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BoJo2736 t1_jaed38k wrote

Get a lawyer. It seems like there are people who could be held at least partially responsible.

204

Archangelthrowaway OP t1_jaeoiey wrote

I tried for 2 years everyday to get a lawyer and even though they always told me clearly negligence occurred, because plastic surgery cases are notoriously hard to win and I had signed a consent form giving him free reign to do any medical procedure he deems necessary, it would be nearly impossible to win in court. I had letters from doctors diagnosing me with ENS, but attorneys would tell me they could find a doctor on my side and one against me so it would likely be an uphill battle since ENS is not a well recognized situation. When I tell you I talked to at least 100 medical malpractice attorneys I’m not kidding. Unfortunately the time jurisdiction is over to file suit since it has been 2 years.

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MyVoiceIsElevating t1_jaf0wuh wrote

What a racket, screw somebodies life over and their ass is covered by a blanket document. I sure hope you have made it very well known online who this physician is and the damage they have caused with no accountability

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fatherofallthings t1_jaedotz wrote

This is the way. I’m honestly shocked OP hasn’t mentioned this.

I’m not a “sue them” type of guy, but if someone made it so I can’t BREATHE, damn right I’d be suing them for every penny they have.

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metalmaxilla t1_jaeqst3 wrote

Patient-funded stem cell research is a SERIOUS red flag for snakeoil salesmen preying on people's desperation. This is just not the way legitimate things are done. Harvesting and using a patient's own stem cells allows them to circumvent regulations that are in place to protect you.

As you said, ENS is not that rare. If a university is on the cusp of achieving a legitimate cure, they're going to finance it themselves... not make you front the cost. Universities love advancing fields of medicine, but it doesn't involve the patient's dime (e.g. face transplants). Regenerative medicine is going to be the future, but we're not there yet, and you paying $4mil is not going to push what they're doing into the realm of legitimacy. They would be more than happy to finance your procedure if its success would enable them to claim that advancement.

Very sorry you've been enduring this, OP.

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Archangelthrowaway OP t1_jaevm44 wrote

So the university’s explanation to me is basically : we have a lot of organs we are working on and we will go with whichever ones have funding behind them. They applied multiple times for grants for turbinates but got rejected. They did get approved for livers and kidneys though I believe due to it’s more widespread need. So that’s why I’m kind of in this situation. Thank you for reading my story ♥️

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EmotionNo3943 t1_jaefmfr wrote

Hit up Mr. Beast or celebrity of choice or sue the piss out of the company that did the nose job

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nicarox t1_jaexobd wrote

Hit up Mr. Beast. Not even joking.

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NaraFox257 t1_jaf11xp wrote

This. That dude could literally hand you the money and profit while doing it if he makes a video. May actually pan out for you, no joke.

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sterboog t1_jaeqym5 wrote

This is clearly a SCAM.

The first post was them saying "I have this thing and I'm going to kill myself (physician assisted suicide)" over a non-terminal condition.

Now its "It can all be OK - all I need is $4 mil" and have 'suggested' a gofundme as an idea.

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Archangelthrowaway OP t1_jaevawi wrote

I understand you’re concerned but it’s opposition like this that is the reason for downplaying patients’ suffering with empty nose syndrome in the first place. I’m free to share my story and ask for advice. How else are people with medical conditions that have no cure supposed to go about solving it if they don’t ask the public for help? Clearly doctors and lawyers aren’t doing anything. I’m basically relying on empathy from strangers and researchers at this point to keep going. I can ask for advice..

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Archangelthrowaway OP t1_jaew5b8 wrote

PSA: if someone wants to donate $4 million I wouldn’t take the money. I’d ask them to contact wake forest university’s institute of regenerative medicine and donate on behalf of turbinate research for turbinate transplants. Is that enough proof for you?

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sterboog t1_jaewi2r wrote

No, because not only is that an unlikely scenario, but those are just words until you post notarized transaction records to prove it. It also sounds like you'd take the money because of the gofundme comment.

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Archangelthrowaway OP t1_jaewwni wrote

What is an unlikely scenario? That I am in contact with researchers at a university about a cure for a rare medical issue? Patients do that all the time when hospitals fail them.

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sterboog t1_jaex5yg wrote

What? All I'm saying is that you're feigning a disease, trying to go viral on reddit to drum up support in the hopes of leveraging that into a successful gofundme so that you can make a cool 4 mil.

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Archangelthrowaway OP t1_jaexmi2 wrote

Ahhh yes because no one in the United States has ever been failed by the medical system and every medical ailment has a cure so no one should ever go about finding a cure their own way backed by a legitimate research university (WFIRM) …got it …. /s

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cptbeard t1_jaf0nph wrote

yes "clearly", what a keen eye. I'll be clutching on to my millions and not contacting any universities.

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Deep_Wrongdoer4991 t1_jaekcvr wrote

I suggest bringing your story to tiktok, something like this would hopefully blow up and get a lot of attention from ppl to help fund the project and also lawyers that can help you. In the meantime definitely set up a gofundme Wish you the best of luck 💛💛

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Archangelthrowaway OP t1_jaf0p70 wrote

I’m definitely going that route as an option. I am in an empty nose syndrome support group that is international. We are currently brainstorming fundraising.

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AnimatorDifferent116 t1_jaenzsj wrote

Even if they get the funding, it will take time to finish the project, maybe with negative or no result at all... even if the results are positive, are you willing to be the first volunteer to try this new treatment? I'm just saying it may take years.... i have a doctorate in Human Genetics and worked with stem cells quite a lot in my graduate studies.

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Archangelthrowaway OP t1_jaeovmh wrote

Yes I’m desperate and willing to be the first to get a turbinate transplant made of my own stem cells. I just want to stop suffocating 😭

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AnimatorDifferent116 t1_jaeq95p wrote

Tbh though I think the chances of it working can be quite high. It makes sense, at least on paper.

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Sea-Slip598 t1_jaf05d4 wrote

Look though their post and comment history. Op is most likely making this up.

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Archangelthrowaway OP t1_jaf0g9d wrote

They deleted my original post that went viral because mentioning suicide is a violation. Here is the link for proof:

https://www.reddit.com/r/tifu/comments/oom1qv/tifu_by_getting_empty_nose_syndrome_after_a/?utm_source=share&utm_medium=ios_app&utm_name=iossmf

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Sea-Slip598 t1_jaf0kta wrote

Yeah I looked through everything. I’m not 100% that you’re lying but it doesn’t really add up.

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kmai270 t1_jaez7ii wrote

Jesus

I'm sorry to hear this. I know that nose surgery journeys are really difficult here in the US.. especially docs make their unhappy patient sign NDA

I don't have anything to add to help, except I'm sorry that this is happening

4

FellowConspirator t1_jaey35z wrote

Sue the plastic surgeon for $4 million in damages, plus pain and suffering. They have insurance, they are liable, and you have an estimate how much it will cost to fix it.

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Archangelthrowaway OP t1_jaeyfle wrote

My jurisdiction ran out in Florida (2 years). I tried for 2 years everyday to get a lawyer and even though they always told me clearly negligence occurred, because plastic surgery cases are notoriously hard to win and I had signed a consent form giving him free reign to do any medical procedure he deems necessary, it would be nearly impossible to win in court. He’s lied and said he didn’t do the turbinate amputation. I had letters from doctors diagnosing me with ENS, but attorneys would tell me they could find a doctor on my side and one against me so it would likely be an uphill battle since ENS is not a well recognized situation. When I tell you I talked to at least 100 medical malpractice attorneys I’m not kidding. Unfortunately the time jurisdiction is over to file suit since it has been 2 years.

0

Random_Guy_47 t1_jaeybsz wrote

Have you tried getting medical treatment outside the USA where prices are actually sane?

If it costs 4 million dollars it will probably cost about €400 in Europe.

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Archangelthrowaway OP t1_jaeytul wrote

So no one has invented a turbinate organ transplant yet. Doctors have tried to create cartilage implants to pump up the size, but since mine were amputated there is nothing to plump up. I need the organ in its entirety. Italy is interested in this but so far no one has done it yet. The usa is also interested (wake forest university’s institute of regenerative medicine) but no one has gotten the funding yet.

3

AlligatorTree22 t1_jaezfb5 wrote

There is no cure/treatment yet. This is allegedly for the research to create a treatment.

2