I appreciate your succinct review of Dr. Groopman's book, 'How Doctors Think', especially the fact that many good doctors make serious errors in diagnosis. As a patient, I found my own "profile" counterpart in more than a few of the patients featured in this excellent book. I also found examples of the faulty thought process by which every doctor I consulted will, most likely, misdiagnose me literally unto death.

One of these doctors is a very compassionate human being and excellent doctor in his specialty. However, I know for a fact that his perception of my physical problem as something not as life threatening as it really is, makes me feel totally hopeless in ever receiving even as much as an adequate physical examination appropriate to my condition.

I know I could never sue this doctor because he is too kind a human being, but I am literally living with a life threatening condition and am disabled to the point where I can no longer perform the necessary daily activities to maintain independent living. I am fiercely independent and was in perfect health when I underwent cosmetic surgery which left me unable to breathe, swallow or close my jaw normally. I have been living with a condition that has become progressively worse until it is now beyond my ability to even seek help from more doctors. It is obvious that I have been "blacklisted" by the medical profession in regard to this condition.

Had the problem been addressed and corrected in a timely manner by a fairly simple procedure, I would be living a happy, healthy normal life today. Instead, prevarication and denial of the problem by a multitude of doctors over the past 6 years has forced me to survive by my own wits, using every possible home-made external "device" to manually "correct" the position of internal structures in the neck which support the floor of the mouth and allow breathing and swallowing adequate for survival. Over 6 years, the internal soft tissue structures that should have been surgically repositioned to allow normal function have weakened and torn, because they were allowed to remain in an anatomically abnormal position.

I was given the option of having a tracheotomy, yet according to my medical records, there is NO DEFINATIVE DIAGNOSIS..

When I walk into a doctor's office holding a wooden spoon pressed to my throat with a degree of force that causes pain in my arm, it seems that the extreme and bizarre appearing methods I have been FORCED to use to survive, are looked upon as some sort of mental and/or emotional derangement, instead of the desperate measures I have been forced to employ to draw my next breath. The doctor says I "look good" and my heart sinks to the floor, as the irony of my situation makes me wish my face were horribly disfigured with scars that would make him cringe. It seems that is what it would take for a doctor to pay attention to my serious INTERNAL injury.

I have had x-rays misread as "normal" as well as modified barium swallow studies proving the reality of my dysphagia. This kind doctor, in the early stages of our doctor-patient relationship, even allowed me to have a second MBS study performed according to a method I devised to show my manual correction improves my swallowing. I expected this to be the definitive evidence of the exact anatomical areas responsible for my "symptoms".
The doctor tells me I should not apply this pressure continually as this will cause skin necrosis (which I have already developed from using a different "device" in the past). When I explain that this external pressure is necessary for me to breathe, he tells me to remove the pressure periodically to avoid necrosis and mentions the option of the tracheotomy, saying that I would not have to bend over at the waist to breathe as I must do when I am not using my hand to "hold the insides of my throat in place" as when I need to use both of my hands. I point out that a tracheotomy would NOT allow me to stand up straight, because I cannot swallow for the same reason I cannot breathe. that the muscle function I am replacing manually effects both breathing and swallowing and is anatomically related to the FACT that it is impossible for me to close my jaw with my head in a neutral, upright posture.. He says "Well, swallowing is another matter"..

Over the course of 6 years, not a single doctor has ever taken his own hands to examine and duplicate for himself the "manual maneuvers" I use which enable me to breathe and swallow, to elucidate the biomechanics of my symptoms. In other words, if I am able to "correct" the position of the internal structures through application of pressure and tension in specific areas, isn't it reasonable to assume that an otolaryngologist with an intimate knowledge of this area of anatomy, should be able to feel which structures I am pressing, pulling, etc., To me, this would be an "adequate physical examination" appropriate to the problem. Am I unreasonable to expect this kind of examination and the doctor's interpretation of exactly what muscles are involved and why the methods I employ allow me to breathe ans swallow normally?

I do not know why I am writing all this as comment to the message posted by Mr. Cooper, except that I know my death from asphyxia due to the injury caused by my surgery, and left to progress while doctors turned a blind eye is nearer than they think. A pulmonologist I consulted called this "positional airway obstruction", which is the closest I have come to getting a real diagnosis. Yet the surgeons I have seen totally IGNORE this report, as they have ignored the swallow study and x-rays interpreted out of the context in which they were taken. The fact that I was only able to keep my head in an upright position for the few seconds during which the x-rays were taken, was not considered or mentioned. The narrowed airway evident in the x-rays was misinterpreted as my tongue "just happening" to be in that position or perhaps I "swallowed" for the film. Neither is true.

A trip to the emergency room was written up as my being "delusional and psychotic" about my breathing and swallowing, when in fact, this doctor had the results of my swallow studies right before him.. positive proof of dysphagia. This ER doctor also opined that my claim of these problems reesulting from a face lift was "untenable" to him.

For 6 years I have been dying right before doctors' eyes, and as I get closer and closer to that event, I simply need to document my experience and hope that this message will surface at some point, and reach the doctors who have allowed this to happen and make them realize they made a lethal mistake..