Welcome to our Frequently Asked Questions page
This is a slightly different sort of "FAQ" page. The answers are from our own group members, taken from polls that we conducted ourselves. Please note that we are not medical professionals. These answers are actually a compilation of the opinions, based upon their experiences, of our own ON/AVN patient-members. We designed our FAQ paget this way on purpose, to give others a better insight into the disease itself, and into some of the treatments and procedures that we have undergone.
If you are seeking information from a medical perspective, please visit our companion group's site, the NONF
The following is what ON/AVN means to us and how it affects our lives.
Which joints are affected?
Hips were the most frequently reported affected joint. That was followed by knees, shoulders, and ankles. Of those, most cases are bilateral, meaning both hips (knees, shoulders, ankles) are affected. Only a very small percent have ON/AVN of just one hip, knee, shoulder or ankle. At least one member reported ON/AVN of the wrist; and a few reported having it in the jaw, or elbows, hands, and feet. At least one has it in two ribs.
What was the cause of your ON/AVN?
Most of the respondents either knew for sure that their ON/AVN was steroid induced, or they had taken steroids at some point, and their doctors were unsure if that was the cause. Quite a few listed trauma as the cause of their ON/AVN. Very few listed no known cause (idiopathic) for their ON/AVN.
What specialty of doctor diagnosed your ON/AVN?
Almost everyone answered 'orthopedic doctor.' However, we did have at least one who was diagnosed by an Emergency Room physician, and one by a chiropractor. Most people did see a rheumatologist, usually at first, who then referred them to an orthopedic doctor. What was disturbing was that for many, it took several weeks or months to get an accurate diagnosis. It just takes time to set up appointments for x-rays, MRIs, bone scans, and return appointments to the doctor. Also, we had several cases where their ON/AVN was diagnosed as something else -- in one instance, it took one woman a full year to get an accurate diagnosisof ON/AVN. For her, it turned out not to be gout, after all.
Until you were diagnosed with it, had you ever heard of ON/AVN before?
Of all the people who responded, only two had ever heard of it before. One knew a teacher who had it, and the other has a spouse who also has it.
As for surgery, this is what we asked:
What type of surgery did you have?
Answers: Core decompressions, core decompressions with grafts, Free Vascularized Fibular Grafts (FVFG),total hip replacements, total knee replacements, partial shoulder replacements, total shoulder replacements, hip resurfacing, ankle fusions, ankle fusion with grafts, debridements, trabecular screw implants of the hip.
What was the most difficult period after your surgery?
Most of us reported that the worst period was anywhere from two weeks to six months post-op. People who had the FVFG done must remain non weight bearing for quite a long while (6 months). Those who had replacements endured many weeks of painful physical therapy. For all of us, our mobility was very impaired post-op, and the use of crutches, walkers, or wheelchairs was necessary. Stairs presented a huge problem,as did simple tasks such as lifting and carrying objects. Also, driving a car for some of us was not allowed for quite some time.
How long was it before you started to feel somewhat stronger again, or as if you could manage your day to day activities pretty much on your own?
Most patients reported an average time of approximately four to six weeks. A few reported even longer periods of time and a very few reported a time frame as short as two weeks post-op.
If you were a candidate for physical therapy (PT),and if you did have PT, what benefits do you feel you derived from it?
Most reported that range of motion improved much faster. Also: limbs regained strength; PT helped to repair limp, helped to restore body strength as well as strength of operated joint. One person replied: " PT actually relieves the pain and allows me to measure my progress in a orderly structured manner." Another replied,"Just good to move around and feel like I had some control over the healing process, and keeping my body moving. Probably more psychological than physical." All who underwent PT agreed that it helped quite a bit with the recovery process.
If you could have done something differently, (or assuming you might need another replacement or other bone or joint surgery at some point in the future),what would that might have been, or will be the next time around?
"I am going to try a different surgeon (one that is more concerned with leg length discrepancies)."
"Water therapy as fast as possible (It does help a lot)"
"I will insist on PT while in the hospital no matter what. I will also try to build up muscle before hand."
"I would have been easier on myself mentally. This was my 8th surgery in 4 years and I was thinking it would be 'easy' Mentally I was not prepared for how knocked-out I would be afterwards."
"Nix the home health care at least for the first week and spend that time in a quality inpatient facility with intensive PT. (I basically had to take care of myself once I returned home with no PT the first week - yes it was my choice,but I was given few other options and none of those were truly do-able.)"
"I'm not sure there is much I would do differently (except maybe buy a house with a downstairs bedroom and full bath!),but I would certainly be more prepared this time for the pain of the graft site,and the length of time that I'm out of commission."
"I am glad I choose the Trabecular Implant. It was my best option with the least risk and down time. I am glad I had a Ortho who was up to date on the latest treatment for AVN."
We also asked about our general states of health and other medical conditions:
Are you male or female?
Of the people who participated in the poll (about 30 in all),interestingly enough, it was about 50% male, and 50% female.
What age group are you in (expressed in decades)?
Most of the participants were in their late 30's to mid-40's. The next highest group was the 45+ group; thelowest was the under 30 agers.
What other chronic illnesses do you have?
The list was so long that we don't have room to print it all here. However, looking over the results of our poll,it was very note-worthy that the single most often reported complaint was some type of digestive tract problem (GERD, IBS, celiac disease, ulcerative colitis, and Crohn's Disease, to name a few). The second most-often reported illness was migraine or other headaches. That was followed by high blood pressure (hypertension) difficulties. We had two with Hypothyroid, one with Fatty Liver Disease, more than one with Lupus, and a great many with some form of arthritis. Also, a great many of us have suffered bouts of depression and sought medical treatment. There were only 3 of us out of 30 that had no other chronic illnesses that required constant monitoring and/or treatment by a doctor.
Other than chronic pain, what other complaints do you have re: your AVN?
By far, the most often reported problem was sleep disturbances. Also high on the list were depression, changes in appetite, and weight gain. Loss of energy, or lethargy was a big complaint as well. Others reported feeling very isolated, and disruption in family harmony and/or mechanics (due to loss of mobility),and a deep sense of loss. Two reported problems with leg length discrepancies (due to joint replacement surgery).
Did your ON/AVN cause you to have to stop working, or alter your job in any way that caused a decrease in your income?
Almost everyone reported either the loss of their job or career, or at the very least, a reduction in their income Some had to take on a different job, lower in pay and not really to their liking, but they could not afford to stop working altogether. Others are still working, but have used up all of their sick days and are very worried about that. Others just could not continue and had to seek SSDI benefits, which for most of us was a long and difficult battle to get that approval.
We then asked our members about the emotional aspect of dealing with ON/AVN.
We asked them how they felt about having a support group to turn to, and even more specifically, how they felt about our group. The actual questions they were asked were:
1. Do you feel having a support group or system is an advantage or a
disadvantage? Please explain your answer.
2. Do you feel our group is helpful to you? If so, in what ways?
Following are their own answers; some are 'letters from the heart' and others answered the questions 1,2- style:
I find that a support group is very helpful. I was able to speak to people with a condition that was giving me great pain. I feel that I was able to gather as much information so I could decide what procedure best fit me.
Yes, this group is helpful.
1. Do you feel having a support group or system is an advantage or a disadvantage?
Definitely an ADVANTAGE. You can talk to others who are going through the same things that you are goingthrough. They understand exactly what you are talking about. They offer comfort and helpful ways of handling things you might not thought of.
2. Do you feel our group is helpful to you? If so, in what ways?
100% YES, it has been helpful to me. It has helped me to know that what I am feeling is normal, that I am not going crazy. The group offers mental support, helpful ideas on how to make ordinary things easier to do, places to find help, where to look for information, and most importantly to know that you are not out there alone withthis illness.
- Bobbie in VA
When I was first diagnosed in 2000, I had never, ever heard of AVN and had no idea what path I was walking down. At the time, I was diagnosed with it in my shoulders and then it was confirmed in my hips also (since then it's been diagnosed in 5 more joints). I did look on the web and found no useful info. I think I mentioned, that b/c it was pre-google days, I did not findthis group, poor searching skills on my part as I did use Alta Vista in those days. Or maybe I was in too much pain and did not have high speed internet access, I can't recall right now. I was too naive to be scared.
I thought I was getting great medical care and was living in the NY area and had access to the "best of the best," plus my husband was at the time the head of one of the largest most prestigious academic medical centers in NYC. So I expected that I had even more valuable attention. Hah! Shows how little I knew. This disease is so way beyond what I thought it was, we (my husband and I) learned very quickly that we needed to be on top of it every minute and not trust anyone but ourselves. And yes, it seemed like NO ONE ever heard of AVN and most doctors were not very knowledgeable. So I cannot help but thank you again on behalf of all of us for what you and your crew have done for all of us. I'm amazed everyday when I read the postings what I learn and how many people are affected. I'm still finding people that I know that have it in only one joint or so to be unfamiliar with our group and I'm so happy to be able to spread the word of your incredible workon our behalf.
So once again (never enough times) kudos to you!
You really need to ask that question?? You know i feel it is an advantage!! I mean 3 years ago, I really was a lost puppy in the world of AVN. Knew nothing about AVN of the shoulder and most that I found was basically about hips and knees. I did find a couple of articles on the shoulder, but they still dealt with fractures and steriods. Had nothing to do with the type of trauma that I sustained to my shoulder.
But then again, I fall into that small percentage of "odd balls". But this group was full of knowledge. Nan offered me lots of information about AVN of the shoulder. I still have print outs of all that she e-mailed me. (So does my attorney.) Susie Marie was another one that gave me first hand knowledge of what she has gone through with AVN of the shoulder. All the links that are provided, really does help us learn what options are available to us, it's not like the doctors can say - here this is your only option - and that is that - we can go in informed about what is going on inside our bones - whether the doctors like it or not. We are educated about AVN!!!
Barb in Oklahoma
LOL, Marie...you KNOW I felt that way TEN LONG YEARS AGO. W O W! I have felt so honored to be a mere witness to your creativity & ingenuity & DETERMINATION!!!!! You GO Girl! You're AWESOME!
For me it has been a great advantage. I don't post very often but I read every day, and it really helps. Expecially when depressed and in pain. So glad I found this group! I have learned so much! And for info, I just got my millenium crutches and love them. So much improved from the old ones! And Marie, good job on the site. You did a great job!
Great advantage. I read every day, and it helps me focus on the problems that everyone has not just me. I get great compassion here which is a God send. I am happy to have found this group! I have learned so much! thanks!
- hugs, sue in nj
It helped me understand I'm not alone. Also how to cope with pain.
- Jennifer in Southern MD
Most definitely yes. It lifted me out of the depths of my self-imposed silent suffering so that I could finally accept the truth of what to expect from this disorder and move on. And that came about through the resources this group provides including being able to share my story with others and having them share their story with me. In other words, I was and I am NOT ALONE. The help and prayers of others means so much and the opportunity to offer to others a word of encouragement so that they know that they're not alone either is truly a gift. And together we can do great things to help those in the future deal with this disorder - maybe even be instrumental in finding a cure and prevention. I mean, how many times in a lifetime does one have the opportunity to bring about a miracle which will affect the lives of those in the future whom we will never even know. Awesome!