A Call to All ENS Patients

•February 4, 2015 • 1 Comment

This was sent to me by an ENS patient:

For all the ENS patients. We have hope to cure ENS now, but we need everyone to be active. Dr. DAi, the top scientist in China is investigating the number of ENS patients. If the number is large, it will be possible that Chinese Academy of Sciences will launch the research of ENS treatment and get findings from Chinese government! Now Dr. Dai is collecting information of ENS patients. Everybody please send your information to 315782918@qq.com.

The information should include:
Your email address
Your computed tomography before and after surgery
The history of surgery
The photo of nasal endoscopy diagnosis
History of treatment
Current syndromes

Please share this information with all the patients that you know, and and encourage them to send their information to the email address.

From a Chinese ENS patient

Dr. Dai: http://sourcedb.cas.cn/…/db/200907/t20090721_2130961.html


2014 in review

•January 2, 2015 • Leave a Comment

The WordPress.com stats helper monkeys prepared a 2014 annual report for this blog.

Here’s an excerpt:

The concert hall at the Sydney Opera House holds 2,700 people. This blog was viewed about 19,000 times in 2014. If it were a concert at Sydney Opera House, it would take about 7 sold-out performances for that many people to see it.

Click here to see the complete report.

Dr. Houser ENS Podcast: Form Vs. Function

•December 5, 2014 • 2 Comments


Dr. Steven Houser on Empty Nose Syndrome

•November 16, 2014 • 1 Comment


Letter From a Suicidal ENS Friend

•November 15, 2014 • 9 Comments

I was operated on and permanently injured by an ENT. I was naive and trusted him not to hurt me. He froze, cut, and resected two vital organs in my nasal cavity called inferior turbinates. My ENT destroyed these organs to the point where they no longer function. As a result, I now average 3-4 hours a night for the last 6 years.  I feel like I am suffocating 24/7. I no longer produce mucous to humidify the air for my lungs.  I have chronic anxiety, depression and a complete loss of well-being.  I cannot focus or concentrate.  My condition has progressed to a point where I am completely disabled.  Despite my efforts, there is not a cure for my condition.

Before this happened, I never even heard of turbinates. They are the key organs in the nasal cavity, shaped like small fingers. Their functionality is necessary to well-being and a good quality of life. They perform many functions, including humidifying, heating and cooling the air for the lungs. They are rich with neurons that send signals to the brain regarding gas exchange, information about sleep, and provide well-being. As a result, I have a crippled nose, sinuses and nasal cavity, that do not produce mucus, do not sense airflow, and do not function. I have severe maxillary nerve damage as well.  The nerves that line what is left on my mucosa are damaged so I feel like I am suffocating 24/7.   My subconscious mind cannot sleep through the suffocation. As a result, I sleep a few hours a night and never feel refreshed.  When I am awake, I experience what only can be described as torture. My anxiety and level of well-being are terrible. Humans are hard-wired to experience anxiety when they feel like they are suffocating.  All of the pleasurable sensations that come with breathing are absent.  My sinuses are dry.  The quality of my life is gone.

I saw Dr. Steven Houser in Jan of ‘09.  He diagnosed me with ENS. The condition is nicknamed Empty Nose Syndrome because, when you look at a CT scan, the nasal cavity appears empty. This silly-sounding condition is chronically debilitating. Dr. Houser mentioned it was a potential suicide condition. There have been numerous suicides due to ENS, as documented by Dr. Eugene Kern, formerly from the Mayo Clinic. My good friend, John, with whom I spoke every day for a year, had ENS and ultimately took his life a few years ago. I realized I was having suicidal thoughts because the symptoms exceeded my ability to cope with the condition. I had a friend in college who took his life. I remember thinking to myself–what could be that bad that he would go to that extreme?  I did not understand it then, but I understand it now. I hate that option. I want to live. I do not want to take my life anymore then the next guy. I do not agree with suicide on principle. It is a terrible legacy to leave my children. They need me as a father. So I have been fighting the urge for many years. However, I feel I have no hope and things are not improving, but rather getting worse. I am not sleeping hardly at all, and my mental anguish and anxiety are terrible. Years of sleeping just 3 hours a night, and the complete loss of well-being, and the torture ENS brought to my life have become unbearable.

One thing that makes it tough is there is no escape. Since it is breathing related, it is constant. The lack of nerve signals being sent to the brain makes it torture. That is the hardest part to explain. I was so sleep-deprived, and sleep is such a motivator, I would do anything for it. My friends and family cannot comprehend my suffering, and cannot understand why I cannot transcend my problem. I would like nothing more than to successfully cope. I have two beautiful children that need a healthy father. I want to feel better so I can be there for them. Other than the physical symptoms, I suffer from a complete loss of well-being. I have severe depression and anxiety. I always excelled in school and work and, overall, things came pretty easy for me. I was so very capable. Now everything is so hard. Little tasks are hard. I spend my days trying to not lose it mentally. When I discuss my problems with my friends and family, it is very hard on them. They cannot help the situation so they do not know how to react. I try my best not to burden anyone anymore. As a result, it is a very lonely condition. Only my fellow ENS sufferers, who I met online, can comprehend what I go through. I confide in them. This is not my suicide note.  Although I am suicidal. Every day, I feel the urge. I force myself to make it one more day. I have been saying that to myself for years. I have never imagined such pain could have been brought to my life to ruin it.

Sick Care

•March 9, 2013 • 4 Comments

Five years, four months and two weeks ago, an ENT, whom I had gone to see for tinnitus, cut a large amount of bone out of my nose and face for no medical reason. This unnecessary surgery left me maimed, in pain, unable to breathe, and infected with acinetobacter, a deadly antibiotic-resistant infection. The surgeon, who examined my nasal cavity three times over the next six weeks, never cultured the infection or offered help. In screaming agony, I went to another ENT who prescribed Augmentin without culturing the infection. My mucous membranes had been ripped out in an obsolete surgery called a Caldwell-Luc. The infection lay over raw and bloody body tissues and exposed cut-open bones.

The new ENT, Dr. F., then wrote a letter to my GP describing my infection as “a small amount of purulent discharge,” and devoted the remainder of the letter to rationalizing the senseless butchery. My GP of five years sat with the letter in her lap, a look of disbelief on her face, and suggested I try another ENT. I stuck with Dr. F. It would have taken months to see another ENT. As it was, I couldn’t even see Dr. F. for five more weeks.

Before those five weeks had passed, the infection claimed my body. My lungs, throat, nasal cavity and sinuses filled with blood and pus. I could barely speak or breathe. I lay still in my bed for days, afraid to jar so much as a hair for fear I would slip away. Finally, I crawled to my phone and called my GP at home on a weekend. She called a prescription for 10 days of Augmentin into my pharmacy. This was five days before my next scheduled appointment with Dr. F.

When I saw Dr.F., he suctioned pus out of my nose for ten minutes. “Look at all this,” he marveled to his resident. A circus clown would have known, at this point, that the infection was antibiotic-resistant. Dr. F. ordered me to finish the Augmentin and then return in six days for a sinus culture. A wrong antibiotic will beat down an antibiotic-resistant infection. Unfortunately, a wrong antibiotic is worse than no antibiotic at all because the infection that remains will then mutate and become more antibiotic-resistant. He wanted to beat back the infection before he cultured it because of course he should have cultured it five weeks earlier. Instead, he had strengthened the infection in the course of attempting to minimize my condition and cover up a colleague’s malpractice.

The Augmentin didn’t do the job that Dr. F. had hoped it would. Six days later, I tested positive for acinetobacter. The infection was eventually cleared.

For the next five years, I struggled with antibiotic-resistant eye infections, tooth roots and a recurrent “sinus” infection on the right side of my face. The right side of my face has progressively collapsed. For three years, I have suspected that the “sinus” infection is an infection of the bone or osteomyelitis. I have been unable to get this infection diagnosed because Dr. F. has sabotaged my care, calling around to my caregivers and making sure I get no help. I must never get a diagnosis until I am so old and decrepit and so much time has passed that Dr. F. can claim there is no relationship between his malpractice and my osteomyelitis.

Allow me to describe an example of the kind of “care” I am receiving for this recurrent infection. The pain began again last August. I saw Dr. D., an ENT. Dr. D. ordered a two-week course of intranasal Bactrim, with 2 refills. I used all three, refilling the prescription each time the infection returned. Then I returned to see Dr. D. in January. I took my laptop computer and my 2-year-old bone scan which, unfortunately, was done at the end of a long course of antibiotic treatment, rendering the scan almost useless. Even so, the scan was not entirely normal. Dr. D. guffawed at my scan and said he didn’t know how to read it. I told him—as I had before—that I really believed the infection was in the bone. He dismissed that, saying that if I had a bone infection, I would be really sick—systemically sick. I told him that, in fact, I was really sick and had been for months. He ignored that and said he was prescribing another antibiotic. I had now had the infection for five months. He was able to see the infection with an endoscope. I said, “Aren’t you going to culture it?”

“Pshawww,” he said. “If I culture it, you’ll just get a bill for a lab test. Let’s do the antibiotic and then I’ll culture it next time.” That’s right. Let’s kill the infection and then culture it. Where have I heard this logic before? And its variation: Let’s kill the infection and then do a bone scan. In fact, I had been hoping for a new bone scan. After a powerful round of antibiotics, I would not be able to get a clear bone scan for another six months. So Dr. D. wrote a prescription for a two-week course of Clindamycin. I became horribly sick from the antibiotic—raging, diarrhea, pain and nausea. I didn’t return to see him because I was out of town visiting a friend.

I returned to his office five weeks later, still sick. “Oh my God,” he said. “You should have stopped taking it.” (I admit that I should have.) “We have to test you right away for C. Diff. I knew what he was talking about. Clostridium Difficile. A serious intestinal infection one gets from taking too much antibiotic. I had already researched it and I was pretty sure I had it. I had to ask him to culture the “sinus” infection which I believed would test negative after that antibiotic assault. In fact, he saw no infection. “Well, it must have killed something,” he chuckled. “It took out your GI tract.”

I got the C. Diff test done at an Urgent Care.  Two days later, Dr. D.’s office called early in the morning. M. was telling me that Dr. D. wanted to start me on Bactrim. I believed she had received a positive result on the C. Diff. test. “The infection is Clindamycin-resistant,” she said.

Bactrim is not a drug for C. Diff. “Oh, you’re not talking about the C. Diff,” I stammered. “You mean…?”

The “sinus” culture had tested positive. I asked her what the “sinus” infection was. Meanwhile, I was spinning with the knowledge that I probably also had C. Diff, which would certainly be made worse by Bactrim. “I don’t know,” she said.

“You don’t know? What does the lab report say?”

“I don’t interpret lab reports,” she said.

I lost my temper and yelled that I never should have been put on Clindamycin which had made me very sick, and here it turned out that the “sinus” infection was Clindamycin-resistant. “The infection should have been cultured before putting me on an antibiotic,” I fumed.

When I got off the phone, I called the Urgent Care. The C. Diff test was positive. M. called me back and said I could pick up the lab report at their office which is a 45-minute drive. On my way there, she called again to tell me my C. Diff test was positive. “Dr. D. wants to put you on Flagyl,” she said. “No thanks,” I responded.

The lab report was enlightening. The infection is a rare form of staphylococcus. I’ll bet that is the most antibiotic-resistant staph on the planet. Bone infections are usually staph. I also have a diphtheria-like infection. A good life-threatening case of C. Diff was just what the doctor ordered.

Scrubbed Out

•January 3, 2013 • Leave a Comment

In his book, Scrubbed Out: Reviving the Doctor’s Role in Patient Care, Dr. Salah D. Salman says, “The United States needs a universal health care system, which is already available in less affluent industrialized countries. I believe that health care is a human right, and it has been neglected in this country.”[i]

“Dr. Salman studied and trained at the American University of Beirut and at the Johns Hopkins Medical Institutions. He spent his professional life in academic medicine. He is a former Professor & Chairman of the Department of Otolaryngology at his Alma Mater. In 2009 and after 23 years, he retired from being a Surgeon and Director of the Sinus Center at the Massachusetts Eye & Ear Infirmary, and a lecturer at Harvard Medical School in Boston, Massachusetts.”[ii]

Dr. Salman points out that “needed reform is slow to come to the U.S. health and insurance industries.”[iii] He recounts that U.S. Presidents have attempted health care reform, starting with President Truman who tried and failed to pass a compulsory universal health insurance law in 1945. “President Nixon in 1974, President Carter in 1979, and President Clinton in 1995 each put forth proposals to broaden health insurance coverage and make it universal.”[iv]  Each of their proposed plans also failed due to the opposition of businesses.

“Congress has acted courageously on more than one occasion in the past for the interests of the public—why not now?”[v] Saldan asks.  He points out that President Johnson succeeded in introducing Medicare and Medicaid in 1965.

Salman contends that “market forces have been allowed to play important and decisive roles in health care, with catastrophic results. Medical leaders have supported and even adopted business principles that were not designed for the practice of medicine or the management of suffering.”[vi] He adds that “Leaders in the medical field have learned from administrators and others that the appearance of propriety is more important than propriety itself. The concept of right or wrong seems to no longer exist—almost any behavior to increase income and cut down expenses has become justifiable.”[vii]

Saldan discusses the financial interests that contaminate the practice of medicine, in every area, including medical schools that divert funds away from the training of doctors, health insurance companies, medical device corporations, pharmaceutical companies, hospital administrators, doctors who perform unnecessary surgeries and order unnecessary tests, and medical organizations such as the AMA that serve to protect the financial interests rather than perform their stated roles. For example, “as another example of business priorities, the AAO-HNS’s president and chair of the board of governors launched a campaign called ‘2001: A Sinus-free Odyssey’ as part of Sinus Awareness Month in March 2001. The aim of the campaign was mainly profit. Letters to academy members asked them to inform the thirty-seven million sinus sufferers in the U.S. that medical and surgical relief was available for chronic sinusitis, thereby indirectly promoting a wave of unnecessary and costly surgeries.”[viii]

Saldan says, “The sad story of chronic sinusitis and functional endoscopic sinus surgery is worth describing in some detail. When fully told, it illustrates many of the problems that have plagued health care and that this book discusses. As an ENT surgeon, I have witnessed its unhindered growth and development for years; a new theory about the cause of sinusitis and a new surgical technique to cure it were widely adopted fast, without convincing proofs of their value. Evidence against them was suppressed when it surfaced. The medical and hospital leaderships failed to intervene when they should have to monitor quality of care and to control cost. The see-no-evil attitude of medical doctors helped the wide spread of a questionable theory and a questionable surgical technique.”[ix]

“FES quickly acquired enormous—and in retrospect, suspect—popularity in the U.S. Shortly after its introduction, the reported incidence of sinusitis increased rapidly and for no apparent reason. For example, from 1986 to 1988, the federal government reported fifty million workdays lost to sinusitis. Between 1989 and 1992, the numbers increased to seventy-three million. I suspect that the numbers would not have increased so dramatically had FES not been introduced, aggressively marketed, and popularized. Indeed, because FES was lucrative, its indications were stretched to a suspect extent.”[x]

“Hospitals encourage abuses because of the business unnecessary surgeries bring. Direct advertising and reporting in the lay media have helped increase FES’s popularity. Critical voices are suppressed or ignored. Conflicts of interest have become commonplace. As a result, we now face an epidemic of unnecessary and incomplete sinus surgeries, which have resulted in deaths and serious complications, and which have significantly contributed to the escalating cost of health care.”[xi]

Dr. Saldan wrote critical papers that were constantly turned down by medical journals. He concluded that “The medical and business beneficiaries of this ‘miraculous’ surgery are too mighty to fight; they have a whole arsenal of political, legal, and monetary weapons with which to resist control and regulation. A system that does not provide a forum for critics to be heard or their opinions acted upon is not a good system to protect patients and control cost; it is a system crying out for reform.”[xii]

Where should reform begin? Saldan believes that “we need to replace the current medical leaders with new, committed, capable, and powerful leaders who can make a difference. We also need a new entity to oversee reform, with authority over the current health care players: a powerful, apolitical, independent organization that can make and implement the needed hard decisions, which none of the present players have done or can do. Whether appointed or elected, these new leaders must be aware of and accountable for their responsibilities toward the medical industry and the public—responsibilities that transcend bookkeeping, balancing budgets, and protecting the interests of doctors, medical schools, and hospitals. Instead, these new, top leaders should be willing and able to make unpopular decisions that serve the interests of the patients and the public in general, and should be able to fight the commercialization of medicine and the prioritization of corporations’ interests over patients and public health.”[xiii]

“To reform the medical leadership, this book advocates a solution first proposed in 2004 by authors Barlett and Steele: an independent government organization that is largely immune to politics should be created, called the U.S. Council on Health Care (USCHC).81 Such an organization would essentially be analogous to the Federal Reserve System, and would shape health care policies much as the Federal Reserve oversees the nation’s money and banking policies.”[xiv]

Saldan says, “The solutions the book proposes are not easy to design and apply, but they are necessary and unavoidable. And they’re far more realistic than waiting for the impossible to happen: for the insurance and pharmaceutical companies to become philanthropic; for the legislators to become insensitive to their generous corporate contributors; for the administrators to alter their priorities; and for the lawyers to become saints. We do not have to wait for the impossible; we need to take action now, before the system collapses and the health care reform signed into law in 2010 fails to achieve all its intended long-term purposes.”[xv]

[i] Salah D. Salman M.D. (2011-09-06). Scrubbed Out: Reviving the Doctor’s Role in Patient Care (Kindle Locations 2536-2537). AuthorHouse. Kindle Edition.

[ii] Ibid.

[iii] Ibid.

[iv] Ibid.

[v] Ibid.

[vi] Ibid.

[vii] Ibid.

[viii] Ibid.

[ix] Ibid.

[x] Ibid.

[xi] Ibid.

[xii] Ibid.

[xiii] Ibid.

[xiv] Ibid.