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是不是真的有「空鼻症」( 六 )


更多的细节在他的其他的遗书里面显现出来了。有一个是接近30页的手迹，Brett指示Sean和其他三个朋友去读，是他之前存留于娜塔莉那里的。
这个手迹里面有着舞台剧的指示和其他的细节的指示，甚至包括谁来念哪一部分和甚至有该停顿多久来等待特定的笑话。是有长喘气的和杂乱无章的——数次生气的抱怨（“我已经被空鼻症和一个穿着白色长夹克的生意人杀了无数次”）和一些对其他人开的黑暗笑话（“我感受到我被扔在海上时Hasselhoff最终把我拉了起来拯救了我，他只是将一些阳光拍在我身上然后开着他的小水上摩托车走了”）。Brett对描述有着一套，但是这在情感上的折磨着Sean和在舞台上读着这些话的，以及舞台前的每一个人。
“The idea of selfishly trying to end my suffering seems less and less selfish the worse things get,” Brett wrote. “I beg for your blessing in letting me go… I’m worn out, worn down and nothing feels right anymore. Our bodies are simply not equipped to deal with what I have been dealing with for so long, and I’m really sorry but I gotta get the fuck outta here, you guys.”】
“结束自己痛苦的念头（即自杀，译者注）曾让我觉得自己很自私，但随着情况越来越糟糕，这样的想法越来越淡了。” 我已筋疲力竭，逐渐垮掉，所有的一切都不再美好。人类（原文为我们，译者注）的身体实在无法应对我一直以来承受的痛苦。我很抱歉，但我不得不离开这里了。永别了，大家。
是不是真的有「空鼻症」
Courtesy Helling Family
The poster from Helling Yeah!, a benefit that Brett\u0026#39;s friends threw to remember him. 这个海报是来自“Helling Yeah!”，一个Brett的朋友们用来纪念他的募捐活动。
The memorial was so packed that Sean and others had to keep moving tables out of the way to make space for the crowd. He was thankful for the task. It gave him something to do other than sit and stare at that deer head and wonder whether his friend could have been saved.
纪念仪式是如此得繁忙，以至于Sean和其他人不得不一直把桌子移走，把空间腾出来给人群空间。他非常感激自己有这个任务。这给他一些事情去忙，而不是坐在那里注视着鹿头，思考着他的朋友是否可以被拯救。
Brett may get one of his dying wishes in 2016. Though ENS is still little-known to the general public, more ENT doctors are recognizing it and wrestling with it. In August, one of Nayak’s patients, Peter Esquinasi, wrote a letter to the American Rhinologic Society, relaying his ENS experiences and demanding a response. “Just because many people survive these types of surgeries does not mean it is the best thing for them,” he wrote. “Yours is an organization which sadly must answer this question: Do ENTs do extra surgeries for extra money? Or are they grossly misinformed? Either one is bad, but you must look in the mirror and choose one.”
Brett可能在2016年完成了一个他的死前的愿望。尽管空鼻症仍然没有被大众所熟知，（但是）更多的耳鼻喉医生开始承认和研究它。在八月份，一个Nayak医生的病人，Peter Esquinasi，写了一篇新给美国鼻科研会（ARS），转述了他的空鼻症的经历，希望得到一个回复。“不是很多人从这几种手术中幸存不代表这个是对他们最好的，”他写道。“不幸的是，即使你们是同一个一个组织，你们也必须回答这个问题：耳鼻喉医生们有没有做额外的手术去赚更多的钱？或者他们故意引导着？每一个选项都是不好的，但是你们不得不照着镜子去从中选一个。”
The ARS executive committee responded in a letter. “We want you to know that the American Rhinologic Society is pursuing an ongoing educational effort relating to ENS,” it stated. “Your letter is of particular importance to us in the context of our educational mission.”
美国鼻科科研会行政部门委员会在信中这么回复着。“我们想让你知道美国鼻科科研会正在继续着一项跟空鼻症的教育相关的努力，”回信这么陈述道。“你的信件对整体的教育任务是非常重要的。”
Dr. David Poetker, who’s on the ARS board of directors, said in an email that the ARS has no particular stance on ENS. “It is a complex issue that is not very well understood,” Poetker says. “Unfortunately, there is not a lot of money for research for nasal issues in general. We continue to do the best research we can with the limited resources available.”
David Poetker医师 是一个美国鼻科科研会的一个董事，在一封邮件中说道 美国鼻科科研会对空鼻症没有特别的态度。“这是一个非常复杂的问题，并不是很好理解，”Poetker说道。“不幸的是，从整体上说我们并没有很多的钱去研究鼻腔的问题。我们会继续用有限的资源去做最好的调查。”
In January, Dr. Das in Columbus noted a sea change in an open letter to ENS patients he posted on the emptynosesyndrome.org forum. ENS, he said, is the thing keeping some of his colleagues up at night. “There continues to be greater recognition that ENS is a problem,” Das writes. “Many panels within the American Rhinologic Society are discussing ENS as a real problem and leading discussions on the best way to solve this problem.” Das’s letter also expresses hope about the injection therapies he’s tried on 180 patients from 25 countries; 82% of them reported an improvement in their symptoms.
一月份的时候，在 emptynosesyndrome.org的论坛上，哥伦布的Das医师在一封对空鼻症患者的公开信中，指出了一个巨大的变化。他说空鼻症开始让他的一些同行通宵研究。“那里有持续着更多的认知，（去认识到）空鼻症是一个问题，”Das 写道。“很多美国鼻科科研会的事务委员把空鼻症当做一个真实的问题并且带领着讨论，用什么方式才能更好得解决这个问题。” Das的信中也展示了关于注射疗法的希望，他在25个国家中的180个病人中进行的注射疗法中，82%的人报告说他们的症状有改善。
And it’s no small thing that a press release for Ohio State’s nasal surgery study mentions empty nose syndrome by name, even though Carol Helling says Ohio State doctors told Brett he didn’t have it.
俄亥俄州立大学的鼻腔手术研究中提及了空鼻症的名字，（Das的公开信）这对他们来说减轻了很多的压力，即使Carol Helling（Brett的母亲）说俄亥俄州的医生们告诉Brett他并没有空鼻症。
In some ways, Brett’s case was typical. His symptoms overlapped with many others who say they have ENS. The problem is, there’s still no firm definition of empty nose syndrome, which means there’s also no firm way of diagnosing it. And misdiagnosis is an issue. Houser and Nayak say they’ve seen patients who were convinced they had ENS but had a different nasal problem entirely.
在某些程度来说，Brett的案例是具有代表性的。他的病情综合了很多其他自认为自己是空鼻症的人的症状。（但）问题是，关于空鼻症没有严格的定义，这也就意味着没有确切的方法去诊断它。与此同时，误诊也是一个问题，Houser 和Nayak医生说他们见过很多认为自己是空鼻症的病人，但是他们在整体上(却是)其他的鼻腔问题。
是不是真的有「空鼻症」
（在某些程度来说，Brett的案例是具有代表性的。他的病情综合了很多其他自认为自己是空鼻症的人的症状。）
“My research group is trying to lay the groundwork for better defining ENS, and pulling it out of the ‘mysterious, not sure it exists’ bucket, into the ‘definite diagnosis with defined parameters’ category,” Nayak says. Recently, Nayak and his Stanford researchers analyzed CT scans of patients diagnosed with ENS and compared them to patients who underwent turbinate reduction surgery but had no ENS symptoms — a comparison that had never been done before. “We detected a statistically significant central location in the nasal airway that swells in the CT scans of ENS patients, but not in any control patients,” Nayak says of the soon-to-be-published study. Nayak’s group also came up with six questions he says will more accurately diagnose ENS. He and his team will present their findings at a national meeting of otolaryngologists in Chicago in May.
“我的研究团队一直为尝试着，为更好得定义空鼻症而打基础，（将）它从‘神秘，不确定存在’的盒子中拉出来，放到‘可以用确切得参量确切得诊断’范畴内，”Nayak说道。最近，Nayak和他的斯坦福的研究者们 把那些诊断为空鼻症的病人和那些做了鼻甲消融手术，却没有空鼻症症状的病人的CT扫描做了对比——他们以前从没有做过这样子的对比过。“从数据上非常明确得显示，空鼻症患者在鼻腔的中心位置有着非常明显的肿胀，但是术后没得空鼻症的人却没有，”Nayak在他的即将发布的研究中说道。Nayak的团队也得出了可以帮助更加准确得诊断空鼻症的六个问题。在五月份，他和他的团队们将会把他们的研究发表于，位于芝加哥的耳鼻喉科医师的国际会议上。
Doctors’ responses to the presentations could determine how ENT doctors approach ENS moving forward. Will Nayak’s research — along with the work from Ohio State, Das, Houser, and others — finally put the skepticism to rest, or will doubt persist? If the data resonate, will doctors alter their surgical methods? And will those changes spill over to the cosmetic surgery community, where doctors performing nose jobs are probably even less familiar with ENS?
医生们在报告中的回馈可能会决定耳鼻喉医生们在接触空鼻症的时候该如何展开工作。Nayak的研究将会和俄亥俄州立大学，Das, Houser, 和其他的人的研究一起——最终将会使怀疑论止歇，（Nayak的研究）又或将会质疑坚持论呢？ 如果数据和之前的研究产生共鸣，会不会给医生们的手术方式敲响警钟？又或是这些改变会从整形手术社区中流出，使得那些从事鼻子工作的大夫对空鼻症更加不理解？
Turbinate reductions aren’t likely to go away, despite outcries of malpractice from ENS patients. Every otolaryngologist I spoke to, including those who acknowledge the dangers of ENS, continues to perform surgeries on turbinates. A friend of Brett’s recently wrote to his congressman to propose a bill that would require doctors to warn patients about the risks of ENS before turbinate surgeries, but even Houser says that goes too far. “The rate of ENS development is so small, and if turbinates are treated properly, ENS should essentially never occur,” Houser says. “The focus should be on educating doctors of proper techniques.”
鼻甲消减手术不太可能会消失，除了被医疗不当的空鼻症患者们的高声呐喊外。每一个与我谈论过的耳鼻喉医生，包括那些认同空鼻症的危害的，也在继续着在鼻甲上面进行手术。一个Brett的朋友最近给他的国会议员的信中写道，他建议提出一个法案去要求医生们在进行鼻甲消减手术之前要向患者们警示手术有空鼻症的风险。但是即使是Houser医生也说这点走得太远了。“发展成为空鼻症的概率很小，假如我们对待鼻甲的处理正确，空鼻症应该永远不会发生，”Houser 说。“我们应该把精力放在对教育医生们进行合理的手术上面。”
Houser also often requires patients to undergo mental health assessments before he considers surgery, and Payne says he’s similarly vigilant. “There are some people I’ve refused to do surgery because they were people who I felt were setups for an empty nose scenario,” Payne says.


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