Monday, July 7, 2008

3 Effective Ways Empty Nose Sufferers can raise awareness of ENS

Read the blog post entitled 3 goals for ENT specialists:

Read the blog post entitled Press Release: Having Nasal Surgery? Wins Award in National Book Contest

Now, onto my blog post entitled 3 effective ways ENS sufferers can raise awareness of ENS.

Some people with empty nose syndrome (ENS) want to see awareness of ENS increase among the general public and doctors alike. I hope this article provides food for thought on three avenues to make that happen: medical journal articles, medical malpractice lawsuits, and media attention.

ENS is a tragic condition that results from too much turbinate removal during nasal surgery. The turbinates provide numerous functions including heating, humidifying and filtering air, as well as providing airflow resistance to the lungs and directing airflow in the nose in such a way that air strikes all regions of it. When they are removed in attempt to open up the airway, the nose is no longer able to provide these vital functions.

The tragic aspect of ENS is that it is caused by medical error and, on the flip side, that it is fully preventable. Yet the startling fact is that few among the general public seem to know about it and doctors are not overly eager to publicize a problem they created. So ENS sufferers tend to suffer in silence and radical turbinectomies continue to be performed. Consequently, some ENS sufferers not only want publicity, but treatment from a medical community that does not offer many answers. Make no mistake that there has been a significant increase in public awareness of ENS with large thanks to the Internet, as thousands of sites discuss ENS at present, whereas a google search for "empty nose syndrome" in 2003 might have turned up fewer hits than you have fingers. But there is still room for more to learn about it. Many laypeople still have never heard of the condition.

Before ENS sufferers take a real stab at ENS awareness, though, I believe it is important they are feeling somewhat OK - they must take care of themselves first - and are knowledgeable about ENS. The problem is some want more awareness but then leave the ENS scene once they are finding some relief, and consequently do not contribute to ENS awareness.

So let me take a stab at what I believe are three effective avenues to pursue increased awareness of ENS:

1) Medical Journal Articles
2) Medical Malpractice Lawsuits
3) Media Attention

1) Medical Journal Articles

The first method, medical journal articles, is perhaps the most critical and effective method for increasing awareness of ENS among ear, nose, and throat (ENT) specialists. Yet it is perhaps the one area in which ENS sufferers have the least amount of control. We need doctors to publish more articles that are willing to cite the term empty nose syndrome and accurately describe the severity of the condition. While there has been at least 100 years of controversy surrounding total inferior turbinectomies in the medical literature that suggests it causes late-onset atrophic rhinitis or rhinitis sicca, too many doctors continue to ignore the warnings. Many still perform subtotal or partial inferior turbinectomies and many, if not most, perform total middle turbinectomies. Why? Surely money is a reason and so is a reluctance to admit malpractice. But more than that, there are no studies that effectively prove that turbinectomies cause ENS. But this can change.

Doctors can push for a study that shows a clear statistical link between turbinectomies and the devastating symptoms that follow. ENT doctors, for example, could petition a major medical organization such as the American Academy of Otolaryngology or the American Medical Association to perform a long-term follow-up study of groups of patients who have had turbinectomies. We the patients are helpless in this respect, but doctors can demand it.

Yet I would be remiss to suggest we ENS sufferers are totally helpless when it comes to reaching the medical community. My book, Having Nasal Surgery? Don't You Become An Empty Nose Victim! has been read and well-received by top medical professionals. And I'm only a patient. In addition to face-to-face discussions with medical professionals, we the patients can make our voice heard to the American Academy of Otolaryngology by writing a letter, with signatures from doctors, to demand that a position statement with respect to ENS be developed that clearly states what turbinate reductions are likely to lead to ENS and which ones are not, and defining our condition clearly, as well as summarizing what surgical treatment options are available for ENS sufferers, such as Alloderm implants.

2) Medical Malpractice Lawsuits.

Frankly, I would prefer that it would not have to come to this. Hopefully doctors would adopt sound practices that avoid ENS, and I know many do. Yet still too many continue to perform surgeries that lead to ENS and this practice must be stopped. I must acknowledge that lawsuits are a vehicle behind change, as they could mandate in a shorter amount of time a change in law and practice among doctors. I am aware of several lawsuits throughout the United States and abroad that have taken place in recent years because of ENS, as well as two lawsuits to mind where the ENS sufferer won the case, although neither went to a full trial. I refrained from discussing lawsuits in my book lest some ENS-interested doctors might be overly distracted by it, turned off to ENS and not wish to help. Yet the sad reality is that too many doctors have not changed on their own; change is a slow, gradual process but when the stakes are this high (some will become ENS victims), change could not come quicker.

3) Media Attention.

Frankly, ENS demands more attention and the media can bring our condition to the general public faster than anyone else. Many ENS sufferers, new to wanting to raise awareness about this horrible condition, think of pitching Oprah on ENS. While it is a noble suggestion and Oprah could wield great power for helping these hurting people, and I admit to having tried it myself many times, we probably should be more aggressively pitching our local news stations where we have a better chance of being heard.

Unfortunately, the news media has been slow to pick up our story, because they view it as a minor issue affecting a small populace, although nothing could be further from the truth.

Or, in some instances, the news media caters to the medical community who is paying them large sums of money to run stories that highlight the benefits of nasal surgery. Take Global News Ontario, for instance, a Toronto-based television station that was planning on airing a story about the benefits of nasal surgery, specifically turbinate reduction surgeries using coblation-assisted technology (one of the safest types of nasal surgery). I was contacted by an intern at the station who ran across the website about a month ago and she thought the story on nasal surgeries would benefit from hearing from those who have dealt with the unpleasant aspects of nasal surgery. I let her know how great it would be for the news media to present a balanced story on nasal surgery, which would enhance their credibility among viewers. I also let fellow Canadians know of this opportunity. When I followed up with this intern via a phone call, she informed me there was a "huge" response from ENS sufferers and that "all of a sudden" two stories came up that were demanding her immediate attention, which effective put the story on nasal surgery on the backburner. While that may be true, I surmise she probably had pressure either not to run that story, or to not allow viewers to see our side of the story. She said she would contact me if they decided to run the story. But I haven't heard from her. And I'm not surprised.

Yet I still believe there is hope for media interest. If you are thinking of pitching the media, in addition to making a small video on youtube for empty nose syndrome (a must-do so the media can watch a critical mass of ENS sufferers), which I encourage all ENS sufferers serious about making a difference to do, think about 1) what type of media you hope to pitch, and 2) what message you hope to send. You need to plan carefully, and expect rejection. I have many times. But I have also had some local newspapers run stories on my book, so I have enjoyed some relative success with respect to media awareness on ENS. Here's my suggestion: don't worry too much if the traditional media does not pick you up. Focus on the media most likely to listen. Develop a relationship with someone in the media and know what types of stories that person is working on. Then show that person how the story of ENS ties in nicely with their stories. I would personally suggest to try to secure media attention through 1) high traffic Internet blogs 2) radio stations and 3) newspapers. Keep in mind television stations are often more comfortable airing information that has already been presented in the radio or newspaper, and you have greater control over what is presented in the radio or newspaper than on television. So if the television station picks up the story, great. If not, don't sweat it. It's good to aim large, but to think realistically and small by focusing on the local news, which could ultimately end up becoming a national news story.

When approaching the news media, it is important not to play Mr. Nice Guy. It is important to show them why ENS is newsworthy and important, and how it could attract viewers or readers. Emphasize how terrible and severe ENS can be. Emphasize the large number of sufferers - it is possible that the low millions suffer from ENS in America alone, and thousands could become ENS victims each year. Cite a list of symptoms. Encourage the media to ask the tough questions: why are doctors not required to follow a protocol that mandates certain preventative treatments, such as saline irrigation and allergy treatment, prior to recommending nasal surgery? Why have doctors not developed a position statement on what turbinate surgeries are safe versus which ones might cause harm? Lead them to the answer: Does it have to do with money? Fear of malpractice suits?

If the media were to explore these questions, they could do a ton of good by not only holding the medical profession more accountable, and having many viewers thank them in the process, but any patient who is considering nasal surgery - and that is a sizable percentage of their readership or viewers - can make a more empowered and informed decision about nasal surgery, which will lead to improved outcomes.

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