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.

Is there a way to get in contact with him?

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

Thank you for your support it means a lot to me 🙏🏻

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.

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.

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

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.

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?

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 ♥️

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..

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 😭

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.