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是不是真的有「空鼻症」( 三 )


在克利夫兰的耳鼻喉诊所，Steven Houser博士遮盖了他之前的主治医师鼻腔手术的记录，有时候会处理一些当初来他之前的诊所咨询的访客。在九十年代晚期，Houser（豪斯医生）实习期就要结束的一天，他检查了一个中年妇女的病历记录，这个妇女向抱怨她的鼻子堵塞、充血并且呼吸困难。主治医生在几年前已经给她的鼻甲进行了手术。由于手术时间已经很久，有足够的时间恢复，所以Houser认为这个女患者可能鼻子受过伤或者形成了鼻息肉导致堵塞。但是当Houser检查患者时候，他吃惊的发现女患者的鼻子根本没有堵塞物，（“你能开着卡车从那里通过” Houser说到），而且女患者鼻中隔非常直。没有破洞或者其他异物，但是，她的鼻甲-这些鼻子内部的管状骨结构-在手术后明显的减少。这个妇女告诉Houser医生，当她感冒的时候反而感到呼吸顺畅。
是不是真的有「空鼻症」
Dr. Steven Houser 史蒂夫豪斯大夫
Houser was baffled. How could this woman have trouble breathing when her nose was wide open? And why would a cold make her feel less blocked? He described the situation to his attending physician, who then went into the room without Houser. After the appointment, the attending physician hemmed and hawed and never provided a good explanation. He told Houser not to worry about it.
【是不是真的有「空鼻症」】 Houser很是困惑。为什么这个女人的鼻腔如此宽敞却有着呼吸困难的问题呢？为什么感冒会却让她感觉不堵塞呢？他吧这个情况反馈给了他的主治医师，他（主治）接下来在没有Houser的陪同下进行了就诊。在会诊结束后，主治医师支支吾吾得而且并没有提出一个合理的解释。但是他告诉Houser不要担心这个事情。
But Houser did worry. What could explain such a bizarre condition? He did some research, and after talking to Dr. Murray Grossan, an ENT doctor in Los Angeles, he learned about empty nose syndrome, a controversial condition coined by the Mayo Clinic’s Dr. Eugene Kern in 1994. Kern described “nasal cripples” who, after turbinate surgery, suffered from symptoms like nasal dryness, crusting, and a sense of obstruction despite a wide-open nasal airway. With the help of colleagues, Kern conducted a study of 242 patients who’d been diagnosed with a rare type of nasal infection and theorized that many of these patients actually suffered from empty nose syndrome.
但是Houser确实担心了。到底什么可以解释这种离奇的状态呢？他做了一些调查，当他在和一个在洛杉矶的耳鼻喉科医，Murray GRossan（默里葛罗桑）教授谈话后之后，他学到了空鼻症这个有争议的疾病，在1994由 梅奥诊所的 Eugene Kern（尤金科恩）医生创造并且提出的。Kern 描述为在鼻甲手术之后的“鼻损伤”，有着鼻腔干燥，结痂，和一种感官上的无阻碍的过度宽敞的鼻腔通道。在同行们的帮助下，Kern 调查了242 位受到一种罕见的鼻腔感染的病人后，推理出这些病人确实承受着空鼻症的折磨。
Not everyone in the ENT community was convinced by Kern. In a 2001 Los Angeles Times article, one physician referred to the supposed illness as “empty head syndrome.” But Houser took to the internet and began talking with people about their ENS symptoms. In one forum, he started a “Questions for Dr. Houser” thread. Some in the forum sound merely curious (“Is it good for us to swim?”). Some wonder about stem cell treatment to replace missing tissue (“Your first goal, if you want stem cells or another treatment,” Houser responds, “should be to get ENS recognized as a problem.”). Others can’t sleep and are getting desperate (“I am devastated. ... I can find things to do to make it through the day; can you help me make it through the night?”). Eventually there were so many questions — nearly 30 pages of threads — that Houser’s wife was getting mad at him for spending all night on the internet. He had to stop answering questions online, but he didn’t stop his investigation.
并不是所有的耳鼻喉团体都认同Kern. 在2001 年洛杉矶时间的文章中，一个内科医生认为这种疾病应该被叫做“空头症”。（但是）Houser开始在互联网上与人们讨论关于他们空鼻症的症状。在一个论坛上，他创建了一个“向Houser医生提问”主题。有的人在帖子中的话听起来很奇怪（“游泳会不会使我们好一点？”）。有些人惊讶于阴茎细胞治疗可以替代失去的组织{“如果你你的首要目标是想阴茎细胞或者其他的方式进行治疗，”Houser回复，“得到空鼻症患者的认可是一个问题。”} 有的人由于不能睡觉而变得绝望，（“我极度渴望（睡眠，译者注）。 。。。 我可以找到一些事情去做来度过白天；你可以帮助我使我熬过晚上吗？”）最终这些众多的问题——将近30页的帖子——使得Houser医生的妻子开始对他把整晚的时间花在电脑上面感到生气。他不得不对停止了在网络上的问答，但是他并没有停止他的调查。
是不是真的有「空鼻症」
（我已经有12个病人告诉我，我不仅仅拯救了他们的性命，而且让他们停止了自杀的尝试）
Once patients realized an ENT doc was not only interested in their condition but also wanted to help, they began traveling from Australia, Europe, China, and the Middle East to Houser’s clinic in Cleveland. For patients Houser diagnosed with ENS, he developed an AlloDerm implant to mimic the lost turbinate tissue. Insurance didn’t cover the $9,000 to $14,000 procedure, but it seemed to be working. One of Houser’s patients self-published a book about his ENS experience: Having Nasal Surgery? Don’t You Become an Empty Nose Victim! Houser wrote the foreword.
一旦病人们意识到一个耳鼻喉医生不是仅仅对他们的状况感兴趣，并且想要帮助他们（时，译者注），他们就开始从澳大利亚，欧洲，中国和中东来到Houser大夫位于克利夫兰的诊所。对被他诊断为空鼻症的病人，Houser研发出了一个内胚层去植入鼻甲组织来模拟失去的组织。花费9000-14000美元的手术并不被保险覆盖，但是它似乎起作用了。Houser的一个病人自己出版了一本关于他的空鼻症的经历：做了鼻腔手术吗？不要成为一个空鼻症的受害者！ Houser为这本书写了前言。
“I’ve had about a dozen patients tell me that I’ve saved their lives and kept them from committing suicide,” says Houser, who has operated on about 70 people. “That’s why I continue to do this, because, to be honest, these patients are very difficult.”
“我已经有12个病人告诉我，我不仅仅拯救了他们的性命，而且让他们停止了自杀的尝试，”Houser这么说道，他给70个人做了手术。“这就是为什么我继续这样做，因为，说实话，这些人处境非常艰难。”
Since Kern’s report in 2001, very little had been written about empty nose until Houser published the findings of his experimental implants in 2007, and then another article — “The Diagnosis and Management of Empty Nose Syndrome” — in The Otolaryngologic Clinics of North America in 2009. In the same journal issue, Dr. Spencer Payne at the University of Virginia published a response paper titled 【“Empty Nose Syndrome: What Are We Really Talking About?”】
从2001年Kern的报告出来的时候开始，关于空鼻症的文章非常少， 直到在2007，Houser在他的位于北美的耳鼻喉诊所发布了他在的植入手术上面的发现，2009年发布了另一篇文章——“诊断和管理空鼻综合症”。 在同一期杂志上，弗吉尼亚大学的Spencer Payne（斯宾塞佩恩）医生发布了一个回复性论文标题为【“空鼻症：我们到底在说什么？”】
“The problem with empty nose syndrome is probably not that it does not exist,” Payne writes, “it is that we cannot adequately explain its existence by what we currently understand about the nose. Many otolaryngologists are unwilling to make a ‘leap of faith’ and, instead of acknowledging the existence of something they do not understand, are left skeptical of it in its entirety.”
“空鼻症的问题可能并不是不存在的，”Payne（佩恩）写道，“只是我们无法通过我们现有的关于鼻子的理解合理得解释他的存在（罢了）。很多耳鼻喉医生并不愿意去做一个‘信仰之跃’, 取代承认他们并不了解的存在的东西，他们不愿意去怀疑原有的认知。”
While the symptoms ENS patients complain of are unique, their plight is familiar. For years, people suffering from chronic fatigue syndrome were treated with skepticism from the medical community and often told their debilitating condition was psychogenic. “Maybe these people are just lazy” was the unspoken (or sometimes spoken) refrain. BuzzFeed previously reported on a 2010 CDC study that concluded chronic fatigue patients suffered disproportionately from “maladaptive personality features” like neuroticism, paranoia, and OCD. It wasn’t until 2015 that the National Academy of Sciences pronounced chronic fatigue syndrome to be a debilitating condition with concrete physical symptoms and not a psychological illness. In the same NAS study, most patients reported it taking more than a year to get a diagnosis; a third reported it took more than five years.
这些空鼻症患者们的抱怨并不是独有的，（还有人，译者注）和他们的困境是相似的。人们承受着持续很多年的慢性疲劳综合症，被医疗团队以怀疑的态度对待着。“也许这些人就是懒”，出于一种无言 {或者有时候口头上} 的避免，医生们告知他们的衰弱的情况是心理因素。BuzzFeed之前报道的一个在2010 CDC的研究，总结道慢性疲劳的病人不同程度得承受着“不适应的个人不良体征”像神经过敏症，妄想症，和强迫性官能症。直到在2015（美国）国家科学院声明慢性疲劳综合症是一种日渐衰退的状态并且不是心理疾病。在相同的美国国家科学院的研究中，大部分的病人得到一个诊断的时间大于一年；三分之一（的人）大于五年。
是不是真的有「空鼻症」
（“空鼻症的问题恐怕不是在它不存在，而是通过我们现在对鼻子的理解，我们无法科学的解释其存在。”）
Fibromyalgia patients face similar skepticism. Physicians also once believed irritable bowel syndrome was a psychological condition. Leaky gut syndrome is accepted within some corners of alternative medicine, but many doctors are skeptical of its existence. Morgellons — a more recent controversial condition involving painful, itchy lesions with mysterious “fibers” — is often regarded as a delusion, a form of psychosis.
纤维肌痛的病人面临着相似的怀疑。医生们也曾经一度认为大腸激躁症是一种心理疾病。肠漏综合症在因为（不同于现代西方医学的）另类医疗在某些方面被接受，但是很多医生怀疑其存在性。莫吉隆斯症—— 最近的一种更加有争议的疾病，（患者）的身体有着着疼痛，病态的痒，并带着神秘的“纤维物质”——经常被认为是错觉，一种精神疾病。
Regardless of the validity of these contentious conditions, the experience for people who believe they have them is similar. They go from doctor to doctor, craving a diagnosis, or at least a physician who will take their complaints seriously. In one study, chronic fatigue syndrome patients said that “lack of acknowledgment could be even worse than the symptoms.” 【Meanwhile, the actual symptoms — which are experientially real, even if the source is debated or unknown — persist. 】The longer the symptoms persist, the more likely they are to either exacerbate underlying psychological conditions (anxiety, depression, OCD) or create them.


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