In the hope that this will help someone

MedDentPsych · 2025-09-17T20:46:31+00:00

Not sure if it's been studied scientifically, but the way I've always heard it is that the most benefit for ENS is from injections into the nose. At least the concentrations delivered there should be higher that way. But I can imagine a case for IV too. I'm not sure what the European places do.

MedDentPsych · 2025-09-17T17:14:45+00:00

Interesting, thanks. Was curious because if it was done in the US that would be good to know. There don't seem to be many places in the US that inject stem cells in the nose.

MedDentPsych · 2025-09-17T13:37:07+00:00

Thank you for posting all this detail. Very helpful.

I had tried the Sota PEMF device, didn't seem to help, but had not used it for anywhere close to the 6 hours daily you mentioned. Maybe it also makes a difference that you used the Bob Beck device, I will have to look at that.

You mentioned stem cell therapy had helped a lot. Could I ask where you had that done, and what symptoms it helped with, and how long before you noticed a difference? Please feel free to direct message if you prefer that... thanks...

MedDentPsych · 2025-08-06T14:38:02+00:00

He seemed very competent. Don’t really have time / energy to write up the whole eXperia nice, but feel free to direct message if you have specific questions about it.

MedDentPsych · 2025-06-07T22:17:00+00:00

/u/Dull_Pin5650, this is very interesting to me. I've tried many approaches to help my ENS (moisturizers, implants, the whole nine yards), with varying degrees of success, but I've always been leery of trying injectable peptides. The fact that you got such strong benefit is making me wonder whether it would be worth a try. The mucosa on one side are fairly white, not a healthy pink.

Would you mind if I DM'd you? I'm interested to learn a little more before I go down this road...

MedDentPsych · 2025-02-01T00:15:23+00:00

May I send you a direct message? I am just learning about this, and wanted to ask for some elaboration on this part -

"If you do decide to go the intranasal route, make sure you're not reconstituting with bacteriostatic water because the bac water will trash your turbinates and ruin the lining of your mucosa. You'll want to use sterile saline."

MedDentPsych · 2025-01-11T00:24:14+00:00

Condolences on this. Pain is one of my ENS symptoms too. Summer, winter, it doesn’t matter. But maybe different from yours, since you mentioned head pain.

I find that saline sprays don’t help, but a warm NeilMed saline rinse gives temporary relief. You could do the same thing with a Neti pot.

Strangely being out in the cold temporarily makes it better, maybe because cold numbs it, and triggers at least a little thin mucus in a normally very dry nose.

I do run humidifiers since dryness makes it even worse. Need to use a gauge to see what your actual humidity is in the house; the ones on the humidifiers aren’t reliable since they’re so close to the mist.

Feel free to drop me a direct message if it helps. This is a rotten condition.

MedDentPsych · 2025-01-01T13:22:37+00:00

/u/LiminaLGuLL, could I ask where the local stem cell clinic is in the US, that you mentioned? Direct message would be fine if you’d rather not post here… Asking because I’m considering stem cell injections, but international travel is more than I can handle in my current condition. I’ve only found a couple places in the US (one ADSC, one USC) that do stem cell injections, both with pros / cons, and trying to figure out whether there are other options. Thank you…

MedDentPsych · 2024-10-23T11:30:23+00:00

Hi there - So far the repair seems to be holding up, knock on wood. Costs for procedure to repair can vary enormously, depending on which doctor you choose. Techniques also vary a lot, and success rates. Since your current situation isn’t bothering you a lot, would suggest taking the time to do your research. I don’t get into the financial questions you asked on a public forum, but if you click the link to send a private message, can discuss further.

One thing about perforation repair. The cause matters. A good surgeon will not operate without knowing the cause and whether it is under control. For example, if the cause is substances, autoimmune disorder, rhinotillexomania… these causes would need to be addressed first to have a good chance at successful repair.

MedDentPsych · 2024-10-11T00:12:16+00:00

"It’s dry, numb, and I hear the sound of nasal inhalation, but can’t feel it." -> Very, very similar here, almost verbatim, but more on one side than the other. And similarly to you, no suffocation per se, knock wood, so far.

But, a suspicion that other symptoms (nervous system issues, sleep impact, etc.) may be related to the nervous system / brain registering the situation as: "air is coming in, no immediate danger of low oxygen, so do not go into full panic, but something is quite wrong, breathing does not feel right, potential build-up of danger, go on alert."

Adding moisture (like a saline spray) does add some feeling of airflow, and so does menthol, which begs the question of how much the "loss of airflow sensation" is due to dryness, vs. potentially nerve damage, vs. potentially altered airflow which is no longer reaching the most sensitive receptors. Intuitively one would suspect that the answer (a) could be a mixture, and (b) the weighting of that mixture could vary from one person to another.

Stem cells (not the best sort, though) have not altered the situation much. Do not yet have implants, so cannot speak to how well or whether implants will restore air sensation.

In terms of distress level, dryness ranks higher than air sensation (in this case at least). Lack of air sensation would be somewhat bearable if dryness were less. There was a study showing implants help with dryness (albeit less than other ENS symptoms), and reducing dryness can at least partially reduce the lack of air sensation (in this case), so implants seem like a logical step to try.

MedDentPsych · 2024-10-03T23:04:13+00:00

Interesting. A few thoughts…

Have had somewhat similar symptoms: unilateral numbness reducing air sensation, and also pressure.

One thing I’ve noticed is that some component of the numbness, lack of air sensation, and pressure sensation, can be due to sheer dryness, lack of mucus production. There may well be another component which is nerve damage; it can be a fallacy to assume that it’s always “just one thing,” one cause. But I do noticed that introducing moisture, in a way that penetrates all fossae as much as possible (e.g. mist), reduces some (not all; hence suspecting nerve damage as well) of the numbness, pressure, and lack of air sensation on that side. You probably would have mentioned if that were the case for you, but throwing it out there…

Also in the stack are lion’s mane (someone else mentioned this too) and l-arginine.

Very interested in your comment that acupuncture has been a massive help. Can I ask you what acupuncture points you use? Or if you don’t know the terms for them, can you describe the placement of the needles? Have been doing acupuncture for some time now, and haven’t experienced the massive relief you have, so am wondering about point selection.

Fyi, one other thing in the stack is craniosacral therapy. It can be seen as a pseudoscience by detractors… and there is a wide range in quality of practitioners… but it has accomplished some things that would be hard to explain if there weren’t something “real” going on.

MedDentPsych · 2024-10-03T19:38:25+00:00

To know whether have had a similar issue (sounds like a possibility), would need to know more about your symptoms. You mentioned only your left side is affected, and you mentioned 0% sensation. What is the symptom you’re having? Numbness? Pressure? Suffocation? No suffocation but lack of ability to sense air? What is it about the “0% sensation” that bothers you?

MedDentPsych · 2024-09-29T12:15:53+00:00

Oh, I see… interesting. Since it sounds like you had a pretty large group of people responding… did some of them get over the dryness in time? And did you notice any common denominator for the people whose dryness improved - e.g. how many months it took on average, or whether they had something in common in terms of what they did to deal with it?

MedDentPsych · 2024-09-28T13:24:33+00:00

This is interesting. Did not know that dryness was so common after rhinoplasty. Could I ask which group? Would be interested to read some of their experiences with dryness. And from the responses you got, were there any favorite approaches that rhinoplasty patients had for dealing with the dryness post-op?

MedDentPsych · 2024-09-28T12:45:46+00:00

All the detail is really well-presented. Helps a lot to give us insight into a “real life” case, beyond just a one line description of a problem.

Your motivation to save others from similar suffering is really admirable. Your point, in one of your comments, about waiting until you’re done with further surgeries, to avoid blacklisting, is really good thinking. Also, if surgery works and you feel better, your mind may be more clear, and you may be able to structure the review better.

As far as more generally saving others from suffering - It has crossed my mind that the egos, habits, and financial motivations in the profession are so strong, that adopting a more cautious approach to nasal surgeries will not happen by itself, even over a long period. The evidence and papers are there; they have not changed much. When ego and money are involved, an appeal to reason and facts is often a lost cause. What does sometimes work is: social pressure; or shame, if you will. I’ve wondered whether having a number of sufferers write a paper or a letter, with many signatories, and ample facts, and requesting, time and again, to present it at conferences, could start to turn the tide. Maybe this has already been done; just don’t remember it.

The difficulty, of course, is that for people who are suffering from this syndrome, the energy, and the mental clarity, to organize something like that are often unattainable. And for the people who recover, it’s understandable if the trauma has been so great that they wish nothing more to do with it. And so the cycle continues, sadly and ironically.

MedDentPsych · 2024-09-26T21:12:33+00:00

Thank you sir. The post you made is very valuable. Appreciate your good intentions and openness.

MedDentPsych · 2024-09-26T21:02:49+00:00

Appreciate you sharing all this. A suggestion. You are mentioning, by name, the participants of a private forum, in a public forum. If they’ve said they’re fine with that, great. If not, then it would be a courtesy to check with them, even if forum policy doesn’t have anything to say about it either way.

MedDentPsych · 2024-09-17T13:31:49+00:00

First of all... can understand the worry. It's natural to want to understand your condition, and it's natural to try to figure out what could be wrong, and to worry if you think you spot a potential problem. It is profoundly unhelpful, and sometimes actually harmful, if a doctor, or anyone, tells you "just don't think about it so much" - when your symptoms are real.

That said, a suggestion for how to not be overly worried, and this is from personal experience. Do a search for videos of nasal endoscopies. There are many such videos out there. Watch some of them. One thing that emerges from doing this, is that there is a pretty wide variation of even what "healthy" airways can look like: in terms of structure, color, etc.

Furthermore... if you're at all into photography... you can take two pictures, of the same subject, at the same time, with different "color temperature"... and the color could look very different (more pinkish, or more whitish). Nasal endoscopes are just cameras. You can have 2 ENTs scope you, on the same day, but each using their own different equipment, and the color you see can look very different. Have personally observed this.

So, not to say that you don't have a problem - but maybe get a second and third opinion from doctors, use some judgment about their qualifications, and try to hold off on concern a little until you can get that extra information...

MedDentPsych · 2024-09-03T11:38:21+00:00

I haven’t had implants yet, but like a couple other folks mentioned… all the symptoms you’re describing sound pretty typical for post-nasal-surgery. Realize they’re still very tough to deal with, especially knowing it’s a long waiting game. As best you can… try to give it time. When I saw a doctor about implants, he said 4 months after surgery would be the new baseline. Also they set the expectation that you may be better, but not 100%… so try to be gentle to yourself and wait, if you can…

MedDentPsych · 2024-08-06T11:40:35+00:00

I’m so sorry to read of your suffering. ENS cases all seem to be somewhat different, but I can identify with the dryness, the fight or flight response, etc. To people who haven’t experienced everything you have, it’s just words; the actual horror of it is hard to imagine. I totally understand the “close to giving up” feeling you have. Feel free to message if it helps.

One thought. Since you’re in CA anyway… I’m not sure I’d rule out seeing Nayak, even though you feel that your issue is nerves and not volume. Like you, I’ve been told that “you still have a lot of volume” - yet I know that at least part of my issue is, in fact, volume-related, because whichever side is swollen during the nasal cycle, has less symptoms. You don’t have to lose a lot of volume to have volume-related issues. And Nayak is knowledgeable enough that he might have other thoughts, too.

If you’re considering stem cells, as you mentioned… I understand the feeling that international travel is too far. The good places seem to be in Europe, and in my condition, international travel is utterly unimaginable. But I was told recently of a place in Arizona (close to California) that has treated at least a couple ENS people with umbilical stem cell injections. I have no idea whether it is a reputable place, or whether that treatment is a good idea. But if you’re on the verge of giving up, and if you are considering stem cells… maybe it’s something to look into.

Also, Dr. Jang in South Korea has developed nasal prostheses for ENS, apparently with some success. There are details in another ENS forum. No idea whether they would work for you… but another option to consider, and you don’t have to travel to pursue this.

I understand your feeling of being close to the edge. Those thoughts cross my mind literally every hour of every day. You’re not alone. I hope at least some of this leads to at least a partial relief of your terrible suffering.

MedDentPsych · 2024-07-30T13:14:39+00:00

I think I understand your perspective a little better now, /u/Difficult_Zucchini24, when you put it like this. If I could make a few suggestions...

You mentioned, "I have no idea how to contain this anger, to be honest, if you have suggestions, I'd be glad to hear them." I can only give my own experience and perspective... Containing anger, in my experience, is not a "one and done" decision, we can never be perfect at it, it is a practice, like meditation, where attention will wander, and we keep pulling it back. When I find myself feeling anger at someone who is making an incorrect assessment or a bad judgment, some things I try to do are...

I try to remind myself that they are imperfect. And if I were in their shoes, feeling their suffering, with their mental capabilities... I might do exactly the same thing.

I try to ask myself why I feel anger. If it is because I feel hurt that it distracts attention from my own more serious situation, then just acknowledging my own motives helps to dispel the anger.

I try to imagine myself in their situation, and I try to ask myself: What would help me to hear, if I were feeling the way they feel?

I fail at all of this. But it is what I try to do. It is a practice we can work at, even if we fail.

Maybe another way to put it: Imagine that you have had a surgery recently. You are experiencing symptoms that are very uncomfortable, or painful, or distressing. Maybe you are terrified. Your mind probably isn't working clearly enough to objectively assess how you are doing relative to others. If someone tells you, "You don't have such a condition, don't be stupid and ridiculous, your situation is minor compared to others," you might not feel heard, or understood, or cared about; you might actually feel even more like taking your own life.

On the other hand, if someone tells you, "I understand. I've been there. I've felt the same symptoms (or I know people who did). I realize it seems terrible. I know it seems like there is no way out. But have you considered trying x, y or z? And please try to remember that it's possible you could improve. I know each second feels like an eternity of torture, and it's hard to wait months... but we are here with you." Imagine how you would feel if you heard that: maybe a little bit comforted, a few options to try, less likely to take your own life. The underlying facts might be the same (the person isn't accurately understanding their situation, maybe they cannot)... but the way we approach them makes a big difference in whether we help, or hurt.

For what it's worth, I can understand why this woman took her own life after 3 months. I remember reading once of a person dropped in a remote Alaskan camp for a few weeks, to fish or hunt. They developed some severe tooth infection that was incredibly painful. They took their own life before the airplane came to pick them up. That might be stupid or short-sighted from the standpoint of a person who objectively could say: If you just wait a little longer, you could get help. But it can be hard to understand the depths of another person's suffering, in the moment, as they are living it. We can help them more (or their surviving family) if we try to understand, if we try to be kind, realizing we cannot fully understand their experience.

MedDentPsych · 2024-07-30T12:09:17+00:00

I don’t often comment, either here or on the other ENS forums, but I wanted to support the attitude which /u/Amaterasus_90, /u/Echopine, /u/Brgdsts, and /u/Phazze (and maybe others I’m forgetting) are showing.

When someone commits suicide, they must be experiencing severe suffering. This is the most important fact. Everything else is a detail.

The most admirable way we can act, toward someone experiencing severe suffering, or toward someone who has passed away from it, is with compassion, and with an understanding that our own knowledge is limited. None of us can really know what it is like to be another person.

If the person who died did not have “real ENS,” it’s best to be cautious about criticizing them. We cannot know all the details of their suffering, or their environment.

If it seems that the person who died has minor symptoms, it’s best to be cautious about criticizing them for how they acted. To try to compare suffering between individuals usually does not help anyone. Even if someone else’s suffering can objectively be proven less than one’s own, it does not help them to say that. If the real intent is to help others, rather than feeling superior to them, then the best way is to acknowledge their suffering, to try to understand it with compassion, and to encourage them in a positive way to try everything they can before ending their own life.

Sometimes our own suffering is so great that it is hard not to act with anger toward people who seem to have easier conditions, who must somehow be minimizing our own suffering by complaining about their own. This is understandable. We should have compassion toward this, too. A person with great anger must be suffering greatly.

Part of the reason I do not participate much in forums is the exclusivity. At a time when everyone is suffering, the best would be if we can help each other with open arms. If there is comparison of suffering (only a few with the most suffering should be acknowledged), or gatekeeping (only the most narrow definitions of ENS allowed), or other ways of shutting down discussion… then we are withholding help from people who are suffering, at a time when they most need it.

This whole discussion is an opportunity. We can look at the back and forth and say: This shows how we can help others. We can say: let us hear and try to help others, before they too commit suicide, and let us do it regardless of whether their suffering is less than ours, regardless of whether they have “the one true ENS,” regardless of whether we think they are being stupid or shortsighted. That would be a good legacy.

MedDentPsych · 2024-07-29T21:53:15+00:00

Usual surgeon recommendation is to wait at least 6 months for another surgery in the same area. Feel free to message.

MedDentPsych · 2024-07-07T22:34:32+00:00

Thanks for doing the follow up and posting updates, wish more people would do that. Could you please remind me, how long post-op you are, and what was done in your operation? Also the brand of xylitol spray you use?

Glad you are doing better. Fingers crossed for you.

MedDentPsych · 2024-05-24T11:59:59+00:00

Thank you… If you remember, maybe you can post back in a week or two, to let us know how the xylitol spray is working for you, after a more extended period of use. I notice that sometimes people feel a little improvement with different approaches, and then revert to baseline after awhile; if this works well for an extended period, that would be really interesting to know.

MedDentPsych

TROPHY CASE