'ENT hurdles' in getting treatment help for ENS

I have copied the following testimonial from a writer at the general discussion at emptynosesyndrome.org. I thought it was a good testimony of what some ENS sufferers have to deal with, the hurdles ENS sufferers face in getting proper help, and the total lack of sympathy by some doctors who should know better. This patient has been through multiple turbinate reduction surgeries, so likely is dealing with some level of ENS. This testimony should trouble every person who reads it. All this patient wanted was to be listened to by a sensitive, caring, sympathetic, ENS-knowledgeable doctor who explores medical solutions and puts her health over the protection of a fellow doctor causing empty nose syndrome. ENTs, please take note: That's all we want. That's why we are overly appreciative of Dr. Houser for his work with ENS because we want help desperately -and need it, too. I have edited and shortened the following to highlight the key points. Here's what she wrote:

Hello All,

I have turned to these boards for some time, and especially recently. This winter with the dry heat in NYC has been dreadful for my breathing. I am in the process of sending my CT scans to Dr. Houser. This is a relief, after five years of being told by ENTs to do more procedures and/or that I was inventing a problem for psychological reasons. (As far as I know, psychological problems do not produce mucus that sticks inside the nose, but until I read Chris' book and found out about this site and Dr Houser's work, I was willing to believe I was crazy and alone.) Thank heaven there is a doctor like Dr. Houser who has a soul and a capacity to listen, care, investigate, and respond to our needs with medical solutions.

...I ended up making the mistake of letting my ENT argue for months for the turbinectomy, although I understood it was all or nothing -- no turbinectomy, no septoplasty -- at least this is how the doctor presented it. I had NO idea what a turbinate was and thought he was fighting for the whole surgery to get approved. Finally he told me things were a go, and I did the surgery. After the surgery, he told me "secretly" that although the insurance did not approve the turbinectomy, he went ahead and did it anyway! I just thought, maybe he is just a nice guy, if cavalier, but I did not expect a problem. Why would he have done this if he did not get paid? Was he trying to be a hero? Why didn't he inform me of anything regarding turbinates?

...It has been five years. I am confused. I had NO idea that the missing turbinates were causing my problem, for real, until about a year ago, or less. That is four years later!....I have been through departments!!!! NYU, NY Presbyterian. My current ENT dismisses ENS but still tries to treat my symptoms, at least. I pretend to his face that ENS is something "my worried mom" thinks I have because she does too much internet research. He completely dissed Chris's book to my face and Dr Houser, whom he appears to know, and right then I knew I had to stop trying to convince all these ENTs. Why are they so defensive of something that is standard practice but does not work on everyone? Is it just about protecting themselves from malpractice suits? I don't get it. It seems that could be avoided by informing patients of the risk of turbinate surgery....

Thank to you all for this lifesaving forum.

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Thank you to the above reader for her comments. Here's my challenging questions to the defensive ENT.

1) Why is it that you acknowledge and know how important the turbinates are, but do not address the resulting symptoms from removed turbinates or potential reconstructive surgical treatment options for empty nose? Research has been published in a medical journal clearly defining and offering a surgical remedy for empty nose syndrome, so ENS is an indisputable fact - not something that can be dismissed.

2) Why is it that you appear to be more concerned with protecting a doctor who is causing harm via turbinate removal than the health of that patient?

3) Why is there no professional standard regarding the amount of turbinate to remove in turbinate surgery?

It would be great if that doctor could answer those questions satisfactorily. As the old saying goes, if you are not part of the solution, then you might be part of the problem. Makes you wonder if this particular doctor is part of the problem or solution. Thoughts?