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.
Chris Martin’s Empty Nose Syndrome Book
Chris Martin’s book, Having Nasal Surgery? Don’t You Become an Empty Nose Victim! Is the best resource out there for ENS sufferers. The author, an ENS patient himself, discusses the function and physiology of turbinates, and describes the experience of Empty Nose Syndrome:
“A perplexing symptom of ENS is the sensation of shortness of air or as though one cannot breathe adequately despite the nasal cavity being wide open, a phenomenon called paradoxical obstruction. Other symptoms include a chronically dry nose, difficulty concentrating, shallow sleep, frequent headaches, increased pulmonary reactivity to volatile compounds or airborne irritants, a diminished sense of smell, thick, sticky mucus, occasional crusting (dried mucus), occasional nosebleeds, sometimes recurrent sinus infections, and fatigue, all of which might lead to anxiety and depression.”
Chris Martin talks about the difficulty ENS patients have in finding doctors who understand our suffering:
“Compare ENS with the following breathing disorders:
- A chronic obstructive pulmonary disease (COPD) sufferer cannot get enough oxygen because of damage to his lungs. But at least with the oxygen tank he feels better.
- A severe asthmatic suffers from less air to his lungs during an attack, but prescription medication or environmental changes help him feel better and he can return to a regular life.
Now imagine a condition where for 24-7 he feels like he is not getting enough air and neither oxygen nor medication helps improve his breathing difficulties. Worse yet, the doctors ignore him because his nose is ‘wide open.’ That is ENS.”
He discusses the relationship between sinusitis, allergic rhinitis, asthma and ENS. He explains mucociliary clearance:
“Healthy ciliated cells beat at a rapid rate of 16 pulses per second and help move the mucus blanket along the mucous membrane to the throat, esophagus and stomach. Stomach acid kills the bacteria, viruses, molds or fungi, the mucus is broken up, and it is ultimately excreted.”
“When functioning properly, MCC happens without our notice. During times of mucosal inflammation, however, the mucous glands secrete even more mucus to fight off infections. The cilia slow down and mucus does not drain properly. For example, one study demonstrated nasal cilia of people with chronic sinusitis and postnasal drip beat at 6 pulses per second, which is much slower than the healthy cilia rate. * Consequently, stagnant mucus remains, bacteria multiply, and infection takes hold. Ultimately, longterm decreased mucociliary flow can make someone at increased risk for sinusitis and even lower respiratory problems such as asthma.”
Chris shares his journey through Empty Nose Syndrome, acquired from a turbinectomy, his research, his search for treatment, and his hopeful perspective.
* Bleeker, J.D., & Hoeksema, P.E. (1971). A simple method of measure the ciliary beat rate of respiratory epithelium. ActaOto-Layrgologica, 71, 426-429.
Dr. Eugene Kern’s Empty Nose Syndrome Lecture
“Empty nose syndrome (ENS), also known as ‘the wide nasal cavity syndrome,’ is a term coined by Dr. Eugene Kern of the Mayo Clinic (1994) to describe a rare and debilitating iatrogenic syndrome of chronic nasal physiological impairment following overzealous turbinate resections in the nose (turbinectomies).”
http://en.wikipedia.org/wiki/Empty_nose_syndrome
There is a growing disagreement that Empty Nose Syndrome is a rare condition. With approximately half a million turbinate reductions being performed yearly just in the United States, and an increasing outcry from injured patients, it is now suspected that injuries may number in the millions worldwide.
Dr. Kern himself saw hundreds of ENS victims during his thirty-year career at the Mayo Clinic. He is now retired. Around the year 2000, he gave a taped lecture on Empty Nose Syndrome to fellow rhinologists:
http://www.emptynosesyndrome.org/kernspeech.mp3
Bear in mind that the number of turbinate reductions being done in the U.S. has increased drastically since the year 2000: http://www.emptynosesyndromesite.com/?p=759
Dr. Kern is passionate in this lecture, imploring his fellow surgeons to be conservative in removing any tissue at all from the nose. He shares the before-and-after-surgery x-rays of his patients. “These patients represent a terrible problem” he says. “This is not an innocuous thing!”
“All of them share the same symptom complex…difficulty breathing, crusting, bleeding, pain, a change in their sense of wellbeing…”
“I had to deal with this medically and emotionally,” he says. He shares records of two patients who committed suicide.
Dr. Kern tells his audience that the nasal mucosa “is the organ of the nose.” He outlines the four main function of this organ: “Olfaction, defense, respiration, and cosmesis.”
‘Please think of it as an organ system, just as you think of the lungs, the liver…the kidneys, as organ systems.” He points out that his Empty Nose Syndrome patients lack cilia, lack functioning mucosa. “When we remove functioning tissue what happens?” he asks. “When we destroy mucosa…these respiratory functions and defensive functions can be significantly compromised. When we convert a nose to a mouth….it’s not aerodynamically efficient…wide open noses do not function…”
“How much tissue can you remove and still have normal function? We know you can remove probably eighty to ninety percent of a liver and still have normal liver function. You can remove a kidney…and have the second kidney and still have normal function. How much nose can be removed? I don’t think we know that.”
He says it took about six years, on average, following surgery, for the residual tissue of the nose to fail, in his Empty Nose Syndrome patients.
“Don’t be a turbinator!” he tells his fellow surgeons.
“You biopsy what’s left and…see squalmous metaplasia. That’s not respiratory epithelium anymore. It’s skin! You can’t have mucociliary transport anymore. It’s gone!”
“How are we gonna treat these poor patients?” he asks.
“Excessive turbinate tissue removal can result in the Empty Nose Syndrome.”
“These patients are nasal cripples…”
“This was for non-malignant disease…”
“Nasal obstruction, crusting, bleeding, recurrent infection, pain, odor, dysosmia and depression.”
“It took 6.1 years…for the functional, residual tissue to fail.”
“Be a conservative surgeon because the sequelae can be serious.”
“It’s skin in the nose now. No more respiratory epithelium.”
Tissue Engineering
Many believe that tissue engineering provides the best and nearest hope to Empty Nose Syndrome sufferers.
“Tissue engineering utilizes living cells as engineering materials. Examples include using living fibroblasts in skin replacement or repair, cartilage repaired with living chondrocytes, or other types of cells used in other ways.”
“Cells became available as engineering materials when scientists at Geron Corp. discovered how to extend telomeres in 1998, producing immortalized cell lines.[citation needed] Before this, laboratory cultures of healthy, noncancerous mammalian cells would only divide a fixed number of times, up to the Hayflick limit.”
http://en.wikipedia.org/wiki/Tissue_engineering
“Cells are often implanted or ’seeded’ into an artificial structure capable of supporting three-dimensional tissue formation. These structures, typically called scaffolds, are often critical, both ex vivo as well as in vivo, to recapitulating the in vivo milieu and allowing cells to influence their own microenvironments. Scaffolds usually serve at least one of the following purposes:
- Allow cell attachment and migration
- Deliver and retain cells and biochemical factors
- Enable diffusion of vital cell nutrients and expressed products
- Exert certain mechanical and biological influences to modify the behaviour of the cell phase”
http://en.wikipedia.org/wiki/Tissue_engineering
In a recent discussion on the Empty Nose Syndrome forum http://guest.6.forumer.com/viewtopic.php?t=3046, a Chinese ENS sufferer offered information about an effort in Shanghai, China to restore turbinate tissue through tissue engineering. According to the study he cites, “The tissue engineered inferior turbinate looked like
normal inferior turbinate.” He goes on to say “they just use Medpor to implant into IT instead of a piece of bone.” (IT stands for inferior turbinate. The loss of inferior turbinate tissue is considered more damaging than the loss of middle or superior turbinate tissue, and more predisposing to Empty Nose Syndrome.) “Medpor is a kind of material produced artificially and is considered with a potential risk to [sic] be extrude, but obviously, Medpor will remain stable size & shape without being absorbed.”
Resorption is a problem with existing methods of turbinate tissue replacement.
The Chinese effort is a step in the right direction. A more wholly natural tissue replacement would constitute a further step, and it appears that the company Acell may have developed one:
“ACell, Inc. has developed a proprietary line of plastic surgery and wound care devices utilizing an advanced regenerative medicine technology. ACell’s MatriStem technology is a naturally occurring bioscaffold derived from porcine tissue. When MatriStem is placed into a surgical site or wound, it is resorbed and replaced with new native tissue where scar tissue would normally be expected.”
“MatriStem Plastic Surgery Matrix is intended for implantation to reinforce soft tissue where weakness exists, including, but not limited to the following procedures: tissue and body wall repair.”
http://www.acell.com/pandr_surgery.php
Stem cells are sometimes used in tissue engineering. They are being used in the Shanghai study. Thus, the two technologies may overlap, and both are part of the field of regenerative medicine.
Advancing Stem Cell Technology
The great hope of Empty Nose Syndrome patients is regenerative medicine, a field involved with the restoration of body tissues. The most promising technology being explored is stem cell technology.
According to this article titled “Stem Cells from Fat – Plastic Surgery’s New Frontier” stem cells article stem cell technology is already being applied by plastic surgeons in the United States.
“There is no doubt that the most exciting frontier in medicine now is the use of stem cells,” the article states. “Stem cells have the power to restore beauty, heal damaged tissues, and the potential to treat and cure some disease.”
“Up until recently the media has largely focused on the more controversial embryonic stem cells. These are stem cells derived from embryos. The potential uses of these cells to cure and treat diseases remain vast, but the controversial source of the cells poses ethical questions which have delayed medical progress.”
“During the past decade, researchers have discovered that stem cells can also be extracted from your own fat tissue. These adult stem cells have the same potential as embryonic stem cells, except for the ability to differentiate into sperm or ova. Unlike embryonal stem cells, stem cells extracted from your own fat are abundant, easily available, and pose no ethical or political controversy.”
“Due to FDA regulations, stem cell therapies to treat diseases are not yet available in the U.S. unless you are part of a clinical trial. In this capacity they are considered to be ‘drug therapy’ and subject to very strict regulation. Therefore, patients not enrolled in these trials are currently traveling outside of the United States to get these therapies.”
The author goes on to explain that stem cell technology can be used in plastic surgery because “these therapies do not fall under the FDA’s ‘drug therapy’ classification and are therefore not regulated as such…”
The stem cells are harvested from the patient’s own fat through liposuction.
The use of stem cells derived from fat was employed in a recent clinical trial in Cincinnati. The trial is reported in The Scientific American article,”Stem Cells from Fat Used to Grow Teen’s Missing Facial Bones”, October 15, 2009: scientific american article.
“Stem cells so far have been used to mend tissues ranging from damaged hearts to collapsed tracheas. Now the multifaceted cells have proved successful at regrowing bone in humans. In the first procedure of its kind, doctors at Cincinnati Children’s Hospital Medical Center replaced a 14-year-old boy’s missing cheekbones—in part by repurposing stem cells from his own body.”
“The technique, should it be approved for widespread use, could benefit some seven million people in the U.S. who need more bone—everyone from cancer patients to injured war veterans.”
And, of course, Empty Nose Syndrome patients. For us, stem cell technology will need to advance to a stage where it can be applied to the creation of both bone and mucosa.
The fact that the technology is now being applied is a reason for hope.
The Stigma of Illness
A friend and I have been talking about the loss of our cachet. We both have Empty Nose Syndrome. We have noticed that people give us a wider berth these days. They know without us even saying anything: We’re damaged goods.
It’s even worse if we talk about it—this would be me to whom I am referring, not my friend. My friend is a generation younger than me, and she seems to have the instinct to be embarrassed about being sick.
I am baffled by the taboo of illness and talking about illness. It is a part of the human condition. Along with other forms of suffering, it is the difficult part. It seems to me we need the company of others most to help us through rough waters. While the current prevailing “wisdom” is that the purpose of company is for having fun. These days, people think that suffering should be conducted discreetly, out of the presence of healthy folk.
Pussy-footing around friends, I try to ascertain if I can talk about my illness. There are only a few to whom I can talk and it is not enough. I have been surprised by the lack of interest in most to whom I have confided. Their collective response has been something along the lines of, “Oh really? Well huh.”
I was recently gifted with insight into this attitude of disinterest when contacting an old friend. I had inquired about another old friend. The response went something like this: “Yeah, I heard all about her health problems, over the years, with a few other problems thrown in besides.” It was obvious that this former friend’s health problems had made her a loser in the eyes of the one who had heard about them. More so, I would suggest, because she had talked about them.
This is mysterious business to me. Frankly, creepy, as in borderline sociopathic. I grew up in the fifties and sixties, and I believe that people cared about each other then. When someone got sick, friends and family responded with afternoon visits, help with child care, meals, laundry and housework. I can’t recall a single incident when illness diminished the value of a friend or family member. While topics like “cancer” and “death” may have been taboo, people with illness were encouraged to talk and were listened to with concern.
In the year 2010, that concern seems to have been directed back toward the self, as in “you’re not going to talk about that, are you?” Waaaaaah. I just wanna have fun. “Hey listen, honey, are you up for a movie?” “No?” “Well, listen, when you feel up for Starbucks or catching a movie, you give me a call, okay, sweetie? Love you. Bye.”
It’s hard to trace what happened to compassion. I suspect the move from one-income to two-income households played a role. Nurturing the sick was a traditional feminine role that got devalued in the change of currency.
I don’t believe that New Age philosophies have done us any favors in this regard. Now, if we’re sick, we’ve brought it on ourselves with negative thoughts, karma, or worse, we have made the choice to be sick. It doesn’t seem to matter that this “choice,” by all accounts, lies somewhere in the unconscious. We are responsible. These philosophies in no way suggest that we are undeserving of compassion, but the philosophers like to suggest that they do.
In spite of my experience that nobody gives a damn, I continue to feel compelled to talk about my illness because it dominates my life. Pain, disability, treatment, research, medical ethics, and efforts to reach out and create a conversation, have become my life.
My younger friend is more accepting of the cultural disdain for sickness. She points out that it’s a youth culture. People want forever youth and they want to live forever. I am not as patient with these selfish attitudes as she. It may be a difference in the times we grew up.
I see it as a waste, this attitude that grabbing all we can is what we’re here for. I believe we are here to develop something lasting for the spirit. We do that by helping one another and by standing up for truth and justice.
Maybe the healthy aren’t interested in talking about illness—particularly iatrogenic illness– and its social, political and spiritual implications. However, those of us who are suffering may find solace or purpose in the conversation.
Pain and Meditation
Two years ago, I was harmed by an ENT who said he was going to remove a sinus polyp. He destroyed my nose and face with unnecessary surgeries. The first year was a torment of pain, breathlessness and mind-bending nasal drought. The second year was an uneven climb out of Hell. Three months into the third year, my skull glows with pain as my cheekbones collapse.
Like many of you, I have Empty Nose Syndrome, an iatrogenic condition caused by the surgical removal of too much turbinate tissue. Turbinates are the inner organ of the nose. They are bone covered in mucosa. For a description of what they look like and what they do, please see A Normal Nose. Empty Nose Syndrome is a horribly painful condition for which there is no cure. The nose feels as if it has been poured full of cement and left to dry. The lungs beg for air. The mind writhes with the body’s discomfort as the body grows exhausted and weak.
The collapse of my face is not related to Empty Nose Syndrome. My particular surgeon not only removed too much turbinate tissue. He also performed a Caldwell-Luc, an obsolete sinus surgery in which he needlessly removed a large amount of bone from my skull.
What do we do when we are constantly in pain? Previously, we may have reached for a bottle of pills. It was harmless enough when the pain was temporary. But what do we do now?
This question has been on my mind. Several times, I have dug out a bottle of Hydrocodone, now over two years old. A few pills remain from the surgeries and the harrowing months after. I recall staring into the contents of that bottle in 2007, frightened. I recall because I’ve been doing it, again. Fear and pain are a potent blend—merciless, irrational. They’ve been at the helm lately, steering my ship into rocky waters. Add to that, rage—because this didn’t have to happen. I didn’t abuse my body. I didn’t drive too fast. I didn’t even get a disease or have an accident. I went to a doctor.
I woke one recent morning, braced for another rough day. God help me, I thought. Then I began to deep breathe, in slow, even measures, the way I learned years ago, from a yoga book. I stayed snuggled under my blankets as my humidifier purred. You can’t do the yogic breathing exactly correctly lying down, but you can do it well enough. I wanted to keep my body as relaxed as possible, in order to convince my mind.
The most successful meditation technique—for me– is a Buddhist one. I imagine myself sitting next to a river. Every thought that enters my mind, I toss into the river. “I hurt.” Toss. “My face…” Toss. “I can’t…” Toss. “I’m mad…” Toss. Every thought is a leaf landing on the surface of the water and flowing downstream.
The thoughts came faster and faster. Or so it seemed. We don’t normally realize how fast thoughts come. No wonder they have the power to batter and bruise. I had not tried to meditate for a long time, and I kept forgetting to toss as poisonous thoughts carried me away. Then I remembered. I kept breathing the slow even breaths. Moments of peace and beauty broke through: A sunlit opening in a wooded glen. A kaleidoscope vision of violets and reds. My body, light as breath, moving through tall grass. I had comforting thoughts: “There is truth.” “There is beauty.” “I can live in these moments.”
It occurred to me, in the midst of meditation, that my heart was too cold. And why should it not be? What I had taken in, through the surgeon’s hands, was the opposite of healing. I laid my hand over my heart, the only hand available, a conduit of Love. I felt the warmth penetrate and thaw.
The clench in my body relaxed. And I didn’t get out the pills that day.
Let Me Hear Your Voice
The last few days, my goal has been simply to get out of my apartment and go for a walk. I didn’t make it today. The pain in my face is excruciating. Looking at it in the mirror is equally painful. The cheekbones are caving in. My nose now looks like a big, honking truck in the middle of my face. Twice in the past few weeks, I’ve taken a Vicodin left over from my unnecessary surgery in order to manage the pain.
Two years ago, a doctor removed vital structures from my nose and a large quantity of bone from my face for no medical reason. And without mentioning it to me.
I’ve seen a number of doctors since this happened. I’ve watched the color drain from their faces as they read the surgery report. “A Caldwell-Luc?!” one exclaimed. “That’s a last resort!” Another dropped the report in my lap as if it had burned his fingers. “No charge for the appointment,” he said to his assistant as he backed out of the room. I was certain the one with a kind face was going to help me. He read the surgery report and quickly handed it back. “He was just trying to help you,” he said.
That one is stuck in my mind today. I called my daughter. “Help me with what?” I asked her. “What was he trying to help me with? Did you ever hear me complain? I was at your wedding two weeks before the surgery. Did I have any breathing problems?”
“No,” my daughter said. “Never. At the time I wondered…then you said it was for polyps. I didn’t know anything about polyps.”
Neither did I. I had never heard of sinus polyps. That’s how much of an issue they’d been in my life. I had seen the ENT for tinnitus—ear ringing.
The last plastic surgeon I saw was willing to do the surgery, but he wanted to remove a fourth of my nose. I ran. I didn’t want anything removed. I wanted things added back. I didn’t realize how much of my face had disappeared. Some more had to shrink away before I accepted the horror.
This was removed from my face: “multiple pieces of flat bone and cartilage, in aggregate measuring 4.0 x 4.0 x 0.2 cm.” I didn’t know until six weeks after the surgery. Then, smothering and in agony, I requested my surgery reports. Later that evening, I read those words. That’s how I found out I’d been maimed by a surgeon who’d said he was going to remove a polyp.
It took more time to focus on the term, Caldwell-Luc, in the surgery report. The term meant nothing since I’d never had a sinus issue or seen a doctor for one. In 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. In other publications, Caldwell-Luc is mentioned as a being an option only in cases of cancer, or possibly, cystic fibrosis. Even in these cases, it is a last resort. It is an invasive and destructive surgery. Why was it a first resort surgery for an asymptomatic patient?
How can this happen? It can happen because medical malpractice has been all but legislated out of existence in the state of Ohio as well as in most other parts of the country. It can happen because doctors cover it up: http://www.patient-safety.com/defensive_documentation.htm.
Does anybody care? Not just about what happened to me, but about the fact that this can and does happen. If you care, please raise your hand. Send me a message or an e-mail: ens311@gmail.com. Tell me your story. Let me hear your voice.
The ENT Business is Booming
Dr. Thomas Kidder wrote, in an article for Current Opinion in Otolaryngology & Head and Neck Surgery, February 2002, Volume 10, Issue1, pp 14-18, “Operations on the nose and sinuses result in the largest number of malpractice lawsuits and the highest indemnity payouts for otolaryngologic procedures. The advent of CT scanning and endoscopic technology has increased the number of such operations performed.” http://journals.lww.com/co-otolaryngology/Abstract/2002/02000/Malpractice_considerations_in_endoscopic_sinus.4.aspx
This warning was issued to otolaryngologists eight years ago. Obviously, a high percentage of that increasing number of patients found themselves worse off following their surgeries. Otolaryngologists could not possibly have remained unaware of this phenomenon. They were, after all, affected by it in terms of both hurting patients and increased lawsuits. If ENT’s were operating out of a concern for patients, therefore, we would expect to see a decreasing number of sinus surgeries performed over the years. This has not been the case.
“There were approximately 200,000 sinus surgeries performed in the United States in 1994” according to the American Academy of Allergic Asthma and Immunology. http://www.aaaai.org/patients/publicedmat/sinusitis/whatischronicsinusitis.stm
in an article titled, “Sinus Surgery Eases Rhinosinusitis Symptoms” published January 1, 2010, Michael Smith, North American Correspondent, MedPage Today, reports “Chronic rhinosinusitis affects up to 16% of Americans, with annual direct costs of $4.3 billion… That includes about 500,000 surgical procedures a year.” http://www.medpagetoday.com/Surgery/Otolaryngology/17751 Thus, over the past 15 years, the rate of sinus surgeries has increased two and a half fold, from 200,000 surgeries a year in 1994 to 500,000 surgeries a year in 2009.
I don’t personally believe that this increase has resulted in more happy campers—unless we are counting the ENT’s who are reaping the profits. They are the ones creating the reports that say patients are improved by these surgeries. I’ve spoken to a quite a few of these patients who are, in fact, devastated. There are over 700 registered members of the Empty Nose Syndrome Self-Help website: http://www.emptynosesyndrome.org/index.html. It is safe to assume that the vast majority of people injured by sinus surgeries never discover the term “Empty Nose Syndrome” and/or suffer injuries that do not meet the criteria. I have read my own post-operative reports and you would never gauge from them, the depth of my suffering and the destruction to my life. No where in my medical records is the term “Empty Nose Syndrome” found though it was diagnosed by several ENT’s.
I have heard many stories similar to mine. A patient saw an ENT for a minor issue. The ENT rushed them into surgery, casually recommending a procedure that sounded as simple and routine as getting a flu shot.
This lawyer describes it precisely on his website: “Sinus surgery may be dubbed a ‘simple’ outpatient procedure, ‘even routine.’ Patients suffering from chronic allergies or sinus infections are opting to undergo outpatient sinus surgery in record numbers. Though sinus surgery is labeled in many advertisements and on Internet sites as ‘minimally invasive,’ this trendy procedure, if negligently performed, can cause serious personal injury.” http://www.damorelaw.com/practice-areas/sinus-surgery-injury.php
I didn’t even have to complain of sinus problems to be herded onto the operating table.
Returning to Dr. Kidder’s warning to otolaryngologists about the serious malpractice considerations involved in sinus surgeries: What have ENT’s done in response to the problem? They have used their political clout to get tort reform laws passed, making it almost impossible to sue them. They have added a statement to patient release forms noting that sinus surgery can make you worse. I thought it was just “lawyer language.” Problem solved. Next…
Medical Malpractice Reform
I prepare a file of information to send to a plastic surgeon. I print out photos of my face taken three months before the surgeries that destroyed it. I print out a page of photos taken over the past two years. Finally, I print a page of photos taken recently. It takes more courage than I have to look at these photos. The first page shows a woman with shining eyes who appears no more than forty, though I was fifty-five. The second page depicts a woman with hollow eyes and cheeks, a deformed nose, jowls, malar bags—a face etched with pain. Some of these photos were taken just six months after the pre-surgery photos. The third page shows the same ruined face, but focuses on the drooping right eye and caved-in cheekbone.
The photos tell just part of the story. A large pile of bone was power-sawed out of my face from behind my cheekbones in an obsolete surgery called a Caldwell-Luc: http://www.entkent.com/FESS.html. The bone that forms the structure around the eye and the cheekbone is caving in, due to a loss of infrastructure, especially on the right. These bones form the upper part of the jaw. Increasingly, my upper jaws do not fit my lower jaws. The pain is growing daily. As well, I suffer Empty Nose Syndrome—nasal dryness, discomfort and shortness of breath, due to excessive removal of turbinate tissue.
My life has veered into a twilight zone—a disintegrating face and a future of ever-increasing pain.
I look at page one and page two of the photos, separated by a mere six months, and I wonder all over again how this could have happened. I saw an ENT for tinnitus—ear ringing. He found sinus polyps, incidentally, on a scan.
Six days later, he destroyed my face and nose with three unnecessary surgeries.
I remember standing in a grocery line a few months after the surgeries, gasping for breath, my swollen face twisted in agony. “What happened to you, honey?” the cashier asked. I told her. Her eyes popped. “You can’t sue him?” she asked in disbelief. “But…but that means that they can do anything and there’s nothing to stop them!”
Exactly. That’s exactly what it means. That’s why we once had a legal system designed to protect patients. Due to tort reform laws, we no longer have that: http://www.mcandl.com/ohio.html . Not only did lawsuits place a check on physicians, they served as a form of redress to the injured patient.
Compensation could have gone a long way toward alleviating my suffering. I have compiled a list of the best plastic surgeons across the country, but I can’t afford to see them. Most local physicians want nothing to do with my case because professional loyalty trumps concern for patients. Some procedures that could counteract the damage are considered cosmetic and are not covered by insurance. More than two years after this life-destroying event, I have had no treatment for the damage to my face. There is virtually no mainstream treatment for Empty Nose Syndrome and I have spent ten thousand dollars on natural remedies. I have not been able to work. My finances are destroyed. I do not know how I will continue to pay for the natural medicines that I use to care for my nose. I also don’t know how I will manage the pain in my jaws and teeth which increases daily. I would like to try acupuncture, massage, and other natural pain management therapies, but I have no resources.
Is this what should happen to a patient who sees an ENT for ear ringing?
There is a lively conversation afoot about medical malpractice reform. Dr. Kevin Pho, KevinMD.com, argues that “injured patients deserve medical malpractice reform.” http://www.kevinmd.com/blog/2009/11/oped-injured-patients-deserve-medical-malpractice-reform.html
Dr. Pho feels that an adversarial approach to patient compensation serves no one. “There are many who advocate caps on malpractice awards as a solution, but this does little to fairly compensate patients more expediently, nor will it make the necessary improvements to patient safety. In Texas, for instance, a $250,000 cap on non-economic damages has made it more difficult for injured patients to seek compensation because lawyers find most claims too unprofitable to pursue.” Ohio shares this low cap on non-economic damages.
Dr. Pho suggests that, “Perhaps we should look abroad for other ideas.”
“The United States is one of the few countries in the world that uses a jury to decide instances of medical malpractice. Liability cases in the United Kingdom, Germany, and most of Canada use specially trained judges instead, who can not only decide cases more quickly, but also in a manner more reliable and consistent than a jury. These “health courts” will speed up the time it takes for injured patients to receive compensation. Additionally, according to Philip Howard, the chairman of the legal reform coalition Common Good, by implementing health courts, information about each [malpractice] incident, would be compiled and disseminated so that doctors and hospitals could learn from their errors.”
One has to wonder how fairly injured patients are compensated by health courts. But anything would be an improvement over the current system in which many victims of medical malpractice receive no compensation at all. Dr. Pho says,“President Obama has acknowledged that changes in the medical malpractice system must be considered with other health reforms, and recently ordered that pilot projects to improve the way we compensate injured patients be implemented.”
Dismepowerment of the Iatrogenically Injured Patient
In 2007, I was seeing an ENT for tinnitus—ear ringing. Dr. S ordered scans and found sinus polyps—a benign condition shared by 30 to 40% of the population. The day that Dr. S read the CT scan, he was inexplicably angry with me. So angry he could not even look at me. “Don’t ask stupid questions!” he barked. “Just listen! Don’t interrupt!” He said he was going to remove some polyps. He did not mention the terms “turbinate reduction” or “Caldwell-Luc.” He said, “We’ll fix that deviated septum at the same time.”
Six days later, Dr. S dismantled my face and destroyed the function of my nose at an outpatient surgery center. I acquired acinetobacter, an antibiotic-resistant, hospital-acquired or nosocomial infection in the surgery. Only severely ill patients are susceptible to acinetobacter. A pile of bone measuring nearly two inches by two inches was drilled and power-sawed out of my face and nose. I lost a significant portion of the inner organ of my nose. The bone structure of my face and nose were destroyed. Soft tissues were inexplicably removed from my face. My nasal septum was shortened, turning my nose into a pig snout.
Everything that Dr. S did was an injury to my face and to my health. Loss of bone structure and soft tissue are major issues of an aging face. As a self-described plastic surgeon, it is not credible that Dr. S removed all these tissues without realizing what he was doing to my face. There was no medical basis for anything that he did. The pre-surgery CT report states that “no significant septal deviation is seen.” I had no breathing problems, had never had a sinus infection and had never been seen by any doctor for any nasal or sinus issue. I had tinnitus which is not caused by sinus polyps. At fifty-five, my face showed almost no signs of aging.
Do I know why Dr. S was so angry with me the day that he ordered the surgeries? I believe I do. Many months after the surgery—while writing a book—I discovered the missing piece of the puzzle in a file.
More than two years later, I have seen some thirty doctors for problems due to the surgeries. I have spent ten thousand dollars on alternative medicine. I have been unable to work and my finances are ruined. My nose is miserable and my face is a remnant of itself.
I was unable to sue Dr. S due to these factors: Tort reform laws passed in Ohio several years ago limited the cap on pain suffering making medical malpractice unprofitable to lawyers: http://www.mcandl.com/ohio.html. An advertising campaign poisoned the minds of potential jurors so that most med mal cases are being lost. In the face of slender odds, I found a lawyer. However, my case never went of court due to the third obstacle to medical malpractice cases. The doctor who treated my condition following the surgeries refused to testify on my behalf.
If the surgical destruction was a shock, the events that followed left me dazed and horrified. I was unable to receive appropriate health care. Antitbiotic-resistant infections went uncultured and untreated. Doctors refused to treat me, treated me as if I were a criminal, and endlessly referred me on. For the most part, they refused to tell me anything about my conditions. Those conditions of which I was informed went unreported in my records. In the place of medical data, there was medical language, twisted and abused, to cover up the truth. Unfounded slurs against my character and mental health were recorded. Throughout this process, doctors shared their spurious claims behind my back, often without any legal basis for discussing my case.
I have contacted every agency charged with the safety and protection of patients, except for, at this time, the Ohio State Medical Board. None of the agencies has helped me or shown any interest in doing so.
What happened to me? Apparently nothing new. My experience follows a blueprint of what happens to patients who suffer iatrogenic—medically-caused—injury. As if the injury is not trauma enough, the medical system, an organism functioning to protect itself, turns on the injured patient. Individuals work together, either consciously or subconsciously, to obscure the iatrogenic injury and turn the spotlight on some manufactured flaw of the patient. “A patient being blacklisted can go from doctor to doctor to doctor without getting diagnosed or treated and never know why,” writes another injured patient: http://www.patient-safety.com/blacklisting_patients.htm.
Usually, according to this writer, the blacklisting is subtle, but: “Sometimes it is one physician blatantly telling another physician to find nothing wrong with a patient, to give no tests that could uncover injuries, and no referrals that could help the patient because anything found could indict a fellow physician.”
“Why would a physician risk his license and intentionally ruin the life of a patient? Well, there’s really no risk. Who is going to report it? And who would believe the report? And who would do anything about it if they did?”
From my experience so far, no one.
