discussions relating to rare diseases and disorders. Some example include: Aarskog syndrome, Acoustic Neuroma, Angelman Syndrome, Behcet Syndrome, Bell’s Palsy, Canavan Disease, Carbon Baby Syndrome, Charcot Marie Tooth Disease, Chromosome Monosomy Disorders, Chromosome Trisomy Disorders, Devic's Disease, Dystonia, Ewing’s Sarcoma, Fragile X Syndrome, Immune Thrombocytopenia, Kawasaki Syndrome,Maple Syrup Urine Disease, Mastocytosis, McCune Albright syndrome, Pachygyria, Polycystic Kidney Disease, Prader-Willi Syndrome, Reiter’s Syndrome, Sickle cell anemia, Sturge-Weber syndrome, Trisomy Disorders, Usher Syndrome, Xanthinuria, Zollinger-Ellison syndrome.

Font Size:
A
A
A
Background:
Blank
Blank
Blank
Blank Blank

avn/osteonecrosis

doctors links anything
Related Discussions
2 Comments Post a Comment
Blank
Avatar_f_tn
Hello coop003,

The following information would be of great help.
Osteonecrosis  Aseptic necrosis, Avascular necrosis, Ischemic necrosis
Osteonecrosis occurs when your bones lose their blood supply. The bones die and eventually collapse, leading to pain and arthritis. You can have osteonecrosis in one or several bones. It is most common in the upper leg. Other common sites are your upper arm and your knees, shoulders and ankles. The disease can affect men and women of any age, but it usually strikes in your thirties, forties or fifties.
Early in the disease you might not have any symptoms. Later, you will probably have joint pain that becomes more severe as the disease gets worse.
Refer: http://www.nlm.nih.gov/medlineplus/osteonecrosis.html

Best
Blank
1774104_tn?1314218807
Help me PLEASE!!! March 2011 I was in a car accident, not to bad but was in the hospital for a couple of days, a couple weeks after the car accident my right knee started to hurt badly, but they told me things would hurt I had been in a car accident....Finally I had to go to the doctor because my knee was sooo big and red and I thought that I had a blood clot...it ended up being a Baker's Cyst and is what happened is my knee was swelling the whole time I was walking on it from the inside and the fluid ran out of places to go so it made a cyst and I ended up will a baseball size of fluid coming out the back of my knee. They did an MRI drained the Baker's Cyst although it had already ruptured and refilled. In the MRi they found a very, very, very small bone farct that they were NOT worried about at all. However they did find that I had Rheumatoid Arthritis very badly. The coma did leave me with very bad drop foot in both feet, the hospital did not move or prop my feet, because I was NOT going to live. I also for some reason ended up with incredibly bad bilateral neuropathy in both feet. I had about 9 surgeries where they cut and released my Achilles tendons so I could walk again without the braces they had to make when I got out of the hospital, they had to break and fuse all of my toes straight, etc. I had horrible pain in them and will forever, so my pain doctor that I have had since the coma had decided we were going to do a Spinal Simulator that would numb my legs from mid-calf to the tips of my toes. It took a VERY long time, I had to see pain psychiatrists, etc to make sure I was ready and then I had to have a "trial", the trial went great and after 2 long years of waiting it was a go from Insurance, Hospital, Doctor, etc EXCEPT: I used to be a Real Estate Attorney for HUD/Section 8 and Tax Credit housing. I happened to be driving in between properties during my car accident so it seemed it should be a workman's comp case, when I filed my employer fired me. So I had a lawsuit going and once I had the Spinal Stimulator I would not be able to have another MRI, kind of like a Pacemaker, so my Pain Doctor and my attorney wanted one last MRI of the knee. That was a Friday and I was on a New Construction Site that we were building for Seniors with Low Income. My doctor's assistant called and I was used to speaking to her so I was in a great mood, ready to get moving and I heard the words: "It is Dr. Arnold's day OFF, he is on his way in and needs you to meet him here. That itty tiny bity bone farct and we had still been draining the baker's cyst every 4-6 weeks, had now become way more than I ever bargained for and since that day just over one year ago.....the bone marrow in my knee my whole right femur and the head and top half of my tibia were dead. The bone marrow was dead, they could not do a replacement because of my age, I would have to have at least one maybe two more in my life and my bones wouldn't hold it anyway. So I was admitted into the hospital immediately and they did a core decompression because both men and women get this mainly in their hips and jaw from taking prednisone, alcohol abuse or severe trauma (sometimes athletes will get it), however it does NOT spread and the worst thing is a replacement. The core decompression they usually just drill little holes directly into the side of the joint affected to allow blood to flow around the joint and dead bone and marrow, thus allowing new growth, since mine was so different and my whole leg, they literally hollowed out my right femur and tibia bones, my cartilage was 100% not a thing wrong with it ODD the #1 knee surgeon in Chicago thought. Within two weeks we knew it did not help at all and on my 2nd post op visit he told me he didn't need to see me again, he couldn't help me and wrote letters to several doctor's from Chicago to The University of Milwaukee. They all turned me away. In February 2012 I had 17 MRI's and then they found it in my left ankle, next one was my right elbow, left toes. So I flew to John's Hopkins in Boston for one night to see the doctor and make arrangements to come back with my husband because we have 6 children and he is a police officer, so time is not on our side. That didn't matter though, the doctor had me in the hospital and operated on three joints within 12 hours of my getting off of the airplane. The cartilage that was 100% in Feb 90 days later in June...it was gone, there was a huge hole through my knee and he had to use the bone marrow of a child donor and built a new one, but only so I get more life out of it. So my long, long, long story is that I have been to The Cleveland Clinic, Johns Hopkins and my new home The Mayo Clinic because I have AVN Avascular Necrosis or Osteonecrosis....Necrosis no matter where you put it in a word means DEAD, every 90 days I have been to the Mayo Clinic and have found it in a new joint I am 38 years old in Sept and the ONLY joints I don't have it in is my hips and jaw. It has spread and taken over my body. About 10 weeks ago, they literally scooped out the dead bone and bone marrow of my right elbow and shaved my right hip bone off to stuff it into my elbow, thus giving me longer life in it hopefully, but the surgery has NEVER EVER been done says my elbow Dr. in IL, there are no other findings ANYWHERE The Mayo Clinic, Johns's Hopkins, Cleveland Clinic can find of an adult having it in the elbow's, feet or toes. So now THE MAYO CLINIC can ONLY keep my comfortable? Why keep going?December of 2012 my hands and wrists were 100% normal no sign of anything bad at all, 90 days later, I was told last week that they will not even go into them because I have the Necrosis in there so bad, they can only wait just like each joint I have....until each and every one collapses. They took me off all RA medicine, I used to give myself injections, etc. and now they load my up on pain meds and say: they can only keep me comfortable. So NOONE have I told this WHOLE story too and I usually don't tell anyone, you probably couldn't tell if you met me, because when I am down I am down, I can't leave my house, when I get the flu it could kill me. I had some shipping problems and tried to be honest, not make excuses. I am the most honest person you will ever meet, get me in trouble MOST of the time....but I received a letter 3 days ago they found something in the last biopsy and need to see me as soon as the kids get out of school. So instead of making my husband live like a hoarder...LOL The stuff I have I offered to people that I thought would treasure it the most and you were my Vera Lady Bev!!!! I still still be on and off, but it will be small things here and there that my husband or sister can get shipped. I remember when I applied for disability I got soooo many stories how everyone is denied the first time, you ALWAYS have to appeal it. I finished the last of my paperwork Sept. 30 last year and got my first check Nov. 18th and the only question I was asked was from a long time veteran and she asked with tears in her voice. Jen, "Can I ask you ONE question", Sure ask me anything! She said: "what does it feel like"? I said "you have heard of this"? She said: yes, but not like this it is killing you from the inside out.....I said I know.....the bad days I just get a piece of card board out and push myself around on the grass so my gardens are taken care of when I go.....and my 5 boys and 1 girl will know I left them something they will see be as happy as I am every Spring!

The Mayo Clinic sees me all the time however Dr. Vargus and the Infectious Disease Doctors and the RA doctors....can't give me an answer or any help at all. I have looked and looked and NO ANSWERS.....

Blank
Post a Comment
To
Blank
Weight Tracker
Weight Tracker
Start Tracking Now
Rare Diseases Community Resources
RSS Expert Activity
469720_tn?1388149949
Blank
Abdominal Aortic Aneurysm-treatable... Blank
Oct 04 by Lee Kirksey, MDBlank
242532_tn?1269553979
Blank
The 3 Essentials to Ending Emotiona...
Sep 18 by Roger Gould, M.D.Blank
242532_tn?1269553979
Blank
Control Emotional Eating with this ...
Sep 04 by Roger Gould, M.D.Blank
Top Rare Diseases Answerers
620923_tn?1416285879
Blank
selmaS
Allentown, PA