Studies on nasal complaints in patients with ectodermal dysplasias have shown that although structurally things appear relatively normal inside the nose, patients often have problems with dryness, crusting and rhinoliths. You may call them “nasal rocks”, concretions or simply big boogers!
Many parents have expressed great difficulties in managing their children’s concretions and crusting in our private Facebook group for families affected by hypohidrotic ectodermal dysplasia. Hard nasal “rocks” can grow to tremendous size requiring frequent removal, both by parents and healthcare professionals.
We have a new library article titled “Nasal Irrigations” written by Dr. Brandon Hopkins to help you manage at home the symptoms and complications caused by the concretions. He is a pediatric ear-nose-throat doctor (otolaryngologist) at Cleveland Clinic Head and Neck Institute who also serves on our Scientific Advisory Council. He shares in the article proper techniques on nasal irrigation and nasal rinses.
Importance of Removal
Nasal crusting is caused by abnormal mucus production or excessive accumulation. The mucus is thick and does not drain normally. Large crusts may form which may interfere with breathing or emit a foul odor. Parents frequently report these odors from their children’s noses.
My son is 12 and uses a Neti Pot. You won’t believe what comes out of his sinuses. Seriously, I’ve never considered that something so large could be inhabiting my son’s sinuses . . . know that it IMMEDIATELY takes away the smell.–CH
While the formation of these rocks or concretions seems to improve with age, problems with nasal obstruction and crusting commonly do persist in to adulthood. They are also predisposed to frequent sinus infections.
Saline Solutions
Dr. Hopkins recommends a recipe for a salt water rinse in his article on nasal irrigations. Perform rinses regularly to improve blockage and dryness symptoms. Many of our parents can attest that rinses are very effective in dislodging these blockages.
When my boys get stuffy, we will use repeated gentle saline misting every few minutes to really soften things up, and then it is easier to extract anything built up in there. Sometimes it will just pour out if they lay down for a bit. –RS
One parent said she made it a point to always irrigate her daughter’s nose before dental visits. Doing this helped her daughter breathe better when the dentist was working in her mouth!
Dr. Hopkins recommends that parents do not forcibly hold down their children when preforming these rinses. Instead, consider allowing your child to be in a sitting or standing position. This will make the nasal irrigations easier and more effective for both your child and yourself. Your child will be grateful for the experience and its effects.
We have now gotten to the point that we do a Neti Pot every night before bed, and it is amazing how clear his nose is! Pretty much every time we do the Neti Pot, we get concretions out and afterword my son says, “I CAN BREATHE! –MP
Alternative Nasal Irrigations
You might also consider using humidification to remove the nasal rocks. We recommend using cold humidification because it is safer to use cold steam than hot steam. Children can pull over the hot humidifier and subsequently acquire bad burns.
Swimming and bathing can also provide relief. Parents report that when their children soak in a bath or swim in a pool, it helped nasal irrigations to occur naturally.
Sound Off
Learn more from Dr. Hopkins’ article about how often you should irrigate, the benefits, recipe and proper method. What have you found to be helpful to clear out the nasal rocks? Tell us in the comments below! We aim to ensure that all of your health needs are being met and to keep you updated on all the latest information.
Download How to Irrigate Your Nose
I am almost 70 yrold female. I have been to Dr numerous times with a horrible taste in my mouth. Mostly during the night and especially upon waking in the morning. Sometimes so bad during the night I need to get up and rinse my mouth out. It feels like it comes from the back of my throat area.I have dry crusties in the morning like bits and pieces. Phlegem upon waking too. These conditions are not evident during the day so think it has something to do with my lying down in bed. Have had numerous scripts of Nasonex but does very little if anything. Just purchased a neti pot and not seeing a lot of difference. Please advise
Hello. Thanks for reaching out with your question. Are you affected by ectodermal dysplasia and if so, which type? This might help us better understand what could possibly be causing your issue. Thanks, Jodi, NFED, Director, Marketing and Communications
Elizabeth Reed: I just stumbled on this page but here is my advice: Your condition may be environmental. Since your problem only happens when you go to bed it may be something in your bedroom: curtains, sheets, blankets, even the mattress. I once had an asthma issue and discovered mildew growing on the back of my headboard – cleaning it off with Lysol stopped the attacks.
Maybe Tonsil stones?
Reading this helped me thanks
Helpful thanks lady in gentleman 😊
I was having the same issue. At first I could not get anything to come out to save my life. I was literally poking and prying in my nose to get these boulders out. I felt I had no choice bc nothing was helping. I had that terrible taste in the back of my mouth almost always a metal type taste in like back of the throat how you described. My nose was always plugged up to and I mean PLUGGED UP!!!! No matter how hard I would blow nothing would come out. So plugged up that blowing my nose only made my ears pop hard sometimes to the point where it hurt my ears. I tried to use a netti pot eventually as a last ditch effort and again just made my ears pop and hurt and nothing would come out of my nose. Would only wind up coming out my mouth when I stopped from the pain of the pressure. Thr only thing that I feel loosend everything enough for me to finally be able to regularly irrigate I’ll call it was to literally use a pimple popping tool (brand new obvious) and pry the stuff put. I would like try to scrape it off thr wall and pull it out. At the same time I say this I want to say I really don’t recommend it bc it hurt like hell most of the time and idk if I did any damage in the process but I literally tried EVERYTHING and it was getting to the point where it was causing me more than discomfort. Eventually I was able to pick out enough of it that for thr first time I was able to blow the rest of it out into a tissue and let me tell you the first time it hurt so bad I screamed at the top of my lungs when it came flying out. Literally the size of a dollar coin really dark from blood you could tell. Very hard and at the same time slimy and disgusting. Just the sight of it made me gag. But ever since then I been able to regularly blow it out if I blow hard enough enough times eventually it comes out. Sometimes I have to keep I having really hard thru nose and exhaling for a while before it’ll come out. If it’s been a few days since I did it. The drier it gets the harder it is to release. But even still everytime I blow it out now it’s huge and hurts a little coming out bc of the sheer size of it but at least I can blow it out now. I think the key is to get that initial blockage out and then after that regular “maintenance” will be necessary and alot easier. Idk how long ago you posted this and I hope it somehow finds you again but I hope this helps. I had got to the point I was so concerned about it initially I was saving it everytime I’d get a bunch out onto a big paper towel ina big freezer ziploc bag. Took it to the hospital pretty much told them thr same story and showed them and they told me it’s normal. I still to this day keep saying it’s noway this is normal everytime I blow one put but they say it is. I also noticed I have a deviated septum if that’s what it’s called where the separation in my nose doesn’t exist. If you look in my nose can see clear from one side to the side. Idk if that has anything to do with it. But it’s Luke that void now is constantly filled with this crap and that’s why it’s such bug pieces when I blow them out. Idk I still don’t think this is normal but at least I can’t elregularly blow them out now so I just deal with it. Hope this helps somehow
I use 2 cups boiled water to 1/2 teaspoon salt and 1/4 teaspoon baking soda. I keep in a sterile container and flush each nares with 5 ml of solution using Walmart nasal irritation syringes prn
See a ENT
Try Nasaline syringe – much easier and less messy than Neti-pot. I am 67 yrs old and had sinus issues all my life until my ENT performed in-ofc sinuplasty. He prescribed compound Gentamicin & Budesonide capsules in the saline solution from Advanced RX, Plymouth Meeting, Pa. morning and night.
Thank you for sharing what has worked for you. ~ Jodi, NFED, Director, Marketing and Communications
I know this is old, but I have a deviated septum. I am a mouth breather and it’s uncomfortable and gross. I use a Neti pot, it doesn’t work. You mentioned something in office. Could that help with my problem. I live very close to Plymouth Meeting if you like your dr., please share. I’ve never had a good ENT. I’ve tried and gave up.
Hi, Sue. Sorry to hear you continue to have issues. We are not in a position to be able to say if a particular treatment would work in your case. We encourage you to keep trying other ENTs to see if you can find answers. I’m sure you are frustrated but keep asking. You might consider treatment at local university, as perhaps they would have a team that could help you. Good luck! ~ Jodi, NFED, Director, Marketing and Communications
I know you have mentioned about your nasal situation sometime ago but I have a couple questions about what you do with my situation. I have my nasal passage dry with I would assume crust from you kiss blowing out and then I guess whatever I don’t get out dries up on the side of my nasal’s and get hard and I’m trying to figure out what are the best remedies to get it stuck from the side of my nasals so then I can use something to suck it out so my question is what would you do in this type of situation
I use Flonase and every morning the netti pot with peroxide and water mine is do to having a sinus infection and getting back injections I told everyone from registering to Anastasia before I left I said I wanted to talk to my Dr about the antibiotics I was on for a sinus infection he flipped out and was screaming at the nurses asking who I told and I said all of them which I did he said I wasn’t supposed to get any steroids injections while I had a infection it’s been 4 years it hasn’t gotten any better only worse and he is not my pain management dr anymore. He sent me somware els
Should you switch nostril sides eg: do the right side then do the left side?
Hi, Ken. If you download Dr. Hopkins’ article, you can read more about what he suggests you do for treatment. Good luck! ~ Jodi, NFED, Director, Marketing and Communications
I use Naseptin Cream, it’s the only way I can loosen it to come out. Mine,are usually the length of my little finger
I was referred to Virginia Mason and later to University of Washington, both in Seattle. Had to have a serious sinus surgery to get rid of infection. ENTs at both hospitals recommended using Ponaris drops to prevent dry crusting. It helps a lot but I had to order it through Walgrens since no one carried it in my city. Hope this is helpful.
Hi, Dianna. Thank you for sharing what has worked for you. Hope your surgery was a success and you are infection free! ~ Jodi, Director, Marketing and Communications, NFED
You can buy Polaris drops at Walmart Pharmacy..it is behind the counter..just ask them for it..
Hello, I’ve been dealing with a very foul smelly odor coming from my right nostril. It started in 2009 from a failed root canal treatment that wasn’t discovered by CT scans by the dentist. It was discovered by a cone beam scan from the endodontist in 2016 that showed build up of infection in my right nasal cavity. The tooth was retreated..then later removed. I’ve been to 3 different ENT doctors and they all say my sinuses are clear. And antibiotics, nor medicated nasal rinses, steroids have helped me. I get nasal crusting, backed up drainage that sometimes comes out after neti pot…but the smell remains. It has ruined my social life. What can I do?
Hi, Denise. We are sorry to hear about the issues you have been having. What type of ectodermal dysplasia do you have? ~ Jodi, NFED, Director, Marketing and Communications
Denise,
My problem parallel yours so much that I wish you and I could communicate about what types of treatment options to pursue. I also had a cracked tooth that became infected and perforated into my sinus cavities. My dentists ignored my complaints until I switched dentists. The new dentist saw the crack in my tooth with a laser beam. Even after the tooth was extracted, the tonsil stones and foul odor remained. After diagnosing my condition as Vasomotor rhinitis, my present ENT doctor just threw up her hands and said that I have to live with it. I use nasal irrigations constantly to no avail. I have used saline and alkalol to no avail and would like to expand my treatment options. Antibiotics don’t seem to help at all. Like you, my social and professional life is in tatters. I am still looking for other solutions. Just to let you know, you are not alone. If you have any desire to share your thoughts and options privately, please PM me and I will respond. Wish you the best of luck. Thanks. Memma.
I had the same thing. It ended up being osteomyelitis in my jaw bone from the infected root canal that festered in there for many years. I have had 3 surgeries in the hospital. They removed my jawbone and replaced it. Have an MRI, hopefully it will tell you.
Hi Denise,
I had a very similar experience after a root canal. I had developed a severe infection due to my sinus being punctured. I was given antibiotics and prednisone but I was still sick for months with the left side of my face in the most extreme pain. The left side of my face felt as if the bones were broken.
I was so sick and nothing was working. I finally found another ENT who said I was never given the correct antibiotics. I was given a 10 day supply of clindamcychin 150 mg pill 4 times a day.
I was told my type of infection does not show up on a ct or cone beam scan. My ENT was just super knowledgeable.
I also had a neighbor who had a severe bone infection from an implant . She went months until she found a doctor to treat her properly . She had to a few types of antibiotics one was also for a fungal infection. She also used ozone therapy to kill the infection that she felt was still present even after the antibiotics.
Good Luck !
I also have this problem it seems to be in my nose and throat. I went to ENT with some bleeding in both nostrils. He said my nasal was very dry. I believe this was caused by the nasal rinse mixture being too strong. I stopped the rinses and started to use steam and to moisture. This did help with the dryness but I continue yo have the foul smell in my nose and throat. This has also affected my social life. Others can smell it from a distance. I was told that I have inflammation. I believe eating lots sugar is the culprit. This seems to make it worse. I had many CT scans but found nothing.
I am a 46 year old female and about 2 1/2 years ago the inside of my nose started crusting over. When I saw 2 different ENT doctors they both tried using tweezers to pull it out but couldn’t . One ENT doctor did biopsy of the inside of my nose. The biopsy said it was inflammation. So I had to go to a dermatologist. She gave me some facial cleanser. Still didn’t help. I didn’t get diagnosed with anything. With my biopsy showing inflammation doesn’t that mean something else is causing it?
Hi Angela,
boy that is a good question. Why don’t you discuss your biopsy results with both the ENT and Dermatologist? Please keep us posted if you learn anything that would help other families. I hope this crusting (your skin dried in your nose) resolves soon. It must be uncomfortable. Did your ENT recommend nasal irrigation to loosen the crusting? Keep me posted. Please stay safe and healthy during this challenging time. Mary, NFED Executive Director.
Forgot to tell that the crust turned out to be my skin.
Could you expand on this what do you mean, your skin? I am trying to figure out the reason for my own crusting.
How much Salt can I use for my Sinus Rinse made by NeilMed
Hi Boll,
Check out this article on the NFED website… you will find everything you need to know. https://nfed.org/learn/library/how-to-irrigate-your-nose/
Please let me know if you have other questions. Take care during this stressful time. Mary, NFED Executive Director.
1 packet per 8oz bottle which neilmed comes with the bottle..I use it 6x per day & its the best advice my ENT ever gave me. I also add 1 capsule of Budesonide inhalation suspension .25mg 2x a day for irritation & inflammation helps with crusting also.
I lost instructions. How much water, salt to use in Neti pot
Hi, Louis. You can find the instructions in this article: https://nfed.org/learn/library/how-to-irrigate-your-nose/. Good luck!
put the salt in right amount. if it is too much your nose will burn and if it is less you can’t put the water in your nose. first warm the water not too much hot just you can put in your nose. Then add salt which is right for you. you have to little tilt the head one side. I am doing it this nati kriya from last fifty five years.minimum 250ml in one side.
Hi, I’m 34 years and I’ve been experiencing nasal congestion and crusting for 8months. I often blow out hard mucus substance from my nose with difficulty. Please I need help on how to treat myself. Thanks
We are sorry to hear about the issues you are facing. We encourage you to download the article mentioned in the blog. Follow those steps in irrigating our nose daily and this may help you.
hi, i’m 23 yrs old. I’ve been experiencing a lot of mocus sicreation in a day. I am diagnosed with chronic sinusitis, and atrophic rhinitis. Please help me on how to treat myself. Thank you.
Hello. ARe you affected by an ectodermal dysplasia that is causing your sinus issues? We always recommend that you talk with your doctor for how to best treat your personal symptoms. We offered the tips in this article for anyone with nasal crusting who has ectodermal dysplasia. ~ Jodi, NFED, Director, Marketing and Communications
I am sorry to hear that. You can try drinking ginger water. It is known to help get rid of mucus. Hope that helps.
Hi, when I sneeze the smell of the moisture that comes out smells really bad. What it the best way to eliminate this issue? Thanks.
Hi, Edward. Irrigating your nose on a regular basis may help. The article outlines how to do that. We would encourage you to consult your physician and ask. – Jodi, NFED, Director, Marketing and Communications
Thank you Jodi. I did a neti pot rinse yesterday. I mixed sea salt, baking soda and Xylitol in some warm distilled water. My nose felt much better and I didn’t wake up with a stuffy nose. Felt clear this morning. Thanks
Glad you got some relief! Jodi
Thank you Jodi. 🙂
I’m 39 yr out have blk crust in n around my nasal passage in both nostil how do I stop it from crusting again
Hi, Nina. We would encourage you to talk to your doctor about what you are experiencing. ~ Jodi, NFED, Director, Marketing and Communications
Hi I have suffered with sinus issues since 2005 have had a couple infections along the way, about 6 yrs ago I had to go to emergency room my nose was so dry it felt sharp spikes in my nose, have to 3 or 4 Ents all of them were absolutely worthless, just a couple days ago I had my 4th or 5th sinus ct scan there was some mucosanal thickening in ethmoid sinus as well as thickening in some other sinuses but the one thing I have noticed again was a septal spur which I read can cause dryness is that true, because I realized recently that NY sinus issues started around the time I got hit in face with basketball, I did not break anything but I read spurs are usually caused by trauma. I have tried everything nothing works salt rinsed increases dryness and even when something works it comes back within a few hrs, one last thing I also have sleep apnea can that contribute to dryness. Thank You sorry for such along question but it has been a complete nightmare the last 15 yrs.
Hi, Philip. Are you affected by ectodermal dysplasia? Our organization and this article was intended for people born with this condition. Unfortunately, we are not able to answer your question as we don’t know the answer. We would encourage you to keep searching for a physician who can provide you answers. Sorry to hear about all of our issues and we hope you find relief and treatment. ~ Jodi, NFED, Director, Marketing and Communications
Amazing post with lots of useful information.
Thanks for posting.
You are welcome.
Within the past couple of months I was suffering from nasal crustiness inside and around top of nostrils. This occurred after experiencing dried bloody build up upon waking in the morning. I mentioned it to my dermatologist at my semi annual visit. She recommended twice a day application of mupirocin ointment 2 times day for 7-10 days. Crustiness stopped after 1st application of mupirocin
Glad you found something that worked for you, Paul. ~ Jodi, NFED, Director, Marketing and Communications
Hi Paul,
Thank you for providing this solution to the community. Could you kindly tell me how you apply mupirocin ointment in your nostrils? As a thickened ointment, how do you liquefy it for entering into your sinus cavities? Thank you.
Hey this is adrain Lozano I just found out I think my nose is swollen and it when I touch my nose inside it feels hard and sharp like if does not feel soft and u know what I mean by my right side and left side of my nose between my 👃 but worse part of it is I can’t sleep very well it’s also making me feel anxious so but I am going get a docters test around Tuesday but more like this week wensday sometime like that it sucks I gotta wait and it feels like I’m going to lilltery lose my breathing and just collapse or even die but I’m not going to beause I am still breathing but it’s just harder to breath but all I can do is calm down and feel realx till I get this thing gone so what kind of things should I do so I can get my nose feeling again better and I heard it’s mucas that’s causing it. I also when I touch it it feels hard like a rock and I took medince for it I thought at first it was my breathing but no it wasn’t it was my nose making my breathing case if me breath barley and making feel anxiety so I pray god to help me and it seems to work but I gotta find a way to get this hard Muscat’s out of me or whatver it is like NASAL IRRIGATION also it is under the skin I think I’m not sure what to do so like when I touch it feels like hard and yeah but what can help me so I can get this done asp beause I’m worried it’s going get worser I’m also 18 and I just want this to be quicker if not then I’m going have struggling breathing. Please help
Hi, Adrain. I’m so sorry to hear about your difficulties. It sounds like you are doing the right thing by seeing a doctor. He/she will be able to assess your situation and create a treatment plan for you to get some relief. Good luck! Jodi, NFED, Director, Marketing and Communications
For dry nose, I got a glass jar from the natural food store, 3 inches high. Put distilled water half full. Then l put glycerin in, drissled it in. Shake it and use a q-tip and swab each nostril. I do this twice a day, and it works right away and wonderfully.
Glad you have found something that works for you.
Here we get to know about nasal irrigation prevent and treat crusting information in detail. It helps us to decide that which one is best among its types. I enjoyed reading this article and would suggest others it as well. Thank you for this article! This is really very informative for us.
I just had surgery in my nose. Can’t remember what he called it, I hsvec3 spacers in my nose and it hurts if I touch them. Do you recommend a nebuluzer to remove crusty stuff . Also why does my nose continue to be totally plugged up. I have to wear something under my nose for drainage. How long will
This last? Thank you
Thank you for keeping this exchange going. There are a couple of contributions that may help me with my nose crustiness. I have been to an ENT, he did scans and looked up my nose and said I don’t have it have anything. Sent me to an allergist the allergist found no allergies. But every night, my nose slowly gets blocked, and sometimes I have to get up and clean it out so I will be able to breathe. I guess this is the nose crustiness everyone is talking about. Some kind of mucus is coming from up above. And still they say I have no infection, but they have refused to actually take a sample and get it checked. And there is blood, so there is the chance of infection with all my messing around up there. My nose is a little swollen and a little sore, so it has me worried.
Hi, Patricia. Are you affected by ectodermal dysplasia? This post was written to specifically address nasal issues for people born with that disorder. ~ Jodi, NFED, Director, Marketing and Communications
I know. But it has turned into something else, and it has turned out to be extremely useful, so thank you. The ENT and allergist I saw were useless.
So glad that you found the information useful, Patricia! Hope you are able to get relief from your symptoms. ~ Jodi, NFED, Director, Marketing and Communications
Is it common to get one of these after a sinus infection? It was yellow in tint but a bit more solid.
Hi, AB. Do you have ectodermal dysplasia? This article addresses the blockages that occur in that syndrome rather than due to sinus infection. Consider addressing your question to your doc or ENT to be sure. ~ Jodi, NFED, Director, Marketing and Communications
After several years of dealing with mucus as hard as rock in my nose I bought an inexpensive nasal sprayer. I use it at least every hour. I spray room temperature water into my nostrils blow my nose & spray again. This has worked well for me. The bad odor is gone & I sleep better. I also bought one of those nose hair cutters. That helps too. I am an 88 year old female. Sheila
For months I have a white rubbery substance attached & growing inside both my nostrils. I started trying to pick it loose. Some pieces would break partially loose & I pulled them out. Inside stays coated & raw. My incompetent Dr says it’s connective tissue, not to pick at it, but coat with petroleum jelly. Now horrible, some pieces green, it’s red & raw under the gluelike mucus. I have to pull some of this out! I live in an isolated area, not many health providers. Have appoint. With ENT specialist, but not for 4 more weeks. So sick, painful, & afraid.
Hi Sheila! I’m dealing with the same problem also. I have it for such a long time, went to the doctor for a couple of times but no help. I feel so embarrassed when I’m around with my friends and see them covering their nose, my social life is also affected with this thing. Can you please tell me what kind of spray you are using and you mentioned that you also spray your nose with water? Is it just a plain water or you put something in it?
We’re sorry to learn that you are experiencing the nasal rocks and odor. You might try the nasal irrigations shared in this blog and the article referenced. Also, check out the webinar on Ear, Nose and Throat Concerns. https://nfed.org/learn/library/?library_resource_topic_filter%5B%5D=550. You may need to see an ear, nose and throat specialist. Please contact me with any questions. Kelley Atchison, NFED Director, Family and Community Programs, kelley@nfed.org
So firstly I do not have ectodermal dysplasia…however I do have atrophic rhinisitus. The foul smell has left me alone, I no longer want to be around people. The look as well where my nose is swollen has caused me such anxiety.
Can anyone please direct me to some good advice from others who suffer with the same?
Hi, Roxie. Thanks for clarifying that you are affected. We’ve had a lot of comments on the blog from individuals who are not affected so wanted to be sure. I’m so sorry to hear of the challenges you are facing. We do hear from other families about the foul smell so understand what you are saying. I know many of them do regular irrigations to help clear our their nasal passages to help with the concretions which are often the cause of the foul smell. We do have several private Facebook groups where our families talk about issues like these. If you go to the group, there is a Popular Topic section and you can search for nose issues to find any past conversation threads on the topic. You can find links to them here: https://nfed.org/get-involved/connect-our-community/. There’s also a form on that page you can ask for a family list of people with your syndrome or state if that’s help for you. We also have a webinar you might want to watch for tips on how to handle: https://nfed.org/learn/library/webinar-ear-nose-throat-issues-ectodermal-dysplasias/. Feel free to give our office a call at 618-566-2020 and ask for Kelley. She may be able to connect you with someone else who experiences this problem. We are here to help and provide support as best we can. We hope you find solutions. ~ Jodi, NFED, Director, Marketing and Communications
I too suffer from foul smell in my nose. Others can smell it from many feet away. Question, do you eat lots of carbs and sugar? I think this Maoist worse but it seems that I crave carbs and sugar all the time.
I’m 38, In the last couple of years it seems whenever the weather changes drastically I get nasal drip into my throat meaning I’m constantly trying to clear my throat but this time I am also waking up with a thin layer of mucus in both nostrils which I manually clear, I don’t understand the sudden change
Hi, Emma. What type of ectodermal dysplasia affects you? Have you mentioned this to your physician? ~ Jodi, NFED, Director, Marketing and Communications
i use colloidal silver to kill the infection that seems to cause scabs inside my sinuses. When i blow my nose a big gooey scab comes out. and it stinks like a metal odor.
I use a cpap because I do snore terribly and it helps greatly. My nasal passages though are blocked every day and evening and the only thing I can seem to find that will open them up is Oxymetazoline Hydrochloride and i have to use it at least once every evening before I put my cpap mask on so I can breath. I’ve tried everything else and wanted to see if you may know of something different. I’ve tried the neti pod, Flonaze Triamcinolone Acetonide etc. I’m at at dead end and my nose has got to where it bleeds too. Thank you Bee
Thank you for sharing your routine with us, Bruce. You might download Dr. Hopkins’ article, to read more about what he suggests you do for treatment. Good luck! ~Kelley, Director, Family and Community Programs
I am trying to get off that nose spray which I use all day long for 20 years. I have started to dilute with saline solution to wean off as stopping cold turkey isn’t possible.
My daughter is 6 an I have to clean her poor little nose out every night an morning if I skip a day her nose is almost completely closed up. Her boogers will be reall hard an big. I can grab her nose with my fingers an can’t even squeeze it because it’s so hard. Please send me info!
Hi, Aaron. If you download Dr. Hopkins’ article, you can read more about what he suggests you do for treatment. Best wishes! ~Kelley, Director, Family and Community Programs
After having what felt like a constant drip of clear mucus in my throat causing me to be constantly clearing it I spoke to my Doctor over the phone due to Covid restrictions on GP visits. He suggested I use a nasal spray (Memetasone) which I began to use and it seemed to have an immediate effect in relieving my symptoms. However after using for 3 weeks I started to notice dry blood in both nostrils when I blew my nose. I stoped using the nasal spray at this point which is about 7 days ago now and whilst my symptoms returned they are not as bad as they were but the blood remains to be there when I blow my nose on occasions. I am hoping to have another chat with my Doctor but I thought I’d ask if you had any thoughts/advise on my experience. Many thanks, Peter
Hi, Peter. Please share your question with me at kelley@nfed.org. I will gladly see what information might benefit you. Always, continue to speak with your personal doctors.
I’m a 50 year old female who has had nsasl crusting for the last 3 years. The last year I have been treated for it, with anti biotics, muprocin rinses, and then antibiotic eye drop nasal rinses. Muprocin worked the best, but the crusting would come back if I stopped using it. Got a new Ent and he is trying really hard to figure out whats causing it. Just got out of the hospital due to nasty sinus infection, that he operated on and took a biopsy of my nose.
The biopsy showed accute and chronic inflamation… will see ent in 2 days and keep posted if he has any answers… it seems to be a rare thing that not a lot of ents know about…
I went to an ear,throat and nose expert with a terrible smell in my right nostril and he said I had a crust so he pulled it out and said that what you are smelling and he said to use flonaise once a day and a cream rub it in your nose every night. it has been at least 2 weeks and some time the smell comes back so how long am I going to have this. I do have some sinus problems also
Karen, nasal rocks are a common symptom for some of the ectodermal dysplasias. Please contact Kelley at kelley@nfed.org, she can guide you to additional information.
I need help please. Not even sure this is the right place. When I was in high school I had bloody noses as a result of me picking my nose and scratching nose with fingernail. Due to embarrassment, I lied to my father and said the nosebleeds were spontaneous. I then had a nasal cauterization on the right septum. Great nosebleeds stop but the cauterization removed all hair follicles and ever since boogers form and stick very firmly to the septum. I feel like I can’t breathe when they are present. Ideally, a hot shower and some nose blowing will loosen the adherence but some times not. I’m then left to struggle and try to pick, dislodge by friction or repeated attempts to dislodge this very tenacious booger on a daily basis. Is there something I can do to make this easier or prevent it from happening? Thank you.
We recommend that you speak to your physician or Ears, Nose, Throat doctor for advice. We do not have information to guide you for this particular concern.
The insides of my nose and sinuses get so sore . Saline washes don’t help , and often seem to make things worse . I don’t have any obvious infection in the mucus , which is clear , but can often be thick and stringy , and seems to build up in the sinuses . My eyes can be affected , as the inflammation effects the nerves around my right eye particularly , and my vision often becomes blurred , and there is often a resulting headache . Is it safe to use some sort of lubricant inside the nose ? I have read that some people have successfully used one of the following : Vaseline , Aloe Vera , Glycerin , and pure organic Sesame Oil .
You can certainly follow the information linked from this article. We also encourage you to speak to your physician or Ears, Nose, Throat doctor for advice. We hope you find relief soon.
Sounds more like allergies causing your issues tbh
Hi Graham
I have similar symptoms. Have you found something that works?
In October 2019 I got very sick with MRSA in the nose and throat. I went from being 180lbs to 110lbs in 3-4 months because I wasn’t able to swallow food or water since I hurt so much. The doctors kept giving me antibiotics for months upon months and the ENT doctor kept having my use a neti pot to flush out my nose. From the MRSA eating away at my nose and throat I would flush out chunks of dead skins or also cough some up. But awhile a year of me not getting better I finally gave up and stopped going to the doctors and for the past 5 months I haven’t been able to inhale or exhale through my nose and I can’t smell anything. Do any of you have further knowledge or have been through something similar could that you could tell me what to do?
I have also tried using the sinus rinse recently and every once in awhile but my nose is so plugged I can’t even get any water up there. It’s like I’m covering the hole up to the bottle and squirting. That’s how plugged my nose is.
When i am taking the deep breath my left eye gets small pain. its for years . What could be the reason. kindly advice
Hello, Rajesh. We do not know what could cause this pain in your eye. If you haven’t already, we recommend that you speak with your doctor. We hope you are able to find answers and relief soon!
Hello I’m Rick , I’m 49 and was diagnosed with a brain Tumor in 2018 , after 2 crainiotomys they tried endoscopic surgery thru my Nose , since I no longer have a septum “After doctor said I’d breathe better than ever “.
I use a navage 2-3 times a day getting Rocks daily. Waking up in the am is the worst Breathing does not exist .
Along with the Navage I use a humidifier Daily and while sleeping seems to do nothing , could be the giant void in my nose 🤷♂️.
I also irrigate with baby shampoo mixed in navage seems to help and Vaseline inside every couple days , I still to this day get can’t clear my nose , I actually cut a straw down to insert in my nostril to breath ..Now if that help why can a surgeon insert something the help …Kinda sick of being disabled as it is and not being able to breathe because of a idiot Ent
Hello, Rick. We don’t have information to guide you. We encourage you to speak with your primary care doctor for guidance and a recommendation for an ENT that can provide a second opinion.
Sincerely,
Kelley Atchison
Director, Family and Community Programs
I can’t seem to find an answer anywhere I’m hoping maybe you could help. I have a perforated septum, is nasal irrigation, netipots etc safe for me? It’s a pretty big hole 1cm maybe bigger. I try googling it and all I can find is deviated septum’s and it says it’s safe but that’s not the same as a perforation. Are these things safe to use?
Hello, Larissa. We recommend that you speak to your doctor or ENT for recommended care. We don’t have information to assist you.
Kelley Atchison
NFED, Director, Family and Community Programs
My nose has been blocked for 6 years now but I have noticed recently within the last year when I cut grass my sinuses are completely clear and I can breathe through my nose for the rest of the day after that it goes right back to be blocked
Thank you for reading our blog Darrail. We encourage you to consultation with your PCP or an ENT.
I found relief from a very bad chronic sinus build up that ultimately passed after 3-4x a day of: sinus rinse/Neti pot, afrin, warm compress and message, aggressive nose blowing. A booger the size of my pinky finger came out of each side. Have been good for a couple years since.
Hi, I have had a SCC of the nose and have had three FESS surgeries to remove the tumour plus radiation. I now suffer from chronic post nasal drip and crusting. I use neilmed rinse to remove the crusing but nothing stops the post nasal drip – have tried all the usuals ie steroids, baby shampoo in the nasal rinse and am wondering if you have any advice?
Liz, we hope you have found the information to be helpful. We do not have advice for continuous nasal drip. Hopefully, your doctors can provide treatment advice and you find relief soon.
The mucus in my 89 year old nose was as hard as concrete for about 10 years. I tried many things without success. Finally I used a q-tip to paint the inside of my nose with a thin coat bacitracin. It worked. I had almost forgotten how to live with a trouble free nose. I am no longer a mouth breather, I’m a nose breather again.
No more concrete.
This is so gross, but I have been getting gigantic boogers in between nostrils…I think its my nasal cavity but I’m not sure. There are times where I can put my finger in one nostril, and feel the boog and then blow hard, and it will come out on the other side. I am super concerned that this is a huge hole, and worried if it needs medical attention or a procedure.
Hi, Sarah. Thank you for sending your comment to Kelley, we will reply to your email. Thank you.
Great piece of writing with immensely informative contents! I really liked the writing style and the whole process of the story building. Waiting for more posts! Cheers!!
Do not use saline if your nose is dry. Saline makes your nose even more dry. It washes away the mucus from your nose and leaves your mucosa exposed without any protection, there’s only a thin layer of saline that evaporates in no time, leaving your mucosa dry as hell, and then crusting gets even worse.
I recommend drinking loads of water, buying an endoscope and removing crusts with tweezers. It’s the only way…
Hi, Pavel. Thanks for sharing your experience and what has worked for you. This article was written specifically for individuals affected by ectodermal dysplasias, many of whom do not produce mucous as a symptom of their diagnosis. Therefore, saline rinses are the best option for many of our members.
Dental infections / bone infections seem to be common for both my son and myself. Treatments that have festered do go into your sinus cavities. If your mouth also feels metallic, sensitive tongue, gums etc.. breath odor this does show a sign that it can definitely be the root cause. I find humidifiers keeping the air in the home damp helps. I also clean my nose in the morning and at night with a fine tipped cutip with Castor oil to keep it from cracking/drying – and blowing throughout the day. (I know my son will snort especially when in school or too lazy to blow) I also noticed if dairy makes it worse. Allergy testing to make sure that you are not making a current problem worse… our ectodermal structure is highly sensitive, our tissue linings in our body are affected, this would include all ectodermal structures. From what I have been through in 57 years with neuropathy, muscle and bone.
pain, dental problems etc….we have preventative care. It would be interesting to see how many of the “aged” ectodermal patients over 50 have pain problems. Women who have ectodermal dysplasia – Menopause? Hormones?That was an experience in itself……My personal opinion start treating the cause as a systemic issue. Treat the whole body….it all starts in the cell.
Sonia, thanks for sharing your experience and what has worked for you! We definitely rely on our community to help support each other, through their understanding and experiences.
I am a 57 year old female, who has had ear infections and strep throat, all through my childhood! I still battle stopped up ears ace nose! I have been diagnosed with deviated septum, but I have factor 5 blood clot disorder, most Drs will not do surgery on it! I don’t really want it done!! I have recently been diagnosed with breast cancer early stage, & need surgery! I have taken mucinexD, and regular for like 6 weeks, nose spray too, trying to dry it up for surgery!! It’s not working!! Any suggestions to what will dry it up a bit?! Is it dangerous to have surgery with a discharge town my throat from my sinus? Thanks
Hi, Karen! Thanks for reaching out to us. Because our organization focuses specifically on individuals affected by ectodermal dysplasias, our articles and resources don’t always apply to everyone, but it sure is great if they can help others out.
Having said that, many individuals affected by ectodermal dysplasias don’t produce mucous like those who are unaffected. Therefore, we don’t have resources about how to dry out your sinuses, because our community typically already is very dry. My best advice would be to ask your doctor the best and safest ways to help you. Additionally, we just don’t have the expertise to comment on the safety of your surgery. We do wish you the best and hope that you are able to safely undergo surgery to treat your cancer.
Take Care,
Veronica
I have nasal polyps and asthma- 3 surgeries later, I still have polyps. my asthma is not under control, only with meds. I sometimes take rounds of prednisone to shrink the polyps. Also, On a regime of saline mix with a corticolsteriod (pulmicort)that i rinse my nose with..I have used sovereign silver spray, xylitol spray, cortinsone sprays..mms, so many teas, oils, suppliments and organic and herbal, homepathic and still frustrated and labourded breathing for years. The new thing is what is coming out of my nose. I have a while rubbery and hard substance that i can take apart. It has a skin the envelopes it and i can remove the skin..it is strecthy in parts and part in parts…Are these worms? what the heck is this?CAn you help with determine what these bits are??? thanks
Hi, Ida! Unfortunately, while we do share information from medical providers and scientists, our staff is not made up of doctors and are not qualified to answer your questions. This is something that I would definitely recommend seeing your primary care physician or ENT about. If you have an ectodermal dysplasia diagnosis, sometimes our community members have similar experiences. Let me know if you are affected by ectodermal dysplasias, and I can connect you to some of our Facebook communities that might have more recommendations. But our first recommendation is always to ask your doctor. Best of luck!
I’ve had 3 sinus surgeries in my life. Last one around 8 years ago with a rhinoplasty and a major turbinate reduction. My sinuses are great now. Only problem is major crusting. The kind that won’t “blow” out. Many times if you “sniff” hard I’ll have some shoot down my throat and I’m sure at this point it’s causing me to have reoccurring bacterial pneumonia. I do believe I have some that’s never come out and it’s causing huge problems with my lungs.
The neti pot has been the best treatment for me.
I recently got a rhinoplasty, and I’ve been getting these “big boogers”. I’m not sure what it is, and I’m extremely scared. They come from both nostrils, and when they do it becomes extremely hard to breathe, and i start to smell really bad odors as well. Is this a side effect from the rhinoplasty? I’ve never gotten this before.
Hi, Alex: I’m sorry to hear you are having these issues. Unfortunately, we are not medical experts so can’t confirm whether or not your concerns are related to your surgeries. We highly recommend following up with your surgeon or other medical professional.
Best,
Veronica
Doctors took x ray of my forehead and said I have severe sinunitis, they said it looks like a plate. For 20 years, I have this. It has never gone away, is it something else.
Hi, Chaz. Because we are not medical professionals, we cannot comment on what is happening in your particular case and recommend taking the advice of your doctor or seeking a second opinion if you have concerns. There are many things that affect the sinuses, and the information/advice included in this article were developed specifically for individuals who have an ectodermal dysplasia diagnosis. Best of luck to you!
-Veronica
This has been hell. For over a year, I have been removing extremely large, dark, hard mucus “plugs” (I call them that because they completely block my airway) almost entirely on one side. The past 2 weeks have seen a huge increase in these problems. It feels too far up, too dry and hard, and too large to move. No amount of blowing, rinsing, or agitating is moving anything large enough out to make a difference. I already have as bad of anxiety as you can get and do not have medication for it. And the sensation of not being able to breathe and feeling the blockage constantly is compounding my anxiety. Im constantly jumping straight up out of bed and pacing back and forth in my room considering going BACK to the ER for this because it’s making me panic so bad. I can’t get it to move. The urgent care dr refuses to believe it’s anything other than a cold…for over a year… yeah I think NOT. I’m scared, I know I’m probably causing more damage trying to fix it myself. I’ve reached out for help and basically got an answer that said “I don’t feel like dealing with this” from professionals. I’m losing my mind and I cannot handle the amount of anxiety this is causing me. Please, if anyone knows what I’m talking about and have managed to get a plug out after weeks of struggling to breathe, PLEASE let me know. I just want to relax and breathe.
Hello! I wasn’t sure if this was something that could help me. I have a rough texture on the inside of my nose (both nostrils) right where a septum piercing would be. It’s very rough and almost feels like I have plastic sticking out of the walls of my nose. I haven’t found anybody able to tell me what it is or how to get rid of it. I have a cold at the moment and the rough texture is very irritating. Can anyone help?
Hi, Taylor. What your describing sounds very irritating. Unfortunately, we are not medical experts and truly only provide information specifically for individuals affected by ectodermal dysplasias, so we are not qualified to comment on what you are experiencing. If your primary care physician can’t help, perhaps you could see an Ear, Nose and Throat Specialist to determine what is going on?
Best of Luck,
Veronica
My daughter 25yrs is getting those nasty concretion and crusting in nose which makes her breathing difficult and uneasyness.
When she does Neti (Nasal Cleaning) with only saline water, she gets relief and every 2-3 days lot of, thick blackish mucous or crust comes out, giving relief.
My question is –
Why this crusting takes place and is it an indication of underlying problem.?
Will it continue lifetime ?
Is steroids treatment necessary? Which helps by reducing the inflammation and opening the nostril.
Hi, Rahghu: This is a good question. You really should see a doctor for an official reason and/or diagnosis for your daughter’s issues. This site and blog were developed specifically for patients affected by ectodermal dysplasias, who have these issues because they do not produce mucous like those who are not affected. We wish you luck on finding a reason for the issue and glad that the saline rinses do help her!
My 3 year old gets so upset to the point of hyperventilating when we come near her nose to do anything. COVID test have traumatized her. Her nose crusts often especially when she is congested and she won’tt blow her nose. Doctor said her Eustachian tubes are inflamed and gave me flonaise. You suggested no holding her, which I don’t like to do anyway but I don’t know how else to get it out. She is having a hard time breathing. We put her in the tub, use humidifiers in the house, try to suction but with no luck. Help me, I am really concerned.
Hi, Jennea! I’m so sorry to hear your little one is having such problems with nasal crusting and the fear of having something in her nose. Unfortunately, without directly using a saline rinse and/or bulb syringe to remove the congestion, it may be hard to get everything out. Another tip we provide to patients with ectodermal dysplasias, is application of a sterile lubricating ointment such as DuraTears, Lacrilube, or Vaseline to the inside of the nostril. The ointment should be applied liberally just inside the nostril with a fingertip several times daily. This may be less invasive for her than a bulb syringe or flush bottle, but I understand she still may not tolerate it. If nothing else helps, I highly recommend speaking more to your doctor and possibly consulting an Ear, Nose and Throat specialist for assistance. Best of luck to you! – Veronica
I have been dealing with a foul smell coming from my right nose so I tried to look into it and I saw stones inside the deep part of my nose. I used a light up ear cleaner that is brand new and unused to check the inside of my nose and tried to use it to pull out the stones but they won’t budge and it really hurt like hell. Now I am having severe headache and nausea but I am not sure if those stones caused it. I also have otitis media so I am not sure if it is safe to do a nasal irrigation. Please help, I need your advice if you have a similar experience. I am desperate to remove the stones and the foul smell from my right nose. Thank you so much.
Hi, Lily! I’m sorry to hear that you are having such troubles. Unfortunately, we are not medical providers and therefore are not qualified to provide information on the safety of nasal irrigation with co-occurring otitis media. We highly recommended seeking advice from a medical professional and possibly seeking a referral to an ear, nose and throat specialist. Best of luck to you! – Veronica
I have severe sore throat and palate after nasopharynx surgery inflammation pressing on petrosal nerve. Constant pain will it stop?
Hi, Lauren: I am sorry to hear about your constant pain. Unfortunately, we are not medical professionals and cannot answer your question. I would highly recommend reaching out to the provider who did your surgery to inquire about the pain and how to manage it. Hoping you feel better soon! – Veronica
I’ve had some crusting in my nostril and when I removed it, it was rather bloody but I had no nosebleed. I’ve been having bloody boogers also at times but I don’t understand what’s the mechanics of these things. I’ve been congested recently and do have slight pressure from time to time but blood?!
Thanks for your comment, Greg. If you are having concerns about mucous and blood in your nostrils, I would definitely check in with your doctor. Best of luck! – Veronica
Hello, I don’t know if my comment will get recognised.
For a good few months, possibly longer maybe around 2 years I’m having what I can only described as big scab like bogies in my nose. I wake up and they are there almost restricting my breathing. I’m having to clean my nose several times a day to clear it with cotton buds to get rid of them.
I don’t know what this could be.
However I do suffer with idiopathic intracranial hypertension and I don’t know if it could be related?
Hi, Jordan – I’m sorry to hear that you are experiencing this. Perhaps nasal irrigation will help? Unfortunately, we are not medical experts and our information is provided specifically for those affected by ectodermal dysplasias, so we cannot comment on whether or not this could be related to they hypertension. We recommend seeking the advice of a doctor and possibly seeing an ear, nose and throat specialist. Best of luck! – Veronica
Hi I have been fighting a nose infection for roughly 1.5 months now that blocked my nasal cavity I was able to use steam therapy to get it dislodged and removed a fairly big chunk of blockage but now am dealing with scabbing that causes alot of discomfort n pain and cronic head aches I have been using poly sporin to help fight the infection and took some anti biotic but still no luck its definitely improving but I can’t seem to get over the hump of scabbing n crusting every 2hrs I have to use a wet qtip to try n moisturizer my nasal cavity and applying poly sporin every 4hrs but nothing seems to change is it possible that I may need a different medication that will help? It’s been a very long n stressful fight thats pretty much left me laying in bed 24/7 cause of constant head aches witch iam assuming is from the injection or scabbing do you have aby suggestions unfortunately my family doctor is very hard to reach and will be a 2 week wait before my appointment and the hospitals in Muskoka are pretty useless they just refer u back to ur family doctor and dismissed as just dry nose
Hi, Dwight! I’m so sorry to hear this – it sounds very painful and unpleasant. Unfortunately, while our library articles and blogs offer expert advice for individuals affected by ectodermal dysplasias, I and our staff are not medical experts and can’t really make any recommendations and/or guess at what might be occurring. We really encourage you to reach out to your physician for follow-up. Best of luck! – Veronica
Thank you for being a voice of positivity and inspiration in a sometimes negative world.
I’ve had bad smell in left nostril only. Also mucus in throat on and off for a year or so. Dr says it’s chronic sinus infection, finally found a Dr that said she’d prefer me to ENT. I do have the yellow crusting also, I’m a bit concerned that antibiotics help but it comes right back. It’s definitely interfering with my everyday life! What could this be?
Brian, if you are affected by an ectodermal dysplasia, we encourage you to share this blog and related articles with your provider and that they are able to provide you with relief. ~Kelley
I wanted to mention that probiotics may help some of those suffering from sinus issues and dental/oral/perforated sinus healing delays. A humidifier (I use the steam one, when my sinuses act stupid) may also help keep things from drying out. Of course, adequate hydration, i.e., use that $50 Aladdin mug for H2O, often. (It doesn’t work if the mug is used for Diet Dr. Pepper or vodka, unfortunately.) Another tip is to use distilled water rather than tap when mixing the sinus rinse solution, especially if the tap water is on the hard side. I have resorted to using a little bit of Vaseline or mineral oil on cotton swab, repeatedly applying one, or both, to penetrate the dry crud for several hours before attempting to flush with the saline solution. I also have better results when I flush after a long shower.
P.S. For those of you who have suffered, or are suffering, from perforated sinus or maxillofacial bone loss resulting from dental infections, failed endodontic (root canal, apioectomy) procedures, complications after dental implant treatment, etc., find a specialist who will discuss more aggressive treatment options to eradicate any underlying infections. It’s possible that oral antibiotics alone will never cure infections that are encapsulated or otherwise resistant to traditional treatment because of lacking blood supply and such.
Your health is up to you, and the doctors work for you, so don’t give up and don’t stop searching for help. Good luck and I hope you all get all the boogies out and can breathe free and fresh.