Wednesday, April 9, 2008

CPAP forum and ENS Awareness

I've noticed some people coming to this blog from the following CPAP forum:

While I appreciated the attention brought to empty nose syndrome at this forum, some of the comments made at this forum really made me realize the number of obstacles ENS is up against in raising awareness. Unfortunately, I have ran into these obstacles quite regularly due to widespread lack of knowledge on ENS. Thank goodness for the Internet because, if it were not for the Internet, ENS would still be a totally silent problem and doctors would still be mum about it. Because of the Internet, they are forced to respond and take ENS more seriously, and ENS sufferers can correspond with one another more readily. Lines of communication threaten dictatorships. My book might not have been as successful as it has been, either.

So let me reply to the CPAP forum at this blog. I'd post directly on the forum, but rather than create my own username and password, I thought it would be easier to reply here. If anyone wants to reply to me, they can reply to this blog. I do need more comments at this blog ;)

One of the posters wrote the following myth: "Ignore all the dry nose syndrome warnings, that is rare and can be avoided by following suggestion #1." Suggestion 1 was to go to an experienced, conservative ENT. Here's my reply: Dry nose syndrome ("rhinitis sicca") is a term that seems to downplay the significance of ENS. Many people have dry noses as a temporary complication after nose surgery, but doctors might prefer us confuse a mild, short-term dry nose with something far more serious known as ENS. ENS has not only the long-term complication of dryness, but often many serious symptoms as well. Secondly, the poster claims ENS is rare, another false claim made by doctors who would rather just have us be quiet and disappear. Primary atrophic rhinitis is rare. ENS, sometimes known as secondary atrophic rhinitis, is not. And that's a fact. I had a book signing locally so I learned of many ENS sufferers in my area who have it as a result of turbinate surgeries by a well-liked doctor, not the one who did my surgery. I am aware of other very well-known doctors who are causing ENS as well. I, too, would think it was rare if I did not have it or my book signing. As do most people in my area....although now I know that it is possible hundreds in my immediate area have it. With 400,000-500,000 turbinate surgeries performed each year in the US, it stands to reason that more are suffering from ENS than just a few rare. Many likely have ENS, but don't know it. Their symptoms might be more mild than mine, however.

Another poster commented: "I feel very sorry for anyone who has empty nose syndrome - it is horrible. However, ask your surgeon about it. Mine said it was caused by surgeons reducing the turbinates down to nothing. He said most surgeons are now well aware of it and are careful to leave appropriately sized turbinates." ENS sufferers want respect, not sympathy, but I do appreciate the concern. However, your doctor was wrong in suggesting it is only caused by surgeons who reduce the turbinates to nothing. While it is true that reducing the turbinates down to nothing does cause ENS and doctors are more aware of ENS and conservative than they used to be even just 10 years ago, there is still great ignorance about ENS among doctors and patients, and some patients are still dealing with ENS from surgeries in recent months......Turbinate surgeries where either part or full turbinates are removed, the middles and/or inferiors, can cause ENS. I have corresponded with someone who had just 40% of her inferior turbinates reduced, and she has been experiencing harrowing symptoms. Or consider in Dr. Houser's newest research article, "Surgical Treatment for Empty Nose Syndrome," he describes ENS-Type, which is where the turbinates seem fully intact although previously operated upon, but the patient is still experiencing ENS.

Don't get me wrong, I'm sure many doctors would still like us to believe ENS is rare and only happens when an extreme amount of the turbinates are removed, which is really the means to protect a profitable business. Nasal surgery could often be avoided if the patient knew enough strategies to reduce the size of the turbinates through natural means, allergy treatment, proper diet, hydration, saline irrigation, etc.....

As an aside, go to, search for "empty nose syndrome" and watch these video testimonials. Mine will be posted soon. There are four posted, including one from "Kathy Esckilsen" but 5 others have made videos and hopefully they will be posted soon as well. It shows some testimonials from ENS sufferers; they are revealing and powerful. I look forward to seeing many more in the coming days.