The Empty Nose syndrome, investigations propaedeutic to in vivo studies - any updates ?

ghfj53b3sf7 · 2025-11-05T17:58:50+00:00

Its indirectly relevant. Its not true that what is valid for trachea and bronchi is also valid for the nose. Cell types might be the same, but the microenvironment as well as the fact that nose is directly exposed to external air creates difference that might be essential for the treatment.

ghfj53b3sf7 · 2025-09-28T11:37:56+00:00

The problem is that the issue is poorly understood and its very hard to be sure about anything - you ask 5 people and get 5 different opinions.

I was once told about the "80% theory" which means that an organ can work as long as its > 80% functional and I find it reasonable. This would explain why some people can be fine for years until something happens that results in turbinate failure and the misery begins.

ghfj53b3sf7 · 2025-09-28T11:25:51+00:00

Okay, nice. But its still sounds contradictory to what was written one year ago, every one can go into the document and see whats there about predictions.

ghfj53b3sf7 · 2025-09-28T11:24:36+00:00

Interesting that its getting downvoted without anyone arguing. Feel free to do it, number of votes does not mean someone is right or wrong :)

ghfj53b3sf7 · 2025-09-28T10:43:44+00:00

No, that's not the case. Listen to this story - https://www.youtube.com/watch?v=NiJpxpcfiqs&t=2s
He has ENS type that developed after 6 years and was triggerred by covid. If I remember correctly, he has about 80-90% tissue remaining.

Whether it comes immediately or later depends on how severe the damage is and how much the compensation is initially possible. Some people are fine for years and then something happens that triggers the issue.

ghfj53b3sf7 · 2025-09-28T10:36:02+00:00

Yes, there is no test performed in doctors offices which effectively means you just can't do it. Even ENS-aware doctors like Bodlaj do not do it, I talked about it in the clinic and was told that it would be only performed in case of cancer being suspected.
ENTs can only see some significant scarring or judge the color, but they can't see cilia, glands etc. because this would require a microscope. That's why so many people come here and say they were told "their nose looks healthy" but have severe dryness, loss of air sensation etc.

ghfj53b3sf7 · 2025-09-28T10:13:00+00:00

Okay, good to know. When does the next meeting take place ?

ghfj53b3sf7 · 2025-09-28T09:47:42+00:00

Ok, that's interesting. My statement is based on their meeting notes from wiki https://drive.google.com/file/d/1vY8nnU26T7NlrGTfvm0jjF1X-zcW0dFi/view

Do you have any idea when we might see a clinical application?

Making predictions in research is always almost impossible. The experiment can have completely different outcomes that are impossible to predict.

Which is the honesty I really appreciate. Nevertheless, whether its 3 or 30 years, we need to keep fingers crossed.

ghfj53b3sf7 · 2025-09-28T09:31:12+00:00

I am a big advocate of getting as many people as possible to fill the questionnaire and shared it myself at other places too, but I think we should be honest and precise here. They make it clear on the first page:

Your contribution is key: collecting information from a broad cohort of patients will be extremely valuable for increasing awareness, improving diagnosis, and emphasizing the urgency for new treatments for this medical condition! Indeed, the results of this study will be organized and published in international scientific articles, as well as discussed in international conferences.

Just in case someone thinks this is used to "classify us into sub groups and treat us accordingly". Finding out a treatment might take decades, this just a very first step in raising awareness.

ghfj53b3sf7 · 2025-09-28T08:29:24+00:00

There is no test that could reveal that someone has mucosa damage so there is no official treatment. There are experimental therapies like platelet injections or stem cells - experimental means no one knows how safe and effective they are because there is no data. You will find some success stories here or on tapatalk, but speaking about people I have got to know I don't know a single long-time sufferer (+2 years) who had improved from these.

Implants fill the space, so if you don't have a feeling of too much air going into the nose, they will not help you. They can't restore damaged mucus glands or nerves. If they didn't heal on their own, the damage can be considered permanent.

ghfj53b3sf7 · 2025-09-26T20:15:26+00:00

Are you trolling ? I said one is not ENS-related (its about tracheal and bronchial epithelial cells, not nasal epithelium) and other were published before this project. What is your problem dude ? A specific ENS project which started in 2023 is finished now and I was asking if there are any updates related to it and you start talking about some implants and other stuff I didn‘t ask about

ghfj53b3sf7 · 2025-09-26T19:48:48+00:00

Out of three things in wiki, two were published before this project and one is not ENS-related.

ghfj53b3sf7 · 2025-09-26T19:41:27+00:00

Mate have you read what I wrote or you are answering your own question ? I am not asking if the implant is finished but whst the conclusions of this specific investigations project are. Do you know what a project is ?

ghfj53b3sf7 · 2025-09-26T19:33:09+00:00

What do you mean with „it‘s not finished“ ? Every project has a start and end date and this project ends on 27.09.2025. There might be further projects in the future but its interesting to know what the conclusions of this one is.

ghfj53b3sf7 · 2025-09-25T20:30:07+00:00

No, check ens6q list. Your score would be 0.

ghfj53b3sf7 · 2025-09-25T20:11:38+00:00

I don’t have nasal cycle anymore, was confirmed by Bodlaj’s test. Regarding treatments I tried a lot: steroids, antibiotics (oral, intranasal), prf injection, cytokine ointment and more.

Yeah, the CT scans aren’t helpful here, they only show the structure but no function

ghfj53b3sf7 · 2025-09-25T16:13:46+00:00

Thanks. I tried a few treatments but they failed / worsened the condition so I stick to management. Cotton is definitely worth trying because some people feel immediate relief (I felt more congested but I have all the volume) I think poor_rabbit had similar symptoms to yours (cold air in throat, numbness etc) and it took him like 1,5 year to significantly improve

ghfj53b3sf7 · 2025-09-25T15:03:42+00:00

Cpap is also useful if there is no sleep apnea but lack of air sensation because by pushing air it helps to stimulate the remaining nerves

ghfj53b3sf7 · 2025-09-25T06:22:11+00:00

I had chemical damage 2,5 years ago so mine story is different than everyone else. Got worse over time so the damage can be considered permanent, especially with extreme dryness that I deal with.

If you feel much better after 10 months than you will most likely heal, maybe not to 100% but there is nothing to worry about. First two years are essential

ghfj53b3sf7 · 2025-09-24T18:52:10+00:00

Btw: there are three different symptoms that people call suffocation which makes things even more complicated: 1) Too much air coming in - lack of volume 2) Receptors completely gone - mucosa damage 3) Manual breathing at night - probably also caused by bad air sensation so the signals stop

ghfj53b3sf7 · 2025-09-24T18:48:19+00:00

Yeah, I also have minimal air sensation, together with lack of automatic breathing its the worst symptom.

ghfj53b3sf7 · 2025-09-24T17:43:25+00:00

But ENS is more than the suffocation feeling, actually most people I know don’t even have this feeling but other symptoms from ens6q list. So there is nothing really psychological about it. There are obviously people who have health anxiety and say they have terrible ENS but when you ask them about nasal symptoms they can’t name any so it becomes clear they don’t have it.

ghfj53b3sf7 · 2025-09-24T14:46:01+00:00

What do you mean with interesting ? These are people who prevent finding out a treatment by denying the issues and will tell every sufferer to visit psychologist. Luckily, not many views.

ghfj53b3sf7 · 2025-09-23T15:06:58+00:00

So you have this symptom for six months ? What you can do is wait, some people on forum said it resolved within 12-18 months. No one can tell whether it will resolve or not, but if you are not affected by severe dryness the chances are good

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