| "How will AVN impact my life?" |
What impact will AVN have on my life?
What having AVN means to a patient……
This is one question that comes up all the time: How is ON/AVN going to affect my life from this point on?
Usually, when a person first hears the words ‘osteonecrosis’, or ‘avascular necrosis’, it is like hearing words
spoken in a foreign language. As understanding begins to take hold, a very unsettling feeling begins to invade
the mind. Just what is this strange disease going to mean to me six months from now, a year from now, or five
years, ten years, or more?
First, let’s examine ON/AVN (I will shorten that to simply ‘AVN’). It is a disease of the bones that causes them
to die. Actually, “disease” is the right word when taken as ‘a departure from the state of good health’, but it is
not the same as an ailment that can spread via germs or other microbes throughout the body. If a person is
fortunate enough to get just one site of AVN in his skeleton, then he is fortunate, indeed. However, AVN can
occur in multiple joints in the same body with each site being a new and separate occurrence. Unfortunately for
those patients, life becomes far more complicated. There is also the rare person who comes along with a very
small necrotic ‘spot’ on one of his joints or bones, and whose AVN clears up on its own. It is the body’s nature
to replace dead cells with new ones, and in fact, it happens daily to all of us. With an ailment such as AVN, the
death of cells usually is far too rapid and too intense for the body to make up the deficit quickly enough. The
problem is that pain is usually not present until the disease has been going on for a while and becomes well
established. And so, the patient who hasn't been correctly diagnosed early on enough is most often left with a
joint or joints that is/are severely affected.
The real problem with AVN is that it differs so much from one person to another. The concept is the same: that
is, bone cells die due to the blood supply to a joint or bone being compromised, but the ‘after effects’ can differ
widely from person to person. And, there is just no real way to predict what those outcomes will be.
"Will my AVN continue to worsen?"
“Will my hip (knee, shoulder, ankle) collapse, and if so, when?”
“Will I get AVN in my other joints as well?”
"How do I know what surgery is right for me?"
“Will this [whichever] surgery stop the AVN for good?”
“Will a joint replacement last me for many years, or will I have to have another one done?"
“Will I ever be able to face a day or night without intense pain?”
“What if I need surgery but can’t afford it? What will happen to me then?”
“Will I be able to return to a more normal life, or not?”
All of those questions above are ones we are asked over and over again, and the best thing we can tell people
are these three things:
1. Find the best, most knowledgeable and experienced doctor/surgeon you can to treat you
2. Learn as much about AVN as you possibly can, and then specifically about your own case and how it applies
to you.
3. Be your own best patient advocate, now and forever more.
So, how does AVN, with so many variable and unknowns, impact our daily living? You would have to come to
our message board at our Yahoo community site to get first-hand accounts of the different ways in which AVN
can disrupt people's lives. We hear from people in all age groups, from the parents of kids with AVN to the
Golden Agers, and all ages in between. Each age group has their own particular worries and concerns, and for
all of us there is the financial worry. AVN is not an inexpensive condition! For most of us, one type of surgery
or another is our only option for some kind of pain relief and mobility restoration, and as you might expect,
medical fees are not economical. Many people lose their ability to provide for their families and then have to
battle a system often for a few years, just to get the benefits they’ve already earned and now deserve. Some
have to leave school and ‘rearrange’ their entire life’s plan on a moment’s notice. Still others have worked an
entire lifetime, hoping to enjoy their golden years but now have to think in terms of selling their homes or
other accrued assets in order to afford and cope with their health care.
It is very difficult to present AVN as a condition here on the Web, without scaring people too much. Yes, it is a
serious condition, but it is not fatal. For most of us, it represents a life-long battle with pain and immobility and
continued medical care. For some, the luckier very few, it is a bump in the road to be overcome, and then it is
back to life-as-per-usual. For the rest of us, AVN impacts our lives emotionally and financially as well as
physically. It is a disease fraught with challenges that one just cannot imagine until he or she has it.
Alarmingly, it appears to be on the uprise today, according to the NONF, with more than 20,000 newly
diagnosed cases each year in the US alone.
This is one disease where knowledge is power. The more you know, the better the decisions you can make for
your health care. Hiding one’s head in the sand is not the way to approach AVN, that much is for sure! Is it
scary? Yes. But, is it do-able? Yes, for many of us, it is. It takes becoming your own best patient advocate and
learning all that you can about AVN to get a re-grip on your life. Having a doctor or team of doctors and
surgeons who really know what they are doing (and that means being very knowledgeable about AVN and the
latest, newest data on it) is of the utmost importance, as time is not on our side.
How will AVN impact your life? To me, getting AVN means it’s time to face facts, to dig in and get involved,
and in many ways, to become far more mature in one’s thinking and perspective on life. We have to learn to
stop looking at life in terms of what we’ve lost, and start thinking of it in terms of what we can get back, or to
effectively use what we have left. Even a small success is a huge one, and no where is this more appreciated
than in dealing with a disease such as ours.
For further discussions on this and related topics,
please join our organization and our Yahoo Community site.
The ON/AVN Support Group Int'l Association, Inc. Box 118 - 8500 Henry Ave. Philadelphia, PA 19128 Email: avninfo@avnsupport.org |
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Disclaimer:
The web pages and message boards at our site are for informational and entertainment purposes only. Material placed on any page or message
board does not necessarily reflect the views of Osteonecrosis / Avascular Necrosis Support Group International Association, Inc. (“ON/AVN
SGIA, Inc.”). The information on our site is provided with the understanding that we are not engaged in rendering medical or professional
medical services or advice.
We assume no responsibility for any choices that you may make for your own medical care. Information included in a message board should
not replace necessary medical consultations with a qualified health or medical professional to meet your individual health or medical needs, or
those of your loved ones. What we share here on our site is from members’ experiences and personal opinions only and is not to be used as a
substitute or to replace your own doctors’ medical advice. You are urged to consult with and to abide by your own doctor(s) medical advice.
We do not verify the information placed on any message board on our site and, therefore, cannot verify or judge the merits or lack thereof, of
any information, suggestions, ideas, opinions, or advice.
Neither ON/AVN SGIA, Inc. nor any ON/AVN SGIA, Inc. agents or representatives make any representations with respect to the contents hereof
and specifically disclaim any implied or express warranties of merchantability or fitness for any particular usage, application or purpose.
On our site, we prefer to base our message board discussions on only FDA approved treatments, medications, procedures, medical
guidelines, etc. If a treatment, medicine, procedure or medical modality is not FDA approved then we ask you to please find another resource
where you may discuss same.
Materials copyrighted by ON/AVN SGIA, Inc., may be downloaded for personal use only.
By accessing our site, you agree to hold ON/AVN SGIA, Inc., its assignees, licensees, owners, officers and directors harmless from any loss,
claim or damage arising from your use of any of the information and ideas contained on the site, including following suggestions or advice
posted on the message boards/web pages.
The web pages and message boards at our site are for informational and entertainment purposes only. Material placed on any page or message
board does not necessarily reflect the views of Osteonecrosis / Avascular Necrosis Support Group International Association, Inc. (“ON/AVN
SGIA, Inc.”). The information on our site is provided with the understanding that we are not engaged in rendering medical or professional
medical services or advice.
We assume no responsibility for any choices that you may make for your own medical care. Information included in a message board should
not replace necessary medical consultations with a qualified health or medical professional to meet your individual health or medical needs, or
those of your loved ones. What we share here on our site is from members’ experiences and personal opinions only and is not to be used as a
substitute or to replace your own doctors’ medical advice. You are urged to consult with and to abide by your own doctor(s) medical advice.
We do not verify the information placed on any message board on our site and, therefore, cannot verify or judge the merits or lack thereof, of
any information, suggestions, ideas, opinions, or advice.
Neither ON/AVN SGIA, Inc. nor any ON/AVN SGIA, Inc. agents or representatives make any representations with respect to the contents hereof
and specifically disclaim any implied or express warranties of merchantability or fitness for any particular usage, application or purpose.
On our site, we prefer to base our message board discussions on only FDA approved treatments, medications, procedures, medical
guidelines, etc. If a treatment, medicine, procedure or medical modality is not FDA approved then we ask you to please find another resource
where you may discuss same.
Materials copyrighted by ON/AVN SGIA, Inc., may be downloaded for personal use only.
By accessing our site, you agree to hold ON/AVN SGIA, Inc., its assignees, licensees, owners, officers and directors harmless from any loss,
claim or damage arising from your use of any of the information and ideas contained on the site, including following suggestions or advice
posted on the message boards/web pages.
Coping with AVN,
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Editorial June 2007
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