The hard part for me to accept about having ENS is that it is basically senseless. Aggressive surgeries go orders of magnitude beyond simply alleviating nasal congestion. If we lived on a planet where we were all breathing air that had the viscosity of pancake syrup then perhaps 10mm wide holes through your nose would be perfect. On this planet, for air, 2mm gaps are enough.  It is also even harder to accept when aspects of these largely optional and discretionary surgeries go beyond limits that are set and agreed to by patients.

Since there are no standards for nasal surgery and there is currently still no universal agreement by doctors of exactly how the nose works, informed consent needs to be taken seriously for aggressive nasal surgeries. The process and it’s risks should not be minimized and “soothed over” to try to convince patients to agree to a surgery. ALL procedures should be discussed and agreed to.

Here are some final simple statistics that argue my point:  I have had 5 nasal surgeries! The first 2 removed tissue and I felt worse after both. The first one caused me to seek a second one which made things even worse. The next 3, I had material put back in and I felt better after every one of them! I also had injections of filler and felt better after those too. Counting injections, the final score is 8 to ZERO for adding tissue vs removing tissue.

Last, I really do think that a surgically caused condition should not be costing patients their life savings trying to get help and causing extreme hardship for their families. ENS victims are already suffering physically and mentally. Since this is clearly 100% caused by surgery, somehow, providers of these surgeries should have a program set up and funded, perhaps by a small insurance fee on each and every nasal surgery in order to cover instances of failure. This is responsible prudent and humane behavior. If the incidence of ENS per nasal surgery is really as low as doctors claim then this shouldn’t cost much RIGHT????

ENS should also be officially recognized by the government as a real disability. Many have lost their jobs and can no longer function. I have been in meetings where I almost yelled out “I can’t take it anymore”! It is impossible to concentrate when it feels like you are being jabbed in the brain behind your eyes. There is the pain, then there is also the odd suffocating sensation in another part of your brain that feels like you are dying. Sleep deprivation is enough by itself. Most ENS victims have been forced to live life as best they can without help. This IS a real disability worse than many “accepted” and acknowledged disabilities. I could perform my job easier with no legs than I could with ENS.