Most doctors claim some rather insignificant odds at getting ENS. For a conservative operation, I would agree! With total and sub-total turbinectomies the chances are obviously far higher. I will share my thoughts as someone who has not only personally experienced years of extreme physical and mental torture, but as someone who also experienced more than a few stages of partial recovery which has allowed me a vantage point to KNOW not guess.
First, ENS is not digital, meaning it is not ON (you have it) or OFF (you are fine). I have experienced a very smooth gradation of symptoms over the years as it came on and got worse. After I got help I saw some symptoms recede and lessen in severity as well which makes the connection undeniable and measurable. Looking back, many early ENS symptoms exactly mimic general pre-surgery type complaints such as obstruction or the “feeling” of obstruction. “I can’t breathe through my nose” etc. This is a key insight which means that it is well possible and highly probable that many negative effects of nasal surgeries go unrecognized by doctors and even patients themselves for years. Other effects on sleep can be subtle or be extreme over time. The amount of suffocation sensation can also be barely noticeable or extreme. The feeling or sensation of obstruction can be subtle or extreme. Since some ENS symptoms can take years to develop or worsen it is HIGHLY probable that by that point in time that subtle changes over years will seldom be attributed to a turbinate surgery 5 to 8 years prior. It’s not until things begin to literally hurt that it is finally obvious.
My general doctor tried attributing my sluggishness and breathlessness to the simple fact as he put it, that I was getting older. I was starting to feel like my 86 year old father who had smoked and had emphysema yet I was in my 40s. One day as a cold was setting in, I felt super human for the early stages of my cold. I walked up 3 flights of steps that had caused me trouble every day with ease. I had worked the whole day and still felt OK. Shocked, I got on an exercise bike and I peddled for 10 minutes or more whereas every other day 1 minute would almost cause me a heart attack. Clearly more was at play here than simple aging and I knew better. Since a lot of patients are not very physically active, many would not notice hits to their pulmonary function, especially spaced over years. Many would not attribute worsening sleep years after a surgery to the surgery. Everyone says that you don’t sleep as well when you get older and so on.
The next proof for me came during the NFL Super Bowl 2011. I felt so weak I was having trouble doing anything. For the first time ever during the day, I wore my CPAP mask while I watched simply so I could breathe some humidified air. After an hour, I noticed that I felt better. I got up and squatted up and down 10 times while wearing the mask and I was not out of breath. I wondered how many athletes have had total turbinectomies and “been OK”? It is known that the lungs need the air we breathe humidified in order for good oxygen transfer. The nose accomplishes this by heating the air we breathe to just under normal body temperature and humidifying it to a level of 98% humidity by the time air hits the throat. It is a simple fact of engineering that a larger surface area of wet mucosa tissue will more quickly and more evenly heat and humidify the air we breathe in one quick pass as compared to a surgically altered nose with far less surface area.
Was a Pro basketball player able to run up and down the court all day long after a TOTAL turbinectomy just as before? Do we know things like this? I would like to see that. Please show me! I hiked mountains with little effort prior to the first surgery. Afterward I was light headed, dizzy and had to sit down on a hike. Early on I took easier hikes. Eventually I couldn’t hike at all. By 2011 flat walking around a pond with my family was too much for me. I was on the ground out of breath.
How much data do we really have? I have no doubt that most “average people” claim a benefit to these surgeries and probably sleep better too but first, how many of those had “aggressive” surgeries? And of the more aggressive surgeries, how many are TRULY better functioning human beings when PROPERLY measured not only after surgery but years later? More importantly, how many would be just as good, or perhaps far better off with an SMR than a lazy sub-total or complete turbinectomy? My point is that I am sure the negative effects of the more aggressive nasal surgeries are widely under reported.
I just flew to Chicago last week. If there was even a 1% chance that the plane would crash would I get on? Would you? What are the chances of a plane crash these days? In 2006 (when I had my surgery) it was estimated by David Ropeik at Harvard University that your chances of dying in a plane crash were 1 in 11 million. I like my odds and I fly a few times per year. Dr. Steven houser estimated a 20% chance of developing ENS after a Total Turbinmectomy. Would you get on that plane for a 20% chance of crashing? Next Moore/Kern at the Mayo clinic noted that 214 out of 242 cases of confirmed Atrophic Rhinitis 166 had developed secondary to nasal surgery and 95% of those had undergone a Turbinectomy. Atrophic Rhinitis is a pretty bad thing in itself and has many similar symptoms to ENS. These odds are very high in my view and certainly warrant mentioning as a part of a proper “informed Consent” for anyone still doing total or sub-total turbinectomies.
There have been many studies over the years regarding turbinate surgeries but most have limitations either in sample size, time period of follow up or what was actually even measured. For most, the simple question of solving obstruction: “can you breathe more air through your nose post surgery?” is a rather low bar to declare scientific success upon. I pass that test. I would personally like to see sleep studies, and tests of pulmonary function before surgery, after surgery and 5 to 8 years after surgery before I declared a “scientific” success.
I have heard that one of the reasons given that few doctors warn their patients pre-surgery of either of these conditions is that they consider the chances too low to bother to mention. I disagree and think that “Informed Consent” as the law states, should give patients enough information for them to make their own INFORMED decision starting with the basic functions of the nose. I suggest that anyone considering nasal surgery spend the time to read the tutorial here: http://ensassociation.org/about-ens/ens-in-brief/ and quickly assess their own understanding of the importance and functions of the nose prior to surgery. I also suggest that you FIRMLY discuss and agree to limits in writing prior to any surgery.
Looking back again, I had many ENS symptoms very early on but sadly it was only many years later after things got far worse that it finally became obvious. I wasn’t warned about ENS back then so I didn’t spend time imagining I had something that I read about. I was just trying to live my life. I was almost passing out while cooking dinner. I found myself waking up many times per night with something getting worse and worse so I found myself reading on-line at 2AM, 4AM etc. suspecting everything. I was actually not even worried about ENS after I first read about it because I was told by both doctors that they were merely “trimming a little tissue” and these people after all, were “EMPTY”. This kept up and eventually one day I saw on an Empty Nose Forum: http://guest.fr.yuku.com/ that some of them could “feel cold air hitting the back of their throat”. That was the moment that I knew I was destroyed because I remembered experiencing that too and thought it was odd. All of these odd things I had been feeling finally added up and I didn’t like the answer.
During my long search for answers some doctors have tried to imply that reading about ENS can make someone “think” they have it (hypochondria). I can assure everyone reading that it found me. I didn’t find it. I have even seen some doctors who try to suggest that some people are “pre-disposed” to getting ENS because they are depressed. To me this is complete hogwash. If you were an unhappy and depressed person, with a bad job or a bad marriage before, you will be exactly the same afterward only you’ll have far worse problems because you will be sleepless, anxiety ridden and suffocating too.
After this recent article about a suicide because of ENS: https://www.buzzfeed.com/joeloliphint/is-empty-nose-syndrome-real-and-if-not-why-are-people-killin?utm_term=.yc8eoW1ka#.vxKeKk5Nv I still saw a doctor implying that the outcome was because some are simply “predisposed to depression”. My old boss was fond of saying: “Sounds like excuses”. These measurable symptoms come to you whether you are happy or not. I had a great life with a nice wife, a really neat 3 year old girl, a good job and a nice house but at times I still wasn’t sure I could live with these symptoms. I WAS happy. I had everything to live for and was not depressed yet I myself began to question life going forward with ENS.
Lastly, I have heard some doctors say that perhaps some people are “poor healers”. I recently cut the side of my finger open and severed a nerve to my finger tip. It was numb for about a month and it slowly healed to normal. I also had an Ear surgery due to conductive hearing loss. It was a “Stapedotomy”. I healed just fine after that too. This time I read about ear surgeries. I looked in forums. I found a doctor who came recommended and I asked a lot of questions. I can hear really well now. I wrote the doctor a glowing on-line review and letter of thanks and I almost take it for granted every day. Yet I had a nasal surgery and spent the next 10 years of my life suffering and educating myself about the nose, culminating in learning to computer model something as simple as breathing.
These excuses are perhaps keeping doctors from taking a harder scientific examination of their own “accepted practices”.