Empty Nose Syndrome

November 15-December 10, 2007

 

I scoured the Internet, for information and reassurance.  Eventually, I turned up this site: http://www.emptynosesyndrome.org/ and discovered dozens of others suffering painful symptoms, just as I was, as the result of sinus surgeries involving turbinate reductions. Loss of turbinate structure can result in a condition called Empty Nose Syndrome or ENS. The condition is described on this site: http://en.wikipedia.org/wiki/Empty_nose_syndrome. Even as I read about the importance of turbinates—they are nasal structures that filter and humidify the air we breathe, and create the resistance that provides the sensation of breathing–I didn’t realize that turbinates are bony structures.

 

On December 5, at my last appointment with Dr. S, I picked up my patient records. That evening, I peered through them, with one hand covering my eyes. Among the upsetting things I found was the CT scan report of 10-18: “No significant septal deviation is seen.” I had not had a deviated septum! The surgical pathology report notes a clinical history of deviated nasal septum and chronic sinusitis. I had never been treated for a sinus condition, or complained of one, in my life. I had seen Dr. S. for tinnitus. According to the surgical pathology report, this was removed from my sinuses: multiple pieces of flat bone and cartilage, in aggregate measuring 4.0 x 4.0 x 0.2 cm. (4.0 cm is larger than 1 ½ inch). Also some gray mucoid soft tissue measuring 2.0 x 2.0 x 0.6 cm. Multiple pieces of BONE were removed?!

 

I felt myself encased in a human cage, falling down into a black abyss. Bone was removed. Turbinates are made of bone. That was why people on the forum kept saying that turbinates could not grow back. My condition was a life sentence.

 

A few days later, I found the courage to read some more of the patient reports. On three follow-up visits after the surgery, Dr. S. had noted that I had atrophic rhinitis.


30 Responses to “Empty Nose Syndrome”

  1. I’m getting ready to get a CT scan but I’m definitely not going through with any surgeries. My ENT doctor said I may have a deviated septum but we have to see for sure with the CT scan. I did bring up the empty nose syndrome to him. He said that Drs should not be taking the turbinates out completely that nowadays they reduce them by carterizing them. I’m diffusing essential oils now and looking into supplements like bromelain. I just can’t trust the surgery thing. I would be so upset if they did something I didnt want. Plus the last time I got really sick I had a panic attack so I don’t need anymore stress.

  2. My nasal bone was shattered after a swing seat accident. Decades later I had a rhinoseptoplasty. For years I had a chronic cough. Then my septum collapsed from a severe sinus infection. Following surgery I felt clostrophobic & panicy. When the nurse came in to discharge me I resisted her taking the oxygen mask away. I was overcome with the feeling of suffication & I nearly fainted! Recently,, I was diagnosed with ENS & treated with kenalog IM,a cortizone,for inflamation. There is a paleness of the mucus membranes indictive of lack of blood circulation as well as focal pain & a feeling of emptiness etc. I take Vitamin B12 & B complex IM every month to keep up my immunity, stay hydrated ! For dryness, Ponaris nasal emollient (201)262-6363, Pretz nasal spray (800)457-4276. A netti pot is helpful for nasal lavage (800)822-4547 & ice chips or losanges for dry mouth. I feel for you all! native floridian

  3. Finally I don’t feel so all alone. My surgeon removed the mucous membranes in my frontal sinuses when he did a routine sinus surgery then threw me overnight in the infectious disease ward. Later that evening they rolled in my roommate who had MRSA, and I caught it in my sinuses. I suffer every day, severely dry nose, repeated infections, horrible headaches. It took me 12 years to get an ENT to pull the surgery notes and to be nhonest with me as to what went wrong.

  4. Weight loss is not something I have experienced. Does anyone else have that issue? I agree, doctors have not been able to help me very much either. Right now my nose inside is so dry and sore, it’s awful! And the post nasal drip is worse than ever. I probably should be on antibiotics. I will get the glycerine and I read lanolin is good too.

  5. I have similar encounters since last April. But the jerk (ENT Surgeon) claimed that he has done his job according to the correct procedures. What can we do ? sue him but I have spend monies to engage a lawyer upfront…tough luck!!!

    • Yeah, forget the lawsuit. Turbinate removal is not considered “negligence”, but routine surgical procedure to “fix” other problems. My ENT is treating me for chronic “atypical bacterial infection”…I am constantly on antibiotics, and they don’t really help the day to day issues of coughing, actually CHOKING, dry crusty nose on one side. I suppose the “atypical bacteria” is a result of having no filter where the inferior turbinate used to be…stuff gets up in there and hangs out in the gaping hole left by the surgery. This is a guess on my part. I like my ENT, he seems to understand the ENS concept, but he is poor at communicating. So the saga continues for me, too,

  6. “I had never been treated for a sinus condition, or complained of one, in my life. I had seen Dr. S. for tinnitus.” Sinus problems are a frequent cause of tinnitus though

  7. I had horrible symptoms (dryness, crusting, coughing, dripping) for the first couple of years. I am not saying they went away, it’s more like I am getting used to them! I live in a dry climate, which makes it worse. I am on holiday at the moment in a humid climate & there is a big difference, but my nose runs. Is there anything that gives you relief?

    • Donna, I am much better now. However, I still never leave the house without a bottle of saline spray fro my nose. I use a good humidifier during the heating season. Siccalix is good for nasal dryness.

  8. I had septoplasty (deviated septum) and turbinectomy (turbinate removal) on November 2001. The surgery in itself was more painful that I had imagined. Felt better as far as my sinuses and headaches for about two years, after that it has been down hill. I visited the ENT who did the surgery for a couple of years to remove the crust and he will always say that I was doing wonderful.

    I have crust in my nose, dryness in my nose and throat, always clearing my throat. I have used saline solutions, gel solutions, humidifier and nasal inhalation with a small unit that I carry around the house.

    Three years ago I visited an ENT who said, “I am not sure of ENS but you sure have a big empty hole” and then recommended that the only thing was to prescribe medication to ease the pain.

    At the same time, I also went to a naturophatic doctor, alternative medicine, who was more helpful with an anti-inflammatory diet, which helped; also acupuncture which also helped. I felt better for a while.

    Now its all back and I am in constant pain and discomfort, tired of being tired, exhausted is the word, very hard to sleep and rest. Doctors don’t validate the pain we are suffering after these procedures, they are ignoring what we feel.

    • To receive a response or comment, if any.

    • Absolutely, doctors ignore this problem because it is caused by other doctors, and all doctors stick together. Which leaves us…nowhere.

    • hi there just found this site,been suffering for a year now 3 times iv had to go to ae been diagnosed with sinusitis and tinnitus am at my wits end,saw you changed your diet,did it help? any help any one can give would be so gratefull thanks m

      • Hi Maria, I have now developed GERD (acid reflux?) from the constant drippings in the back of my throat. As far as diet, I was told not to eat or drink (water is OK) anything 4 hours before bedtime, I have to take an prescription antacid every day, and the doctor wants me to lift the head of my bed up 3 inches. If I don’t take the antacid and eat something late, I get heartburn now and my cough is worse than ever. I never had this problem before and I am sure it is from the turbinate removal. I FEEL the big hole in my face, stuff flops around up there and without neal med wash, it would stay there forever! Very frustrating!! Are you having constant sinus infections?

  9. I , too suffer from Empty Nose Syndrome. Refused to return to operating surgeon and have consulted with three others. Don’t know how much of turbines removed, suffer from dry mouth syndrome, pain in gums, have had a digital scan of gums/teeth, which was clear.. Have used Nasonex Atrovent, saline solution and gels in nose to no avail. Also shortness of breath, particularly in moist, windy conditions. Feel ENT’s do not rrecognise or accept ENS. FS on 20/6/12

    • I find it hard to believe ENT’s do not recognize ENS, but certainly they do not acknowledge it. For the most part. it is incredible to me that doctors always tell you to return to the doctor who caused the harm as professional allegiance trumps patient well-being, at every turn. Try to avoid products that contain the preservative benzelkonium chloride as it paralyzes nasal cilia.

  10. Donna, I have been given diverse opinions as to how much of my turbinates were removed. VERY diverse–ranging from 30% to all of the inferior turbinates. What OTC remedies have you been prescribed and how do you rate them?

    • Funny, my surgeon told me before the operation that he was removing my left inferior turbinate, a “structure”, he said, I “didn’t need”. Sounded like some tiny thing, “inferior”. Not only is it not tiny, I do kind of need it, but, its gone now…so, my other ENT recommends saline spray and also glycerine for inside the nose. No afrin or anything like that. Also he prescribed benzonatate (tessalon pearls) for my chronic cough. I also use neil meds nasal wash daily and sometimes he gives me antibiotic ointment to put in it.

      • Donna, it is good you have an ENT now who helps you. I had never heard of benzonatate. This information might be useful to other ENS sufferers. Thank you.

      • Unfortunately, I have just seen this site. I have suffered from ENS for 11 years now with all symptoms mentioned in your cases. However, I have not had the sufficient treatment. I only use saline water made muself and a few antibiotics. My night cough is worse and the drip associatted with halitosis and weight loss fm previously 64kgs to 45kgs now. I live in a dry 3rd world country where medicines are almost available especially in cases of ENS condition. I hate visiting ENT Doctors since then as I feel they do not know what they are doing just after making money and destroying peoples’ lives.

        What can I use to gain weight and reduce on infections? I used predenesole for many years and it destroyed my stomach.

        Thanks.

        Vasta 47 yrs old from Uganda.

  11. Is constant cough, sore throat, dry mouth due to empty nose syndrome because I been experiencing these symptoms since my sinus surgery and the doctor keep telling me everything is fine, but I know something is wrong.

    • Did your surgeon remove all of some of your nasal turbinates? I cough a lot, it is horrible. My surgeon is clueless or in denial or something, but I have an ENT who does get it and has prescribed and recommended over the counter remedies for my symptoms.

    • Your symptoms can be a related to Empty Nose Syndrome as nasal dryness can lead to sore throat, cough and dry mouth. There could be another cause. Only time will tell.

  12. What a bastard. They all bluster due it for the money. I am so upset as every where info they think I have HIV death sentence from these doctors.

    • I had a ct scan as I was having trouble breathing and it said deviated septum with concho bulbous and a bony growth. Also. I have numerous lumps and I dents in my head. Lost 3 inches in height osteoporosis. It is like speed aging.

  13. I saw my surgeon and he totally poo-pooed my complaints as not being related to the surgery! He said that since the inferior turbinate and tumor are gone, and I have a larger opening, I should be breathing easier and not be short of breath. He then referred me to National Jewish Respiratory Clinic. How about that?

  14. I had a turbinate removed because I had a benign tumor on my left sinus and it had grown around the turbinate and the surgeon wanted to get wide margins. He said he had to do that I that I don’t “need the turbinate”. Like no big wow, haha! Well that was in July and I can’t believe how lousy I feel all the time. short of breath, dry nose, constant cough, and when I rinse with saline on that side, the stuff that comes out is disgusting–including things from the environment, like black pieces of soot after sitting near a fire pit, and lint from a sweater. Am I ever going to get better? I see the surgeon tomorrow.

  15. I am much better now yes. I still suffer. In fact, after a period of great improvement, I am suffering extreme dryness again. I consider myself fortunate that my condition has gotten better overall rather than worse. Thank you for your comment.

  16. Hi,
    I was wondering if you found healing? Your story is amazing. So sorry

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