When I went to an Ear, Nose & Throat doctor for ringing in my ear, I ended up with radical sinus surgery and a nose job. I was made a nasal cripple, my face and my health were destroyed. I was shocked to discover that other doctors didn’t care. In fact, they covered it up. And I couldn’t even sue. It could happen to anyone. It could happen to you.
How Much Is A Human Life Worth?
I was reading my own blog the other day, and I was struck by the absence of something. I hear that the writer is suffering a complex of painful symptoms caused by an unnecessary surgery and that the blog is also a protest about faults in the medical system. Detaching myself from the writing, I can easily imagine the writer airing her grievances over lunch with a friend.
Or is it just me? Because the writer is me?
I don’t see the rumpled bed I lie in day after day. I don’t feel the loneliness and isolation. I don’t grasp the shrieking exhaustion, the pain and confusion of facial bones and teeth displaced and a nose disintegrating. I don’t smell the necrosis. I don’t feel the heat and humidity and hopelessness.
I am acutely aware of my separateness from the mainstream today because recently I joined a women’s group. As I listened to each of the women sharing a bit of her life, I sensed the line of demarcation separating me from a normal life. There are no graduations, vacations, plays, musical events, retreats, get-togethers, or plans in my life. None of that “summer is so busy, you know.” I know. It means I have to keep getting up to close the window when another lawn mower starts up. The vicarious normality was a breath of fresh air. But now, I am more acutely aware of my isolation.
I am not sure who reads my blog. I know some of my readers have Empty Nose Syndrome. Some may be doctors. And some may be ENT’s. For these, I want to move the focus of the conversation away from a clinical viewpoint and onto the patient. A botched nasal surgery is not just a matter of dryness, paradoxical obstruction, overly patent airways, and missing turbinate tissue. Many doctors seem not to grasp the scope of disability caused by these physical indicators. A botched nasal surgery is also a matter of missing friends, family and life. It is a loss of pleasure, of activity, of engagement in life. It is a loss of everything human beings cherish: health, happiness, friendship, work, leisure, creativity and love.
In the past two and a half years, I have missed opportunities to visit family in states I have never seen. I have missed a graduation and a wedding. I miss most holidays as I am too sick to do much but lay in bed. Family and friends have retreated from my life as there is so little I am able to do and to give. Potential love interests beat an even quicker retreat once they hear about my life. I have even lost the pleasure of my own company which once was a feast of good books, healthy food, meditation and nature. Not even curling up in bed is a guilty pleasure. There is no pleasure. There is only pain.
Aggressive and unnecessary nasal surgeries are not just medical failures. They are living deaths to their victims. I have often said it would have been a blessing if I had died on the operating table. Any ENT who performs turbinate reductions or other aggressive nasal and sinus surgeries routinely sees the results in his or her office as well. We are not just a parade of damaged noses. We are a parade of damaged lives. It reaches beyond comprehension that doctors who have once brought this devastation, fear not to bring it again.
How much is a human life worth? Surely it is worth more than the fee for a turbinate reduction.
Separateness
I pulled into a parking space at the local Kroger. Just as I was pulling in, a young woman hopped into the car next to mine. She stuck a cigarette in her mouth and lit it. I watched her multi-task, turning the key in the ignition, and talking on her cell phone as the cigarette bobbed in her mouth. For a moment, I was taken back to nearly three years ago, right after the surgeries that destroyed my nose.
One of the painful side effects of having my nose gutted was being suddenly and sharply separated from the rest of humanity. I experienced myself as noseless freak moving about in a sea of happy breathers. I am not normally a jealous person, but I was sick with envy of everyone else’s nose.
I remember receiving my People magazine in the mail. On the cover was a gorgeous, bikini-clad Jennifer Love Hewitt beaming a brilliant smile. She was engaged and about to be married. The only thing I could see was her nose. I had to lay down before I fell down. I was weak and sweaty with jealousy of Jennifer Love Hewitt’s nose. I knew that nobody smiled like that unless their nose was moist and happy. I myself would never smile like that again. It wouldn’t matter if Paul McCartney came calling. It wouldn’t matter if I finally wrote that bestseller. Nothing could ever make me smile like that, again. In fact, love was even out of the question. Love requires a full capacity of senses. Romantic love is an explosion of the senses.
My grown daughter came to visit around this time and suggested a trip to the local video store to stock up on movies. What followed was a session during which I was relentlessly tortured by movies about healthy noses. I don’t recall any of the titles. In one of the movies, there were throngs of men in short dresses. I guess they were gladiators or something. All I really remember is how many healthy noses there were in those crowds–hundreds and hundreds of healthy noses. Why not just throw me a party and make me watch other people eat?
For a long time, one of the hardest things about leaving my apartment was moving among all those healthy noses. Watching a father walk through Target, holding his son by the hand. Watching a mother argue with her children about why they couldn’t have more toys. Watching couples strolling affectionately. People sharing leisure over coffee. Women chatting with their friends. I had once done all of these things. I knew I would never do any of these normal things again, without being distracted by the screaming drought and emptiness of my nose. Empty Nose Syndrome is like living life through a straw. You can’t get very much in because the reception is painfully reduced.
Two and three quarters years later, My ENS has improved. I believe the bones around my nasal cavity have grown inward to close the yawning gap created by a surgeon. I am not normal, by any means. I still spray my nose with saline many times a day. I still irrigate. I still become breathless on the phone. I still suffer. I can go out into the world, without wanting to die from the envy of other people’s noses.
Unfortunately, other iatrogenic conditions caused by the surgeon have come to occupy the space left by the improvement of my empty nose. The pain in my face and teeth caused by an unnecessary Caldwell-Luc has more than taken up the breathing space that would otherwise now be mine. So I am still just as separate from healthy people as I was before. Years of suffering this separateness has slowly lessened the pain. I have come to live with the reality that I will never again travel, fall in love, or enjoy a casual afternoon of hiking, swimming or laughing with friends.
I have become more aware now that there are quite a few human beings who don’t get to enjoy these things. As I was unloading my cart at Kroger’s, I observed the woman ahead of me. A morbidly obese woman with thinning hair, she was confined to a wheelchair. She had a breathing tube in her nose. It was obvious from the pallor of her skin that she was really sick and not just overweight. As I stood there sweating, I thought about how I am not separate from all other human beings. I am a member of the portion of humanity that suffers and it is not such a bad group of people to be among. There is a lot of strength and courage in this group. I watched the sick woman juggle her bags of groceries and oxygen. “Wait a minute,” she said, as the clerks loaded her up, “Where are my hugs?” Both the checker and the bagger hugged the woman with obvious affection.
Just a few short years ago, I would have wondered how that woman could get out of bed every day and face the world. Now I know how.
My Sinuses Are Falling Into My Teeth
I guess I didn’t believe her. The Maxillofacial Surgery resident ordered an x-ray. Then she put it up on the wall and showed me that my sinuses are falling into my teeth. This was several weeks ago. I left angry that I wasn’t given a full facial x-ray. The worst pain is in my cheekbones and temples. The right side of my face is caved in. I wasn’t interested in an x-ray of my teeth.
It took until today for this information to really sink in. My sinuses are falling into my teeth.
Two weeks ago, I was given a root canal of an upper premolar on the right side of my mouth. Afterwards, the pain woke me in the night. I called and was given a prescription for Vicodin. I was upset because, as anyone who reads my blog knows, I don’t need any more conditions requiring pain control. The roto-rooted tooth continued to ache for ten days. I have never had this experience with a root canal before. Does it have anything to do with my falling sinuses?
I was taking a walk just now and I was thinking about the assumptions I held before these surgeries were done to me in October 2007. I assumed that doctors knew what they were doing. I assumed they had a better understanding of the human body than I did.
Based on these assumptions, when an ENT told me he was going to remove some sinus polyps, I assumed I had nothing to fear. Because this was 2007, I pictured the ENT snaking a wire through a microscopic hole in my mouth into my sinus and snipping a polyp, using some form of guided imagery. I assumed that the anatomy of my nose and face would be carefully preserved. After all, this is only common sense. You don’t have to be a doctor to know that drilling giant holes into the facial bones of an asymptomatic patient is crazier than eating glass. You don’t have to be a doctor to know that cutting bone and mucosa out of a healthy nose is dumber than lopping off toes.
What I have learned is that you do have to be a doctor not to know these things. Who would ever have imagined?
I went to an ENT for tinnitus or ear ringing. I had never seen any doctor for any nasal or sinus problem in my life. At 55, I looked like a young woman. I had strong bone structure, smooth skin, a beautifully-shaped, healthy nose. The ENT found polyps incidentally on a scan. He said he was going to remove them. He performed an aggressive and unnecessary septoplasty, an unnecessary Caldwell-Luc, and an unnecessary turbinate reduction. He drilled tunnels through my sinuses.
Afterwards, I was in such horrific pain, I feared what this doctor had done to me. I calmed myself with the knowledge—excuse me, assumption—that he could not have caused me serious harm because there are laws and agencies in place to prevent doctors from harming patients. He would have surely been careful or he would be in trouble. He could be sued. Wrong, again. No other doctors will document that any wrong has been done. In fact, they will not document conditions caused by other doctors. They document that the patient is crazy or had these conditions before the surgery. Being unable to collect damages is the least of your problems. You can’t even get a doctor to treat you. You may as well have leprosy if you’ve been harmed by a doctor.
I no longer have a functioning nose or sinuses. My nose is dry and miserable. I have frequent infections. My face has caved in, more on the right than on the left. My right eye droops. I am in unbearable pain. I have lost a three-tooth bridge and have had numerous root canals. My teeth hurt and they crash together. My face is destroyed. The cheekbones are gone. My face is asymmetrical. My nose is too short and too large for my shrunken face. I have had hundreds of doctor appointments since these surgeries, most of them useless because most doctors will not help me. Before the surgeries, I saw a doctor about three times a year.
This ENT redefined my life. I was applying to grad school when this happened. Now I live in bed next to a humidifier surrounded by nasal products. And my sinuses are falling into my teeth.
The Twilight Zone
It is that magical hour of the day when the sun goes down and the birds sing a little more sweetly. A silvery gold mist lightens the side of the armoire. I enjoy the evening blue of the sky through the window from my bed across the room. This has always been my favorite time of day.
I remember sitting on my back porch savoring this delightful hour with my husband and some friends about ten years ago. I recall the sensations of my body, mind and face, maybe because I took a snapshot of the moment and filed it away. In those days, I felt the surface of my self keenly. I recall the velvet blue sky brushing my face and arms, a warm light on my hair, my legs tangled up in a long cotton skirt. I recall the gathering of friends, the co-mingling of thoughts and feelings, the sense of being right here, right now, forever.
I never considered that the essential sense of my being might change. I thought that I would grow older with the same body—only the age would change. I thought my mind, body and face would continue to evolve along a timeline, the older added on like the rungs of a tree. Before October 30, 2007, when a surgeon cut away parts of my nose and my skull and drilled tunnels through my head, I was at home in my body. Everything fit together. I remember taking a yoga class when I was eighteen, moving easily into a half lotus, an older woman saying, “Her body is made the way it’s supposed to be made.” It was.
It no longer is. A surgeon playing God remade my face and nose, drilling enormous holes into the cheekbones, shortening my nose, narrowing the bridge, removing a portion of the turbinates. I no longer move through the world at one with my body. This recreation is a foreign thing, not my natural habitiat. It is a sick thing, oozing with infection, throbbing with pain, worrying my mind. I can’t relax into the joy of being. My jaws don’t fit. My teeth are misaligned. There’s an unnerving pressure in my teeth due to gums that no longer fit them. The right side of my face feels as if it’s been hit by a baseball bat. This skewing of my physical self jars the weaving of mind and body so that my edges are blurred and jittering.
I remember how it used to be. That’s all I have of the beautiful human being that God created. Sometimes, on nights like this, I take a Vicodin to ease the pain and twisting sensations. I free my mind from the prison of pain created by a doctor who was healing what wasn’t ill but now is. I can no longer experience myself fully. The choice is between pain and numbness plus less pain. I can’t feel the velvet blue of sky on my arms, but I can see and I can remember. It is not the same as living it. The light is dimmer here in the twilight zone.
Pain
I have learned a few things about pain in the past two and a half years. For example:
There is only so much pain that a human being can take. One day of intense pain takes a certain toll on the mind-body system. One hundred days of intense pain takes an exponential toll on the mind-body as each subsequent day, there are fewer resources for coping than there were the day before.
Different kinds of pain exact different tolls on the mind-body. Right now, I am coping with five kinds of pain, four of them due to unnecessary surgeries done to me by an ENT. I have facial pain, a deep insistent aching in my cheekbones and temples. This pain wears me down, on a daily basis, and makes me want to cry. Then there is the grating sense of tooth and jaw misalignment. It feels as if my face has been broken and left to heal in the wrong position. The aggravation is worse than ten thousand flies buzzing around my head. For this pain, I am continuously stifling a primal scream. A third kind of pain is the irritating, bone dryness of my nose. To this pain, I feel an eternal sense of slavery, a never-ending spraying, oiling, irrigating, and moisturizing, done with a feeling of drudgery, like tending a sick patient whom I do not even care for. The fourth kind of pain is tinnitus or ear ringing. Before I went to the ENT, I could not imagine anything worse. The ear ringing was, in fact, what led to the office of the ENT. The ear ringing would be an insistent reminder that I am not normal and can never again live a normal life if it were not for all the pain caused by the ENT which has forced this horrendous suffering into the background.
Another thing I have learned about pain is that the last people on earth who will show any sense of comprehension or sympathy for my suffering are doctors. Doctors do surgeries like this Caldwell-Luc on patients who go to them for ear ringing. Doctors somehow do not expect that drilling giant holes into the faces of asymptomatic patients will cause them any pain or future difficulties. If such patients present with horrific infections after being mutilated, their infections are denied by doctors or blamed on herbal or other natural remedies the patient may have used to try to heal them: Liars and Thieves Or the pain and infections may be blamed on a personality disorder. For example, I was accused of being histrionic: Personality Disorder. Have another look: Caldwell-Luc Should the term “histrionic” be placed beneath that photo? How about this: “This is the photo of a histrionic patient.” Certainly, the giant holes drilled into the patient’s face have nothing to do with subsequent infections, pain or crying.
Certainly, those massive holes drilled into my face have nothing to do with the pain and collapse of my face two and a half years later. Why, those holes would be the last thing that would cause any sort of pain or facial collapse. Those holes are a “medical procedure.” That stuff’s good for you. Just don’t get any honey anywhere near your face or your face might collapse and you might end up in horrible pain like me. You might even become histrionic.
Six months after my face started melting and two oceans of tears later, I have an answer as to what is to be done for me: Drugs. I need lots and lots of drugs. My tooth and jaw misalignment are of no concern. There is no physical problem causing my pain. My pain is not related to the fevers, sweats and nausea that began at the same time. It’s not related to the ongoing collapse of my face or the misalignment of my teeth and jaws. Of course, it’s not. If it was, a doctor would be responsible and lots of doctors’ patient notes and medical decisions over the past two and a half years would appear questionable. Therefore, my pain and facial collapse have nothing to do with those holes drilled into my face. Or with the five antibiotic-resistant infections I’ve had in those holes since they were drilled. My pain and facial collapse have to do with another mental condition which I don’t yet have, but which is currently being arranged by the medical profession. It’s another “medical procedure” bearing another antiseptic name–it’s called “pain management” in the medical industry. Elsewhere, it’s called drug pushing. I am about to become a drug addict. And as everyone knows, you can’t believe anything a drug addict says.
A few years from now, those giant holes in my face won’t even be a footnote in my medical record, or it will be assumed that I drilled them into my face myself while high on airplane glue. And this is the worst kind of pain of all–The Lie that replaces who you are.
Caldwell-Luc
This is an image of the Caldwell_Luc surgery.
http://www.exodontia.info/files/Caldwell-Luc_Approaches_to_the_Maxillary_Sinus.jpg
This is the surgery that was done to me on October 30, 2007 by an ENT whom I was seeing for tinnitus–ear ringing. It was done on both the left and right sides of my face. I was not told this was going to be done.
The pre-surgery MRI and CT reports note no polyps or any disease on the right side of my face, except for “a small ovoid soft tissue mass…in the right ethmoid air cells…” and “mild mucosal thickening…in the right maxillary sinus”—noted in the CT report. I had never seen any doctor for any nasal or sinus issue.
After the surgery, I was desperately ill. I had acinetobacter infection in my sinuses. I had never before had a sinus infection in 55 years of life. Acinetobacter is an antibiotic-resistant, hospital-acquired infection to which only very ill patients are susceptible.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2870905/
My sinus mucosa had been ripped out. I was raw and infected. My inferior turbinates had been removed and I was smothering every minute of every day due to the condition Empty Nose Syndrome.
“Before surgery on an inferior turbinate is undertaken, a trial of medical management is mandatory.”
“When taken to its extreme, the sequela of this lack of respiratory mucosa leads to a nasal cripple.”
http://journals.lww.com/co-otolaryngology/toc/2002/02000
I presented to otolaryngologist, Dr. F., at a large medical center in my city six weeks after the surgery. I was in agony, shaking and sobbing, gasping for breath. I was given antibiotics, but the infection was not cultured until I returned in much worse condition 5 weeks later. In fact, I was not cultured then, either. Dr. F had me finish a second round of the wrong antibiotic first, telling me that he could not squeeze me in for a culture until the following week. Obviously, he could have cultured the infection right then and there in his office.
I recently acquired this record from my first appointment with Dr. F: “The patient is status post sinus surgery on October 30, 2007, and presents with continued symptoms. The risks and benefits of the procedure were explained in detail and she elected to proceed.”
How likely is it that a patient with no nasal or sinus history elected to proceed with that?
On the Patient History form I filled out on the day of my first appointment with the ENT who did this surgery, I reported visual, cardiovascular, bladder, and immunologic symptoms due to a “CO exposure.” I also reported a long history of immunologic problems. Under “Respiratory, asthma, emphysema, lung,” I reported “none.” There is no other heading under which to report nasal or sinus problems and none are reported. On a separate page for reporting ear problems, I report “tinnitus.” This also is the only word on the referral form from my GP–tinnitus.
“Surgery is reserved for confirmed chronic sinusitis, per history, physical and CT as well as those who have not responded to medical therapy.”
http://www.urmc.rochester.edu/smd/RAD/neurocases/Neurocase238.htm
I took a letter to Dr. F from my GP: “She has never had a diagnosis of chronic sinusitis. She had never been seen here for any sinus problems prior to November 2007.” Dr. F would not take the letter from my hand.
“The Caldwell-Luc operation was first described in the late 1890′s.”
“The main complications associated with the Caldwell-Luc procedure include oroantral fistula (breakdown of the gum incision with communication between the mouth and sinus), rare osteomyelitis, infraorbital nerve injury with associated hypesthesia, injury to the tooth roots and tooth discoloration. When the mucous membrane of the antrum is totally removed, the sinus eventually regenerates nonciliated epithelium. It is unable to clear mucus as a normal ciliated sinus would. It is common for mucoid pus to occur postoperatively as the sinus is no longer able to clear itself of bacteria and mucus.”
http://www.urmc.rochester.edu/smd/RAD/neurocases/Neurocase238.htm
‘The Caldwell Luc operation is also carried out on the maxillary sinus. It is more radical than the intranasal antrostomy. The sinus is opened by through a cut between the gum and the upper lip, above the canine tooth. A hole is chiselled or drilled through the cheek bone. The lining of the sinus is scraped out. A large intranasal antrostomy is also made. The Caldwell Luc operation was done for almost 100 years, and can give good results for severe chronic maxillary sinusitis. It can cause severe interference with nerves to the teeth and face. One third of patients having Caldwell Luc surgery will have permanent numbness. Many will have painful sensitive nerve endings in the teeth or face. Caldwell Luc surgery is rarely done nowadays, but still has its place occasionally.”
http://www.entkent.com/FESS.html
According to Peterson’s Principles Of Oral and Maxillofacial Surgery, Volume 1, page 307, published in 2004, the Caldwell-Luc is referred to as “obsolete”: Google Book Link.
Two and a half years after the surgery, my face is caving in on the right, the side for which pre-op scans showed no sinus disease. I have been in unbearable pain for the past six months. My teeth are crashing together. I am unable to access appropriate medical care due to patient blacklisting.
Liars and Thieves
My grandfather had a wonderful, sarcastic sense of humor. Thirty years after his death, memories of his dry commentary bubble up from my subconscious. Sometimes these recollections coincide with my own observations of life. “Liars and thieves” was a grandfather original. My grandfather said it to raise eyebrows. Referring to the ladies’ auxilliary or a meeting of church officials: “Oh, that bunch of liars and thieves.”
This same phrase has been moving through my thoughts lately. However, for me, the irony is missing. People, assumed by the world to be good, have indeed turned out to be liars and thieves. Liars about what happened. Thieves of my health, my life, the truth, and my good name. These people are doctors.
October 30, 2007, I saw an ENT for tinnitus. He performed three unnecessary surgeries on me: a septoplasty, a Cadlwell-Luc and a turbinate reduction. In all, this was removed from my skull: “…multiple pieces of flat bone and cartilage, in aggregate measuring 4.0 x 4.0 x 0.2 cm.” Also, a lot of soft tissue. Dr. S told me only that he was going to remove some sinus polyps. He said he would “fix that deviated septum at the same time.” I had never been seen by any doctor for any nasal or sinus issue.
The pain that followed this butchery is indescribable. Two and a half years have passed—years filled with pain, suffocation, chronic infection, sickness, pain medications and antibiotics, facial collapse, tooth loss, and bone disease. The years have also been filled with efforts to get help from doctors which have often resulted in further harm. Perhaps the most devastating harm is the lies written into my permanent medical record which have created an irrevocable lie about who I am. The lies have made it impossible for me to access appropriate medical care.
A few months ago, while at the medical center, I requested my medical records. Among these records is one from Dr. F, the first doctor to whom I turned for help after the surgery. This record is dated December 18, 2007. It was my first appointment with him. Dr. F makes this statement: “The patient is status post sinus surgery on October 30, 2007, and presents with continued symptoms. The risks and benefits of the procedure were explained in detail and she elected to proceed.” There are several shocking things about this record: One is that I had ordered these records at least twice before and I had never received this one. Another is that Dr. F and I had no conversation which could have been misconstrued to support this statement. On the contrary, I had sobbed throughout the appointment, begging Dr. F to explain why this had been done to me as I had never had any sinus problems. I had said over and over that Dr. S had said only that he was going to remove some polyps. What this record makes crystal clear is Dr. F’s intentions regarding my case from our first meeting.
And yet this record is absurd. My primary care physician wrote a letter documenting that I had never been seen for any nasal or sinus issue in six years with her office. In 55 years of life, I had never complained to any doctor about any nasal or sinus issue. The referral slip from my GP for the ENT consultation with Dr. S says “tinnitus.” How likely is it that a 55-year-old patient with NO nasal or sinus history was told that she may experience nasal dryness and destruction, pain, infection, facial changes and collapse, osteomyelitis, suffocation, and other negative results from a surgery and she said, “Fine, I have no symptoms, but you go ahead and do that.” How likely is it that 55-year-old woman with no symptoms agreed to a bone amputation from her face? “The risks and benefits of the procedure were explained in detail…” In detail!
Since the surgery, I’ve had these infections in my sinuses and eyes: acinetobacter, staphyloccus aureus, klebsiella pneumonia, MRSA, and enterobacter clocae. I had never had a sinus or eye infection before the surgery. I’d had one documented infection in the twenty years before the surgery.
I saw an Infectious Disease specialist at the medical center. He is still a resident. I saw him twice. I would not have seen him the second time except that I had him confused with his supervisor. His supervisor on the first visit was intelligent and wise, though the notes—apparently written by Dr. H–do not reflect this.
I saw Dr. H in August 2009, following almost two years of eye infections which commenced shortly after the surgery of October 2007. Dr. H writes, “The patient states that since her surgery she has had almost constant eye inflammation which…is only improved by putting honey in her eyes…A swab was done of her eye which has grown MRSA and e. Cloacae. She was prescribed tetracycline but never filled the prescription.” Dr. H left out the list of antibiotics I had tried for these infections which had failed. And the fact that my Integrative Medicine GP and his own supervisor had given their blessing to my trial of Manuka honey for the eye infections. My GP had prescribed the tetracycline as a back-up for me to use if the honey failed. I had just begun the honey treatments after nearly 2 years of eye infections. Dr. H’s supervisor had told me to proceed with the honey treatments as taking more antibiotics was not feasible due to my large number of antibiotic-resistant infections. The honey did, in fact, work where the antibiotics failed.
Worse, are Dr. H’s notes from my visit of February 2010, when I saw him for what is almost certainly osteomyelitis: “[She] is a 58f with a history of chronic rhinitis, sinusitis, conjunctivitis…She was seen in August re: chronic conjunctivitis which was felt to be due to chemical conjunctivitis.”
In other words, I created all these infections with my use of honey. The implication is that performing an unnecessary facial bone amputation on a 55-year-old patient is a wise medical decision. However, the use of medicinal honey might cause horrors such as chronic, untreatable infections, horrible pain and facial collapse. There is no medical evidence to suggest that this has ever once occurred, while evidence to suggest that it has occurred from facial bone amputation does exist. What is not explained by this bizarre logic is why I never caused myself terrible infections until after an unnecessary bone amputation from my face. The doctor’s scenario is also not possible since I had just begun the honey treatments but I’d had eye infections for two years—ever since the facial bone amputation. The facts do not support his agenda so he rearranges them.
What is also not explained (though not known by this doctor) is how I managed to raise two healthy children on a regime of natural medicines with no incidents of infections or other ill effects. They were seen by specialists when necessary. One had an appendectomy. One had a tonsillectomy. Neither suffered negative consequences from the use of natural medicines. Neither did I suffer any negative consequences from my use of natural medicines, in my entire adult life, until after an unnecessary bone amputation from my face.
Patient History
Two and a half years ago, I went to an ENT for tinnitus. After going on a fishing expedition looking for things he could operate for, Dr. S found sinus polyps on a scan. Thirty to 40% of the population has sinus polyps. Dr. S said, “We’ll fix that deviated septum at the same time.”
I knew about the deviated septum because all four times I had seen Dr. S for tinnitus, he had examined my nose. And all four times, he had said, “You have a deviated septum. As I would learn after the surgeries—I did not, in fact, have a deviated septum. At least I did not have one before the surgery.
Dr. S was angry with me the day that he ordered the surgeries. He never so much as looked at me. He shouted at me. Six days later, he did irreparable harm to my nose and face, performing the most aggressive and damaging nasal and sinus surgeries ever devised—on an asymptomatic patient. I literally had no nasal or sinus medical history. Not one complaint or sinus infection—in 55 years of life. Dr. S contended in his patient notes that I had a history of chronic rhinosinusitis, but oddly, my GP knew nothing about it. She went through six years’ worth of patient records and confirmed that I had never been seen for any nasal or sinus issue in her office. I believe that Dr. S initially intended to do some unnecessary surgeries. Then something happened to change his mind.
After these surgeries—A Caldwell-Luc, a septoplasty which twisted and shortened my nose, and a turbinate reduction—I was in such agony that I wanted to die. I had acinetobacter, an antibiotic-resistant hospital-acquired infection to which only seriously ill patients are susceptible. Curiously, Dr. S wrote on all three of my post-operative visits that I had atrophic rhinitis. This was just weeks after the surgery. I wonder how he knew since it is not possible to determine if a patient has atrophic rhinitis until four to six months following surgery.
The ENT I saw after the surgery was primarily concerned with burying the crime. I knew nothing about “the old boys’ network.” I took his casual air as a good sign. But when he said he would see me again in five weeks, I nearly hit the floor. Five weeks? I could barely survive five minutes. I couldn’t breathe. I couldn’t sleep. The pain was out of this world.
Then I saw my GP. “I got this letter…from your ENT,” she said. She pulled it out and held it before my eyes. “Maybe you should see someone else.” The words turned upside and traded places. What I was reading made no sense.
“She felt better for a few weeks but since then she has been having persistent difficulties.” I had not told him I had felt better after the surgery. I had told him I had never had any sinus symptoms before it. I had told him I had not felt this horrible pain until a week or two following the surgery.
“The surgery was prompted by an abnormal MRI showing chronic sinusitis. She was found to have polyps during the surgery and this was confirmed on her pathology report.”
I felt like an assault victim lying in a pool of her own blood. Finally, help had arrived and my “rescuer” had stepped on my face as he walked over me.
I told Dr. F, again, that I had never had a sinus condition. I took him a letter from my GP: “She has never had a diagnosis of chronic sinusitis. She had never been seen here for any sinus problems prior to November 2007.” Dr. F would not take the letter from my hand. This became a pattern. Anything Dr. F did not want in my patient file, he would not take from my hand. Dr. F wrote in a letter: “[She] has chronic rhinosinsusits…She had surgery performed in the past due to the severity of the condition.” Dr. F rewrote my medical history to accommodate the assault committed by his colleague.
I saw another doctor. Dr. F canceled my next appointment without notifying me. Most other doctors treated me poorly. Several mentioned that they had received letters or phone calls from Dr. F.
Last December my face began to collapse. It had started a year earlier, but things got serious in December 2009. The pain was horrific. December through April, I cried several hours every day. I saw the last ENT plastic surgeon in my city whom I had not already seen. The right side of my face was visibly smaller than the left. My right eye drooped. “I’m a plastic surgeon and I don’t see anything,” he said. He sent me to a slew of other specialists all of whom had no findings. The allergist told me I had no inferior turbinates.
A month ago, my teeth started crashing together. I can’t eat or speak without my front teeth hitting. Even with my mouth closed, I feel the misery of the misalignment. I am in horrible discomfort from Empty Nose Syndrome, pain in my face and the twisting of my facial bones and teeth.
Will anyone help me? Or will the next report read: “Patient has a history of facial pain and deformity.”
Disbelief
I don’t understand how this can be happening. Half a million turbinate reductions are being done yearly in the United States. Worldwide, the number is in the millions. Some percentage of these counter-intuitive nasal surgeries results in the condition called Empty Nose Syndrome Since it happened to me in October 2007, I’ve met dozens of ENS victims in cyber space. We are all engaged in a desperate, daily struggle for the strength to cope with mind-bending nasal discomfort, pain and breathlessness.
We exist in a state of ongoing shock and disbelief no matter how long ago this may have happened. Every day we wake up to lives forever altered by something that simply cannot be true: A doctor did this to us. A doctor cut functioning, healthy tissue out of our noses. In many cases, we were not told this was going to happen. In most cases, the issues for which we saw the ENT were minor—allergies, stuffiness, snoring, sleep apnea and ear ringing, to name a few.
According to Doctor Eugene Kern, founder of the term “Empty Nose Syndrome,” we all “share the same symptom complex…difficulty breathing, crusting, bleeding, pain, a change in [our] sense of well-being…” http://www.emptynosesyndrome.org/kernspeech.mp3
I would add to this complex of symptoms—disbelief. Acquiring Empty Nose Syndrome is a bit like experiencing an alien abduction. Your whole sense of reality is challenged. You cannot believe that a doctor did this to you. You cannot believe that any doctor thinks this is a good idea. You cannot believe that any intelligent person thinks this is a good idea. Before this happened, you thought that doctors were intelligent people. Ah yes, let’s just hack bone and mucosa out of the nose, rip out that pesky immune system, get rid of that extraneous organ of breathing. Hand me the chainsaw, nurse!
You can identify an Empty Nose Syndrome victim by his or her expressions of disbelief: “Did you even think that doctors did that?” “It’s like medieval times, isn’t it?” “Did you think you had to ask if he was going to cut bone out of your nose?”
I will always remember the first shock waves. I woke in the night about ten days after the surgery to the sense of my nose having been replaced by a dry, burning gulch. I did not know that bone or mucosa had been removed from my nose. A tight fist of fear closed around my heart. In such moments, one clings for dear life to one’s beliefs about how the world works. It was out of the question—of course—that the doctor had caused me permanent harm. It was simply a terrifying—but temporary—side effect of the surgery. It could not be anything else. How I struggled to calm myself in those dark hours. I didn’t know about saline spray. I had never even used a nasal spray. I dipped my fingers in water and kept moistening my nostrils. It didn’t do any good.
As the days passed without improvement, my shock and disbelief grew. This could not be permanent! What kind of crazy, mad scientist would turn a blessedly comfortable nose into this?! Certainly not a doctor.
So I asked him, “Is this dryness temporary?”
“No,” he said, “It’s permanent. Your nose will always be drier because it’s more open, now.”
Excuse me? Was he suggesting that he had intended to do this to me? Invisible flying saucers circled my head. I concluded that I must have heard him wrong.
“The dryness,” I repeated. “Will my nose always be this dry?”
“I believe I answered your question,” he said.
And so my disbelief became a permanent condition. As it is for every sane person who encounters Empty Nose Syndrome. Including doctors. “I had to deal with this medically and emotionally,” Dr. Kern says in his lecture. “This was for non-malignant disease…” http://www.emptynosesyndrome.org/kernspeech.mp3
How can this be happening?
What can we do to make it stop?
Attn: Medical Schools and Medical Departments
I want to know what surgeries were performed on me October 30, 2007 when I went to an outpatient surgery center to have sinus polyps removed. I left several hours later with a different face. According to the surgery report, I was given a septoplasty, a Caldwell-Luc surgery and a turbinate reduction. I had never seen any doctor for any nasal or sinus problem. I had been referred to the ENT for tinnitus.
The first change I noticed was a smaller and shorter nose. The bridge of my nose was narrowed and the septum shortened. My nostrils were pulled up. The bulb was deflated. One plastic surgeon noted ”palpable osteotomies along the nasal bridge,” while other plastic surgeons and ENT’s have said this does not appear on CT scans. I am not sure what would appear. The surgery report notes that “anterior-to-posterior dissection was done through the back wall of the ethmoid infundibulum through the basal lamella through the posterior ethmoid system.” This was done on both sides. I wonder if bone could have been removed from my nasal bridge during this process. I was distraught about my nose and tried to pull it down and stretch it. This has resulted in an oversized bulb, still pulled up. A pre-surgery CT scan notes that “no significant septal deviation is seen.” I acquired a nasal hump in the surgery. I have been told that there is now an “S” curve in my septum. The tiny bones in the bridge area of my nose were exposed. Soft tissues as well as bone were removed from this area. I acquired sunken eyes and malar bags in the surgery.
According to the surgery report, my nose may have been detached from my skull during the surgery. It is noted that an “osseous-cartilagenous incision with the nose attached to the face was done.” A plastic surgeon stated that my entire nose was tipped upward in the surgery. Caldwell-Luc was done on the right, according to the surgery report, because “severe mucopolypoid disease was encountered.” The pre-surgery MRI and CT reports note no polyps or any disease on the right side of my face, except for “a small ovoid soft tissue mass…in the right ethmoid air cells…” and “mild mucosal thickening…in the right maxillary sinus”—noted in the CT report. The right side of my face and my right eye were damaged after the surgery. I did not notice until some of the swelling and infection cleared up that the right side of my face is now significantly smaller than the left. The right eye droops. About a year after the surgery, an ophthalmologist noted that the structure around the right eye was “shallow.”
I noticed a change in my forehead weeks after the surgery. Horizontal wrinkles appeared on the left side. My forehead had been previously smooth. According to the surgery report “polypoid material that emanated from the frontal sinuses was cleaned out.” Vertical wrinkles appeared between my brows, possibly due to the narrowing of the bridge. I noticed that the skin on my forehead was loose whereas previously, it had been tight. Several months after the surgery, a plastic surgeon wrote in a consultation report that “she believes her forehead has come down.” This was news to me. I went to the mirror and saw it for the first time. In photos taken by another plastic surgeon, the dropped forehead was apparent. Something was removed from my forehead, but I don’t know what. My forehead which was always large, is becoming increasingly foreshortened.
I noticed right away that the fullness of my face was missing. Wrinkles appeared next to my mouth. I noticed jowls whereas before the surgery, I’d had none. A dramatic change is apparent in dated before-and-after photos. I noticed that my cheekbones were reduced in size. By one year after the surgery, it was apparent that my face had become misshapen. The whole right side of my face is now much smaller than the left. This was visible to the first ENT I saw after the surgery as he mentioned to me several times that the surgeon had removed much more material on the right even though I’d had no disease on the right. My right cheekbone aches and continues to cave in.
In all, this was removed from my nose and face: “…multiple pieces of flat bone and cartilage, in aggregate measuring 4.0 x 4.0 x 0.2 cm. Also present is some gray mucoid soft tissue, in aggregate measuring 2.0 x 2.0 x 0.6 cm.”
I have been told that I have no inferior turbinates by several doctors. Others have said I have some tissue remaining. The ENT who performed the surgeries noted “atrophic rhinitis” on all my post-op visit reports. I would like to know what surgeries were performed and what was removed. I would like to know how my facial measurements have changed. I have pre and post-op CT scans, MRI’s, and good pre and post-op photos. I have dated video of my face 2 weeks before, 5 months after, and 2.5 years after the surgery. I would make an excellent project for medical students. Please contact me at ens311@gmail.com.
