Although I am still disabled I was finally able to move back to San Francisco last week after having to live with my parents for nearly a year.
I have now had to begin a new search for doctors all over again. I have to find myself an orthopedic specialist and a hematologist. Every 4-5 months I need to have new MRI’s of my femurs performed to see if the disease is still regressing. I met with my new GP the other day. I explained to him all about my disease and clotting disorders, neither of which he knew much about (at this point I’m used to that, as so many of you know). I told him I have to have MRIs performed in a few months to track my osteonecrosis (avascular necrosis) and he said: “don’t worry I can order those and the radiologists at the local hospital will be able to read them just fine.” I didn’t say anything in response, because frankly I didn’t want to be rude.
The truth is radiologists have failed me time and time again during my journey with ON (AVN) and I don’t trust them anymore. Radiologists don’t seem to be trained to pick up ON (AVN) on an MRI, X-Ray or Bone Scan.
The first report for the first MRI I had taken a year ago, when I started having pain, said there was nothing wrong with me. The second report of an MRI with and without contrast, at a different hospital, said there was no sign of ON (AVN). A third report from a bone scan performed at yet another facility said I might have bone cancer. I was getting desperate and went to Stanford Hospital where I was told there were some of the best radiologists in the world. The Stanford radiologists reviewed both my MRIs and my bone scan and not one of them picked up on the fact that I had osteonecrosis (avascular necrosis).
I didn’t believe any of the reports (I knew something was seriously wrong) and I begged to see an orthopedic oncologist who I hoped would help me. He took one look at my MRIs and knew immediately that I had osteonecrosis (avascular necrosis). When I had follow up MRIs, four months later at the hospital near my parents house, their radiologists misread my osteonecrosis as osteoporosis.
Would I put my disease in the hands of a radiologist? Absolutely not!!!! The most important thing to do while calling around for orthopedic doctors is to first ask if they A) know what ON (AVN) is and B) can they read it on a scan. I have read countless stories on various ON (AVN) support groups where people’s ON (AVN) was misdiagnosed for months because of the negligence of radiologists and doctors.
Osteonecrosis (Avascular Necrosis) is not a disease where time is on your side. If you don’t feel confident that your doctor knows what he is doing, find another doctor! You have to act now, to at least try to save your joints and stop the progression of this disease.
I completely agree. My OS saw the AVN on xray of my knee so when we got the report from radiologist it made no mention of AVN my OS was shocked she said it was plain as day on both xray & mri.So we then asked for another reading of the MRI they also said no AVN. I then went to Emory only because my dr couldn’t tell staging so I was hoping they would be able to tell me the stage and the dr I saw said I had extensive arthritis but no AVN but I don’t even think he looked at the MRI he just quoted from radiologist report. I was so frustrated & angry when I left, but it made me realize what an amazing OS I had.
These radiologists are so ignorant and lack education and training when it comes to recognizing AVN!!!!!! Something needs to be done about that. So many people are taking the word of radiologists and they walk around with necrotic bones it’s terrible!!!!!
I too was diagnosed after seeing 7 doctors. The orthopedic surgeon didn’t see anything on x-rays and referred me to a vascular surgeon who ordered an MRI. He diagnosed the ON after reviewing the MRI results and then referred me to the Podiatrist/surgeon that I’m seeing now. By my first visit with the Podiatrist a few weeks ago, X-ray showed that my navicular bone had already collapsed in my foot. I feel as though the long delay in getting a diagnosis has cost me so much and I feel cheated by the medical profession as I am in one of the best areas in the country for hospitals/doctors. I have Duke, UNC and others very near my home. Most of my doctors have studies or interned there. I feel as though my options are limited as I am also a Type 1 Diabetic (for over 35 years) and a heart patient (post bypass 13 years ago) and I’m only 55 which I don’t consider old by any means. I’m glad I found this blog site as it’s helping me learn alot.
Carol in NC
It’s been a year since my son first began feeling pin in his hip. Once we began getting MRIs, the radiologists always included AVN as one of the possible contributors to what they were seeing on the screen. I on read a radiology teaching website they are liable for missing this diagnosis.
I have learned to obtain many copies of any radiology and send it to different places. However, I never considered sending it to a specialized radiology group, but this sure sounds like an idea. Additionally, obtaining insurance coverage for this service seems more than reasonable.
Remote radiology reading is common within radiology groups who have radiologists all over the map.
While most believe my son has AVN, some differences of opinion have surfaced again recently.
While he has progressed ridiculously as I try to steer this boat, the hyperbarics did hold up progress and buy me a little time, at minimum. Five surgeons at Duke were not sure he has AVN, so they asked to see him. The orthopedic department at Duke looks at AVN radiology all day long, so this is most peculiar, but it is not the first time our diagnosis has been in question.
Typically, in the end, additional radiology is ordered and others consulted. and then they all say it is AVN. Yet, there was the time Dr. Glueck considered Levonox, but an orthopedic could not see any necrosis. I think they see radiological indicators and Xray damage, but no active necrosis; if he was older, they might just say osteoarthritis, which may be what happens to
many adults. Because he is 14, they may look a little further. That makes me wonder if pediatric orthopedic radiologists might be of benefit to adults…maybe they have more expertise
as athletic adolescents and teens seem to be common victims.
It also might be beneficial to start sharing radiologist information. Here in Knoxville and I suspect most places, the radiologists have their own company and contract with hospitals and doctors offices. They do their own billing, so it seems they could take a patient from anywhere and bill.
I think there are likely stages of AVN that are easier to diagnose than other stages…this may lead to confusion in our case. Just some thoughts on radiology.
I was told the same thing for years! I was told that it was a torn labrum and that I just needed to modify my activity. I collapsed on an airplane last week and was diagnosed in the ER with advanced AVN. I can no longer walk and have to have a total hip replacement next week. My mountain climbing days are over-due to mistakes made by the medical community. I wish you all the best. Life as I know it is over.
I was diagnosed with AVN ( suspected as caused from IV steroids) of the humeral
head. I began feeling intense soreness in my sternum and 2 ribs a year later.
An MRI of the chest was done. The radiology report stated there was bone marrow
edema in the sternum and 2 ribs. A Hemotologist’s report stated,” she does have
abnormal signal intensity in the marrow space throughout much of her sternum
as well as her upper thoracic vertebral bodies and her L humerus”.
So, these 2 physicians agreed. I thought I finally had a specific answer.
But, when another MRI was ordered in my hometown, they did not recognize
AVN at all. That MRI was read as ‘ patient has chostochondritis’ .
Anyway, with a completely different opinion in the reading of a current MRi,
even though the pain in my sternum is significantly worse, the radiologists
in my hometown, they absolutely don’t see anything that the radiologist and
hematologist saw ( in a big city teaching hospital).
I am stunned by the complete difference of opinions in evaluating my
MRI. The rational thing to do would be to go back to the teaching hospital
where the diagnosis of AVN was so certain and pinpointed the precise
areas where I still experience intense soreness and pain.
Cost of traveling back there is a consideration, though.
This is so frustrating! And I don’t know who to believe.
The Radiologists here say there is no necrosis accept in the L
numeral head and that’s all. I have an instinctive belief that the
Teaching hospital’s radiologist and hematologist were correct.
The pain in my sternum is constantly there and also in the 2 left ribs.
But, with radiologists here not recognizing ANY of the same
abnormal signals, and saying, “your pain is from chostochondritis
alone”….I feel defeated. Any advice would be appreciated.