Hi Redditors, I am a person that had surgery May 26th 2016 that resulted in me contracting Empty Nose Syndrome, the disease Micheal Jackson had, this is close to two years I've lived with it. AMA.
Apr 8th 2018 by ENS_Patient • 5 Questions • 9373 Points
It is as bad as they say. It is he'll on earth. Imagine every breath causes you pain, and the more you breath the more pain you feel, and the more suffocation you feel because you aren't getting enough "processable" air. The air optimization function in the sinuses has been damaged, imagine it as a small and extremely sensitive ecosystem and once it is mutilated past a specific threshold it no longer functions to optimize the air before it gets to the lungs.
This means that the amount of air the alveolar-exchange process in the lungs actually processes is less than optimal maybe 50%, and the harder you breathe the less efficient it gets because the air optimization process in the sinuses has been compromised. And you start to literally suffocate, and the insidious sensation of that process is horror.
The sinus disease empty nose syndrome is a disease of pure horror, and many ENS patients kill themselves. According to Eugene Kern who diagnosed the disease, although it was known of as early as 1915 according to records, Eugene Kern identified it and coined it's now medical term "Empty Nose Syndrome". His presentation on the subject.
Ask me about the disease, how I got it, and anything else.
Edit: I peaked at 9 points and now I'm getting down-voted. The people that did this to me are a large medical organization that gave me this disease doing unscientifically proven surgeries on me against my will and with no informed consent. I wish I could tell more people, but this surgical procedure is very profitable for hospitals and medical industries, they sign want to stop doing it. I appreciate people's interest so far, but this will probably get buried again.
Edit well my post was removed because I didn't provide evidence, even though no one had yet asked. It's been good talking to you fellow redditors. You can sometimes be cathartic. I'm doing my best and I hope the best for all of you as well. Cheers.
Edit I went to bed last night and woke up with a lot more questions. I also woke up feeling pretty intense suffocation I think because I was trying to do yoga the last two days to try and heal my sinuses. This feeling of suffocation is pretty horrible. Before I answer some of these questions I want to make it clear some of my assertions are from my own subjective experience, others from research done trying to fix what happened to me. Whatever the medical industry "professionals" on here and legal experts tell you, you still have the right to make your own conclusions, as well as ask me for clarification on any ambiguities. I'll try to answer some more questions now. Also, This is the original condition I was referred for and the only condition I agreed to treatment for; nasal valve collapse, I requested a procedure to fix this and the surgeon agreed, and then did different surgeries inside my sinuses.
Edit: I'm now done answering quesrions. Thanks for the questions everyone, I've spent a lot of time and energy trying to explain aspects of this disease and I appreciate the dialogue, but I'm pretty tired now. Thanks again for everything fellow redditors.
Final Edit: this was really difficult thank you for your support.
Hi everyone, please click here to support my GoFundMe campaign; Legal Fund(Empty Nose Syndrome): https://www.gofundme.com/5dmqq5s?pc=sms_sf_co2876_v1&rcid=0e9bcdeb0cd946d3934252460be81aa2
Health Fund(Empty Nose Syndrome): https://www.gofundme.com/5dmsuug?pc=sms_sf_co2876_v1&rcid=8cbdfe5e34ca49b3861d9bf3e60a42d1
Were there any repercussions for the surgeon who caused this?
You mention many people with the condition kill themselves: is this something you have or would consider?
How old are you?
He's being investigated by the state medical board, and I am also going to sue him for medical malpractice, that process is ongoing, and I also want the police to investigate and put him in jail because he did all these surgeries on my sinuses against my will, intentionally against my will.
I was down on my luck at the time and he had the impression that I was a poor uneducated person who he could do whatever he wanted too and so he bypassed the informed consent process and did a bunch of surgeries against my will. [Edit: this is theoretical empathization of a person's motives, a person who intetionally does unnecessary surgery on people against their will, also I had insurance and did lots of research on in-network doctors].
He is a predator who is also a child-surgeon. What he did to me is the crime of "surgical battery" and it's a felony and he should serve jail time and lose his license. I am working with what limited energy I have so make sure 1) I get justice, 2) he takes responsibility for his actions, and 3) the public is safe.
I have considered killing myself, I think everyone has, how seriously people consider it is different for every person every time they do. I think about death a lot because this disease will probably kill me, if I can't cure it.
I am making peace with it and communicating to my friends and family the seriousness of this pathology, and how statistically a high number of ENS patients die within a few years of onset. I'm in my 30's.
I am also going to sue him for medical malpractice
The statute of limitations for medical malpractice in Hawaii is 2 years. You've got about six weeks left. If you haven't filed suit already, you'd better move fast.
Thanks, we just got through a mandatory MICP process that took 10 months, and the statute of limitations is on hold during that period, so I have close to another year. But I'm not going to wait that long though.
You don't say much about why exactly you decided to have surgery. What were your original symptoms, and was the decision to undergo surgery mostly yours, or did a Doctor persuade you?
Thank you for this very interesting AMA.
I talked with three specialist about how to improve my breathing. I moved to Hawaii after that time, and decided to have the surgery I had planned for 5 years, called an alar batten graft.
So, I did a lot of research on possible physicians and based on all of Dr. O'Donnell's stated credentials online, much of which turned out to be false advertising, I decided to have surgery with him, and a co-surgeon Dr. Susan Tan. Who he said was there, even though I never met her, and that she was there to give him "moral support".
This surgery I requested was very straight-forward. I told him my previous diagnosis, and medical history, and requested the specific surgery I had planned for five years. He agreed and then, remarkably, he did different surgery cutting out huges pieces of my nose and sinuses giving me this disease.
The original condition was nasal valve collapse, and I used breathe-right strips to alleviate it. The entire surgery was my idea when I presented it to the surgeon, and he agreed. If he didn't agree I would have gone with someone else, but he agreed to the specific surgery and then he did different surgeries when I was sedated. It was incredible horror that I cannot adequately communicate to you.
Another persone intentionally amputating super-critical breathing organs inside of your body against your will is a horror I wish on no one. But the doctor that operated on me for hours does this, he is now being investigated by the state medical board. But he is a very slithery guy so hopefully the medical board can catch him. They have more than enough evidence.