We invite you to browse this site to learn about ENS, to read shocking testimonials, and to learn how to cope with ENS. Don’t forget to browse the posts on our lively discussion forum, which has a section for questions about ENS, answered by Dr. Steven Houser, an Ear Nose and Throat doctor who specializes in ENS.
This is a small sample of video testimonials of ENS patients. (to see the rest of the videos, please visit www.youtube.com and search for Empty nose syndrome):
Part-1
Part-2
Part-1
Part-2
Patients' Descriptions
This is a partial collection of personal stories by people who have undergone some form of Inferior Turbinectomy, Middle Turbinectomy, or both, and as a direct consequence have developed ENS. These testimonies have been copied from three different internet discussion forums about ENS.
These testimonies document the serious and undeniable suffering that ENS causes, and show that all patients suffer from an identical array of symptoms in varying degrees. ENS is real, and it has impaired the well being and quality of life of ENS patients worldwide
Symptoms of ENS can range from a nuisance to severe.
The next examples have been published on “The Nose Board”:
Question re sleeping problems and ENS
Posted by John on 4/25/2004 , 4:04 am 84.64.51.232
How long after any surgery have you guys become aware of sleeping problems? I have become acutely aware of my inability to sleep properly three years post-op, but I think I have been suffering from the problem since then. I find it extremely difficult to sleep properly, I do not dream at all (I guess because the sleep is so light) and I am normally quite tired during the day.
Re: Question re sleeping problems and ENS
Posted by Shane on 4/29/2004 , 11:31 pm , in reply to "Question re sleeping problems and ENS" 68.185.42.211
John,
Quite Honestly, I noticed right after my surgery that my sleeping habits were different, I didn't have a deviated septum or any other type of altered breathing obstruction before the surgery ....my sleep wasn't even a problem before the surgery,.... I understand the problem of not dreaming, your body really nevers gets to REM(deep sleep) Instead of dreams I'd have nightmares! Your psyche gets messed over, it doesn't help that you feel fatigued all day and the cycle starts again day after day.....It's a catch 22, One thing that has helped me is Limu Plus by Vitacorp, it has helped my fatigue somewhat and I'd say a by product is somewhat improved sleep....
Just trying to help
GOD bless and take care,
Shane
Inferior Turbinates
Posted by Suffocating on 3/24/2004 , 2:08 pm 152.163.252.162
I had a deviated septum, from getting hit on my nose. It slowly got worse and worse, and 3 years later, I had to go see an ENT Doctor. He said that a septoplasty and a turbinectomy will help me. The dumb girl that I am, I went with it. Man, I should have done the research before I let that butcher chop all my Inferior Turbinates. Now I do Sirange 24/7. Its been 3 months since my surgery, does anyone know if my breathing is going to get worser? Am I doomed to using saline spray all my life, a humidifier in my room, and insomnia thats screwing the chemicals in my brain.
Re: Inferior Turbinates
Posted by VP on 3/24/2004 , 3:42 pm , in reply to "Inferior Turbinates" 64.12.116.71
hasn't changed for me -- almost 4 years now -- irrigation 2/47 -- humidifier, ambien to sleep -- I hope it does for you -- good luck.
Re: ENS PEOPLE PLEASE READ
Posted by me on 3/31/2004 , 6:48 pm , in reply to "ENS PEOPLE PLEASE READ" 172.198.2.113
Wait! What type of surgery are you getting? How old are you? What ever you do, do not let them cut up your turbinates. Shrinking them using radio-frequency reduction is so much more successful. If you let them cut up your turbinates with a laser, or manually, It could ruin your life. I use to be the way you are now, and I would do anything to go back. Imagine praying to get a terminal disease as your only hope, thats what has happened to me. And never get the turbinates removed, no matter what. Please! What ever you do consider radio-frequency reduction because I had this done and it helped. But the other surgery I had the doctor said he would trim my turbinates with a laser, but he messed them up. He destroyed my life. Please don't let them cut up your turbinates!!!! ENS is the wost kind of suffering
Social Security
Posted by Iza on 4/30/2004 , 1:54 pm 205.188.116.209
Can people with ENS get Social Security Benefits? Because with this problem, I know I won't be able to work full time. It's cause be depression, and I think this is a disablity. What do you guys think? If I apply, will I get benefits?
Dr. Houser
Posted by I on 5/5/2004 , 10:45 pm 172.196.168.170
Dr. Houser,
Hi I was wondering if you can help me. I had laser therapy a couple years ago on my turbinates, And ever since that surgery everything has gone wrong. My doctor said he was going to just "trim" my turbinates, but he reduced way too much of the front part of both turbinates. a couple months after the surgery, I started feeling symptoms.
I feel like I have no stream of air in my nasal passage. My nasal passage is just too open, this causes the secretions in my nose to become thick and dry. And the mucus doesn't drain because of this. I have to struggle when talk, because I don't have normal airflow. It is almost imossoble for me to even talk most of the time. Dr. Houser, I was wondering if you could help me by fixing my nose so that it could have a stream of air when I breath and talk. I think the problem is basically that my turbinates reduced to much, especially at the front part of the turbinates. Please help me! I can't live like this another day!
secretions in the nose
Posted by Anthony M on 3/29/2004 , 6:44 pm 172.198.120.49
I was wondering if anyone else feels like the mucus in the nasal passage dries and becomes thick. When to much air travels through my nose secretions(mucus) are unable to drain. This happens to me because My nose is too opened. I had a turbinate reduction twice. When I eat or drink dairy products it gets worse. I keep getting sinus infections towards the back of the nasal passage, but thats not even the real problem. The worst thing about it is that it causes me to have trouble talking. It makes my voice very quiet, it doesn't sound the way it should. It has caused my quality of life to go down more than I thought was possible. Its hard to explain what it feels like because its somthing that most poeple don't understand. Every ent(doctor) I see says my nose is fine, but its way worse than when my nose was obstructed with large turbinates. Does anyone else feel like this?
Dr. Houser please help!!!!! I have post turbinate surgery complications!!!!
Posted by SL on 4/15/2004 , 2:01 am 68.110.98.35
Hello,
I underwent sinus surgey 3 and a half years ago. I had my septum straightened, as well as turbinate reduction (middle and inferior) and yes, like the rest of you on this board, I am regretting it beyond beleif. My major problem, in addition to nasal dryness, is a horrible odor coming from my left nostril. It has persisted ever since my surgery. I have been to 3 different ents, and subsequently undergone 3 cat scans- which all allegedly showed nothing. Supposedly my turbinates were reduced submucuosly, and the outfracture technique was also employed. From what I have read, this is a symptom characteristic of ozena. What can I do? I irrigate w a waterpik device 1-3 times daily. Every time I irrigate, it seems to exacerbate the problem 100 fold. Upon irrigation my entire head seems filled with a horrible,chemical-like, caustic stench. Also, after I irrigate, the saline solution seems to pool in my left sinus. I have to tilt my head forward, and to the side for it to drain. What can I do? This condition has destroyed my social life. I have tried different antibiotics. Are there any that are effective against this? Please help!!!! I am literally hanging on by thread. I could use a bit of encouragement. Dr. Houser, thank you for your dedication to those of us with these nasal/sinus challenges.
Thank you,
turbinates!!!!
Posted by anonymous on 5/4/2004 , 4:36 pm 172.199.14.28
Is there any way too make your turbinates bigger? please tell me there is a way! Why doesn't anyone care or understand how much some poeple suffer. Are there any procedures that are done that could help turbinates go back to the way they were before surgery. Please give me any information you know.
Re: Questions for people that ENS
Posted by I on 7/9/2004 , 8:46 am , in reply to "Questions for people that ENS" 172.195.124.214
David, I had laser turbinate reduction. A couple months after the surgery I started noticing problems. It was devastating. I couldn't even talk right anymore. It felt unnatural and impossible to talk. This gave me so much anxiety, I'm suprised my body could live through it. It was hell. I would do anything to go back to the way I was before sugery. My entire body was affected by the surgery. I feel like I still havn't healed. I'm weaker now. My state of being has been completely ruined. I Also have trouble breathing, when I exersize, and when the winter startes. I can't breath through my nose or mouth.
Thak you for your time
Malpractice?
Posted by Iza on 6/23/2004 , 4:37 pm 149.174.164.74
Is removing 100% of the inferior turbinates medical malpractice? Can I sue?
I think in my case it was, the doctor had the option to remove minimal amounts of the turbinates, but he didn't even mention that or mention radiation to shrink them. My life is way worse than before. It's been 6 months since my surgery,and all I have is nothing but pain. Opinions needed. peace
Re: Malpractice?
Posted by Iza on 6/28/2004 , 10:21 am , in reply to "Re: Malpractice?" 205.188.116.198
I did the Operation, because my breathing was pretty bad, and the doctor diagnosed it as a deviated septum to the right. And turbinate hypertrophy in the left side. He didn't explain any side-effects what-so-ever, and I remember asking him this twice, and he said the only side effect is that you can breathe. He said he will do a septoplasty and turbinectomy to fix the problem. Ever since then my breathing is double worse, no drainage, headaches, constant feeling that I'm suffocating. It's terrible. Before my nose used to function, but now it doesn't.
I can't take it anymore!!!
Posted by Flushface on 7/10/2004 , 4:35 am 64.12.116.209
this irrigating is driving me INSANE!!!! I'm gonna kill that bastard!!!
I'm worse than before the damn surgery!!
At 20 months my hopes for further improvement are evaporating quickly
My poor dry nose does'nt work anymore
maybe I'll just Kill myself!!!
Why don't ENTs try and restore a physiologically natural nose instead of ectomizing and resecting without consideration for the results!!
MY life is a living hell!!!
minor outpatient surgery with a short recovery and 90% success rate my ASS!!!
PLEASE GOD HELP ME!!!
Allon , what syptoms to you have. I get thick mucus and the nose feels like to doesn';t get any resistance even though on CT scan's I have turbinates left, maybe not enough soft tissue. I blame DR.ANAND(A.K.A. THE BUTCHER) and hope that now one see's him. He ruined my life with a steriod shot.
I stick Q-tips in my nose, cut a portion off and put them at the top of my nose, that helps. One doctor said if I get the septum thickened it might help. I don't know any doctor's who do third time revisions , does anyone, does Dr.Houser.
I want my life back. it's to short.
I hope dr. houser can get this ENS reconized and doctors work together to come up with a surgical treatment to help us. I know of two people that shot themselves due to this. Also one went and shot the ENT specialist , then shot himself.
I just want to Live somewhat of a normal life. I'd be willing to travel if anyone knew of a doctor the could help.
Good-bye and Good Luck
Posted by kevin on 7/19/2004 , 3:46 pm 207.161.201.33
Hello , I would just like to wish you all luck. I have to decided to END MY LIFE. I can not suffer with the dryness and the open feelings anymore. I have turbinates left , but Not enough. The Doctor in New York Butchered me DR.A.
I hope the god forgives what I'm about to do. I'll never see my kids grow up and my beautiful wife.
I figure she's better of that hearing me complain and cry everyday. Every day is a struggle and enough is enough. They don't put animals thru the pain we go thru. And When you go to the ENT Specialist's they say every things fine and just rinse. Well I can't rinse 24 hrs a day. I wish there was a device that you could wer over you face that produces Humification and you wouldn't feel so Dry. All The doctors want to do is send you to a Pyscarist and put you on Meds. THIS IS REAL , WHY CAN'T THEY BELIEVE US.
We'll I lived a fair time span, And I regret ever seeing that doctor.
I hope in years that They realize not to touch turbinates and leave them alone. Or at least do lot's of medical intervention, before cutting.
AGAIN GOD PLEASE FORGIVE ME
Re: Good-bye and Good Luck
Posted by sh on 7/19/2004 , 8:16 pm , in reply to "Good-bye and Good Luck" 67.39.198.30
Kevin,
I, and the others on this board, believe you. Do not end your life - I implore you. Perhaps your nose could be surgically closed, or a trach, or alloderm implants? Any of these seem preferable to death. You will do your family more good alive than dead.
Please let everyone know that you are OK.
Re: Good-bye and Good Luck
Posted by Flushface on 7/29/2004 , 1:05 pm , in reply to "Re: Good-bye and Good Luck" 149.174.164.70
I constantly think about suicide and mentally rehearse different methods in my mind but I don't seem to be able to bring myself to do it. Thank god we all die in anyway. When I really seem to be seriously considering it I become so angry at the ENT that mutilated my nose that I want to kill him and not just myself allowing him to go on as if nothing is wrong. I live day by day hoping to read in the paper that he has been the victim of some accident or other patients revenge. Since I don't seem to be able to bring myself to kill myself while leaving him to live happily ever after and I don't seem to be able to bring myself to kill him because then I will have no choice but to kill myself. (I don't really want to die but misery is not really living anyhow)This leaves me Stuck doing neither which is at least some form of stability. Perhaps fantasizing in this way can help you cope on a day to day basis. Good Luck!
Re: Good-bye and Good Luck
Posted by Anonymous on 7/19/2004 , 7:45 pm , in reply to "Good-bye and Good Luck" 172.195.110.80
Kevin, I think about killing my self everyday. I even plan that I will do it, but I know I can't. I don't have the guts. And its somthing I havn't resolved. My life sucks so bad. All I know is that if I am not healed than my life will eventually end. I'm glad this life is not eternal, because than we would be screwed for eternity. Why don't you have dr. Houser examine you before you make this decision. If you still have some tissue in your turbinates, than it can probably be expanded with alloderm. Try putting aloe vera with vitamin E or you could try using afrin because it causes rebound congestion. I'm Sorry you have to suffer like this. Every day I think about killing the doctor who butchered me. but than I think I should just kill myself instead. You should try to get help from a doctor that isn't ignorant about ENS, like dr. houser, or there is a team of doctors in Chicago .
No matter what you do, I hope you don't have to suffer any more....
I just don't really know. I have suffered for 6 years and it hell. My turbinates feel like the don't swell up properly and It feels open to high. Also when I run now I feel like I'm choking. I rinse twice daily and I don't think I get as much Mucus. My throat and tongue feel dry. Are these symptons of ENS? Also WHo is Sh. I hear it's months though for Dr.Houser to do any type of surgery. I put Q-tips in my nose at night to reduce air flow. I feel Like a freak. I just can't do it anymore. I'll wait to hear if Dr.Houser answers this,But really I think part of the part is that maybe my cilia are damaged or slow and I feel no resistance.
IT's just time , that's all, spending all that money and no results. I can't be taxing my family anymore with this burden as she can find someone else and have a better life.
I'm leaving on tuesday, I have it planned where she'll get the insurance money and be financially okay.
It's not worth it
I honestly believe No ENT specialist can fix this. They can't put back what was taken. Also this ALLODERM , I don't think works as How many patients have actaully had it done and what were there results. A guy on this Board had it done in Chicago and 15 months later he's suffering again.
Dr.Houser, we never hear from as to how many actually have been done and what was their success rate.
My life has run it's course. The 27th will be my last Day on this earth and I know God will Forgive me.
If I can be reborn , Which i believe happens , then i will never See an ENT specialist again.
I have already told my wife not to take our kids to one, only for medical Management and not Steriod sprays or anything like that.
Good-BYE and GOOD LUCK.
I wish you ALL The best and Hope you find your cure.
BUT eventaully their is no Cure as Doctors Like Kern and other wash their hands of this and can't offer anything.
See you all in Heaven.
do you wear tape over your nose for ENS
Posted by david on 7/19/2004 , 3:55 pm 207.161.201.33
Does anyone wear tape over their nose particially to block some of the air. Does this Help. Any Suggestions?
what other items are used, I try tape over the collumella, over at night over the whole nose, even Q-tips with the ends out so you can pull them out in the morning.
What can be done about the thick mucus?
Important message
Posted by william casey on 7/22/2004 , 12:00 pm 141.152.228.52
I had been reading this Nose Board, only for information on Alloderm implants; I've had them, after researchig them, and I hope all will be well. I thought once when I was younger that this was "all in my head", because that's what ENT 'specialists' told me. I merely read these posted messages for info on Alloderm, but then I saw the message from the man who was planning to take his life. DON'T DO THAT!! People here have posted messages--we're all in the same boat, and Dr.Houser knows, and is on your side. If anyone wants any more information, just reply
Re: Important message
Posted by Francine on 7/22/2004 , 2:27 pm , in reply to "Important message" 198.110.249.30
William,
Please post the details of your surgery. When was it done? Who did it? Has it helped? What was actually done? We are all desparate for news about this procedure.
Re: Important message
Posted by william on 7/22/2004 , 4:27 pm , in reply to "Re: Important message" 141.152.224.189
To Francine: I "researched" the Internet, just trying to find something better than periodic antibiotics, and daily medicine. The product I originally read about was Cymetra, which is another form of Alloderm. Quite frankly, I almost backed out of this July,2003 surgery, due to age and my pathology. Did it work? Maybe for sinus infections, but I've had side effects from this surgery itself. I have always said that unless I had gone through all this crap, I'd see our problem as "sinus trouble". But, it's a disease, debilitating physically and emotionally; words you probably already know. Hope this has helped.
ENS
Posted by A on 8/22/2004 , 12:10 pm 64.12.116.209
I will admit it, this ens has given me OCD and Schizophrenia, Im afraid of any particles flying in my nose, which it constantly does. I can't take this anymore. That Ent could have helped me become normal again, but instead he made me some abnormal freak, that is going through unnessasary pain. I'm a real good person, I don't deserve this pain. I look out the window, watching my life pass me by. And I look out the window seeing everybody else enjoying life, and leading a normal life. Somebody help me.
Shortness of breath
Posted by DL on 8/7/2004 , 1:21 pm 24.218.13.152
Shortness of breath
Definition
Shortness of breath, or dyspnea, is a feeling of difficult or labored breathing that is out of proportion to the patient's level of physical activity. It is a symptom of a variety of different diseases or disorders and may be either acute or chronic.
Description
The experience of dyspnea depends on its severity and underlying causes. The feeling itself results from a combination of impulses relayed to the brain from nerve endings in the lungs, rib cage, chest muscles, or diaphragm, combined with the patient's perception and interpretation of the sensation. In some cases, the patient's sensation of breathlessness is intensified by anxiety about its cause. Patients describe dyspnea variously as unpleasant shortness of breath, a feeling of increased effort or tiredness in moving the chest muscles, a panicky feeling of being smothered, or a sense of tightness or cramping in the chest wall.
Re: Shortness of breath
Posted by K on 8/8/2004 , 8:57 pm , in reply to "Shortness of breath" 24.46.164.99
I have some dyspne which I believe is due to my turbinectomy which included the loss of airflow sensor nerves (trigeminal nerves) which were located on my turbinates. You may not be taking a full breath as you are not sensing the airflow in your nose. What I do which helps is that I take a full inhale through my nose. I then block my nose with my knuckles and let it out slowly through my nose. Try it. The resistance gives your brain the feeling of satisfaction. This is what I believe is missing; the satisfaction of breathing. Yoga teaches you this.
Re: AttentionNB Info re ENS
Posted by t on 8/1/2004 , 7:09 pm , in reply to "Attention NB Info re ENS " 203.2.182.16
thanks for sharing the info John,
I had this feeling that the humidifier and the assistance of the machine in pumping the air into the lung would help.
I have not been able to sleep properly during he last three years after a over zeolous nasal op. May have to aquire a machine somehow.
ENS Victims
Posted by Jenel on 8/25/2004 , 4:50 pm 67.137.177.115
Does ENS actually cause chemical changes in the brain that bring on clinical depression and anxiety? Alot of posts here seem to indicate this. If this has been medically established to be so, then this seems like an "Informed Consent" issue as well (see "Surgical Complications" post below). Does anti-depressant/anti-anxiety drug therapy offer any respite? I'm sorry so many of you are suffering such physical and mental anguish.
Please Help Me.
Posted by Y on 8/29/2004 , 2:53 pm 205.188.116.209
Is there any hope for someone with only about 10% Inferior turbinates left? Is there anything I can have done that will increase the size to maybe 40% permenatly. I really want to save this IT before it maybe goes away completly. Is there any injections, steriods, that have a permenant result. Im losing hope. Im only a 19 year old girl. God please help me, I'm losing my mind. Why did that Ent do this to me. Couldn't he have aleast leave 30%, I wouldn't be going through so much pain, that I'm going through now. Its like a constant battle, day in and day out.
Noses
Posted by Flushface on 8/29/2004 , 2:04 am 64.12.116.209
My poor nose began flowing lots of mucous this afternoon and along with a burning in my forehead and a constantly stuffy nose I came up with this idea. E N S is often said to occur years after initial surgery 5+ . Well I'm hoping that the nose spends years trying to remodel and hypertrophy it self and struggles to function. Unfortunately It is a very difficult battle because the surgeons have butchered the nose severely! Unless a really large amount of turbinates have been removed many people recover in a few years ( just a guess) the remainder unfortunately having fought a valiant fight with The empty nose ,dryness, infections begin to atrophy because a hospitable (some level of functionality)
cannot be achieved the nose than truly does become ENS. I think that it may take years to recover from a severe mutilation
enough to function and for the nose to cleanse itself. Unfortunately again people with to much turbinate tissue removed (It depends if the remaining turbinate tissue can expand and hypertophy to fill the nasal cavity) cannot recover functionality and the ENS may be symptomatic from the mutilation! Complete recoveries are probably rare when the immediate 1-6 month recovery period and the back to work in a week BULLSH*T doesn't occur. I seem to be getting a little more selling ability back but maybe my brain is just getting more sensitive to the odors that are being smelled. I did not begin sneezing for 18 month after my mutilation. I have noticed a very slight decrease in crusting when the mucous production increases but this is accompanied by Thick globs of sticky mucous being blown out ( Thank god it is mostly clear except for some white stuff and a very small bit of yellow. I think the white stuff is sloughing of the surface of the mucous membrane and the yellow is small amounts of mucous in crevices, channels or corners of the nasal passageways that have stagnated! My life is a living nose drama and unless I get a severe infection the blowing and flushing and examining and trying to assess anything that may present itelf along with the hocking and discomfort of thick mucous down my throat prevents me from living my life and my life has almost stopped exactly from the date of my mutilation! CAN healing really Take years and CAN the nose eventually recover??? I am praying that it does but my sanity seems to be fading into oblivion and I am becoming a mental case that no longer resembles my previous being! D*MN that B*stard! I can't believe this has happened and that the minor outpatient surgery has Destroyed the life I knew!!! WHY?? was it greed to perform as many procedures as necessary or Ignorance and the idea that every patient gets the works so they don't need to get reoperated on?? Well next month I will be able to get re-evaluated and I am still thinking on suing the B*stard even though I dont seem to be able to bring myself to the attorney I must do it! I also cannot imagine having another surgery even if there is something obviously wrong that can be fixed !! I am a functioning NASAPLEGIC and by FLUSHING and blowing and staying in clean air environments I am learning to live day by day. I still "THINK" my nose is recovering and on a scale of 1 to 10 with 10 being a perfect nose and 1 being a nonfunctional infected nose and 5 being an average nose with an ocassion infection and a deviated septum and other normal anomalies I think I started out with a 4 or just under maybe a 3.75. I should of been happy but I beleived the mutilator when he said I would benefit from surgery and that I would be better off! Now I've have spent 14 months as a 1 and 7 months as a 2 but I think a 3 is possible which might give me an occassionally functional nose with periodic flushing and 1-2 infections a year. Should I risk this and have my nose cut up and knocked back to a 1 again?? I don't know if I will risk it but pray that there IS something to be done like scar tissue build up , recirculation or something correctable. Well I'm sorry to Dwell on my nose and I think my nose probably lies in the middle of everyone here with some being worse and some not as bad and I hope everyone can eventually recover enough to maybe live a little again! good luck everyone.
Please Help Me.
Posted by Y on 8/29/2004 , 2:53 pm 205.188.116.209
Is there any hope for someone with only about 10% Inferior turbinates left? Is there anything I can have done that will increase the size to maybe 40% permenatly. I really want to save this IT before it maybe goes away completly. Is there any injections, steriods, that have a permenant result. Im losing hope. Im only a 19 year old girl. God please help me, I'm losing my mind. Why did that Ent do this to me. Couldn't he have aleast leave 30%, I wouldn't be going through so much pain, that I'm going through now. Its like a constant battle, day in and day out.
Re: Please Help Me.
Posted by Y on 8/31/2004 , 7:54 pm , in reply to "Re: Please Help Me." 64.12.116.197
I had my surgery when I was 18, It has been about 8 months now, and all I went through was perpetual torture. Not only physically but mentally. Thanks for your input. some people on this board are talking about alloderm strips being implanted is that the same as the grafts?
Re: Please Help Me.
Posted by I on 9/1/2004 , 9:33 am , in reply to "Re: Please Help Me." 172.196.21.63
Alloderm is tissue graphs, and strips of it can be implanted, and I know this would help me because I've done experiments to may my nose extremely inflamated, and a lot of the sympoms were better after that. but I don't have enough tissue.
I had my surgery when I was 16, and its has been 2 years of hell.
Re: Please Help Me.
Posted by Y on 9/1/2004 , 11:41 am , in reply to "Re: Please Help Me." 205.188.116.197
Did you find out how much Inferior Turbinates you have left? We are all going through pain for no reason, only if the doctors left the turbinates our lives would have been so normal. Oh God help all of us.
Everyone Please Read.
Posted by Iza on 9/1/2004 , 7:08 pm 152.163.253.36
Does anything really work to help ens, Im trying everything here, NOTHING is working, Oh God Please Help. Saline Gel does not work, I have to reapply it all freakin night long, Im losing so much sleep. And it doesn't freaking work, my nose is still dry as my grave yard. People say there nose is to open, I say My nose is closing in, Without those turbinates, my nose is closing tight with real bad dryness, if I had those turbinates it would be open and feel loose, because of the moisture, and humidity. At night I feel like someone is stabbing me over and over again every freaking second. I can't take this, I dropped out of college because of this. What gel will work. For me saline doesn't. I mean I use the tube in 2 days, than I have to buy another one. My humidifier is not doing anything. My life is ruined. My doctor knew I was a nice person, shy, caring, honest, why. This has ruined my social life, I thought the surgery would improve it. Every morning I'm tired and drained, because I get no sleep, no matter how tired I am, I only feel the pain from my nose, nothing else. It's like my mutilated nose is taking over my soul and mind. I am a really nice person, my doctor knew that, why, why. Please someone help me. And the scary part is that the doctors I have seen, don't really understand what I'm going through. Some Doctors flat out tell me get over it, some gave me Zoloft, and say its my anxiety.What?
Re: Everyone Please Read.
Posted by Francine on 9/1/2004 , 7:16 pm , in reply to "Everyone Please Read." 198.110.249.30
Iza,
You may want to try a saliva drug like Evoxac or Salagen. See my reply to AC below under "ENS Solutions". Do not stop trying. Try topical estrogen cream. It causes stuffiness in the nose. I got mine online, if you need the website let me know.
Take care and read my post to AC below...read all of my postings there. Something might help. I would also like to say that I had to get on an antidepressant after my surgery and it helped, unfortunately, many antidepressants cause a drying effect. I am on Paxil, a very low dose, but I had insomnia so bad after my surgery I had no choice. I also take an antianxiety drug, a very low dose at night, it is called Ativan. Try, and do not stop trying. Let me know if any of these things or any of the things from the posts below help at all.
Take care,
Francine
Injectables/To: Dr Houser and everyone
Posted by Y on 9/1/2004 , 6:50 pm 152.163.253.36
Is there anything injectable, that will have a permenent result causing more mucus and turbinates to enlarge, on little turbinates that are left? Are there any steriods or anything that works better than alloderm? One doctor said something about a cortisone steriod? But he said it would make me fat, I really didn't understand what he was saying, he was a plastic surgeon. All help will be appreciated, Thanks.
Re: Thanks Everybody
Posted by t on 9/2/2004 , 12:38 am , in reply to "Thanks Everybody" 203.2.182.16
ff,
We are here becuase of the carelessness of a very obnoxious and greedy profession. I would blame your actions to the person who caused this suffering, not you.
I confronted the ENT in a reconcilation meeting, and he believes that his work is 100% safe, so there is no need to talk about risks, as well as showing off his work (reducing turbinates) on children.
Only if this guy's turbinates are cut, then he would understand the pain that we suffer at EVERY BREATH 24/7.
It would take the body a while to re-adjust itself through the compensatory process, so I hope that you will get to a bearable level in due time.
I learnt to play "GO" (Japanese Chess) two years ago as a way to ignore the pain and it helped.
Good luck.
Re: Cant take it anymore
Posted by Martin on 9/10/2004 , 1:21 pm , in reply to "Cant take it anymore" 24.47.56.239
I have been living 11 years with post surgical(deviated septum) turbinate problems. I.E., massive infections and post nasal drip . Avoid surgery..Avoid surgery. Get the Grossan pulsatile irrigator attachment which fits the waterpik. This device amazingly cleared up my infections. However the surgery added a new component, a sensitivity to cool/dry air resulting in severe irritation to my nasal membranes and making it impossible to get sleep; This adversely impacted my daily existence to the degree of "trying to survive." This condition worsened over time. In the past 3 years I've had 2 infections emanating from the rear palette area wherein I had to take penicillin to cure it. Over the past 11 years I visited 3 different ENT's on this issue. They all repeated essentially the same vacuous routine. They see nothing on the cat scan of the sinuses and after prescribing several nasal sprays they have no solution for me. Either they truly can't identify with the symptoms, or they don't want to get involved in complicated issues(I'm damaged goods) or they are simply ignorant in regard to concepts outside their normal training and experience. I also visited an allergist, post surgery, for 6 years with no affect. I am always trying to find methods of coping, with this latter issue. In my case only my left side is affected. I've been experimenting with a cotton nose plug, moistened in mineral oil, to slow the movement of air. It has a definite beneficial affect but is difficult to sustain. The plug has to be pushed towards the middle, inner tip to avoid the nasueous nerve but also must allow a very slight amount of air to get through. You have to experiment. It allows me to get 4 to 6 hours of "disturbed" sleep. Now I am experimenting with a 3 inch piece of folded cloth that wraps around my face, over the bridge of my nose,just below my eyes and binds around the back of my neck. I slide a 1_1/2 inch dry wad of cotton inside the fold next to the bridge of my nose so that it presses inward, against the outside of the nasal passage and thereupon slows the flow of air. I am fairly certain that the reduction of the flow of air has a beneficial affect. In the winter months a humidifier next to my bed is a necessity. Cleanliness and air purification can also help but the major objective, that I've deduced for my case, is the reduction in the rate of air flow through the nasal passage. Yes, people begin to think you're crazy. Hang in there.
I hope that my experiences might be of help to you. If you have any new insights let me know.
Smell
Posted by 3 on April 15, 2005 , 10:09:05 64.12.116.202
You know the most sickest thing I have ever experienced, which I experience one way or another everyday is the sick feeling when you can't smell anything. You can't smell air, good scents, perfumes, what your shampoo smells like, it all just makes me more emotionally f***ed up. And the time when I really feel like killing myself is when I can sense some awful odor or stentch, thats the only time my nose can sense some smell. Whether Im taking out the trash, anywhere where theres foul odor I get this awfull sensitivity in my nose like im about to pass out. Naturally anyone who doesn't have Turbinates in their nose is going to react like this. I honestly can't take this anymore! OH DEAR LORD HELP
I have had ENS for almost three years now. I started suffering immediately following my surgery (to correct a deviated septum and sinusitis), so I was told; but the doctor removed as I am told, practically all of my middle turbinates and inferior turbinates, without my permission. I have this terrible feeling of swallowing huge globs of phlegm (going down the back of my throat) all day, every day. I feel as if I am going to choke and I have a hard time breathing. I have been to at least ten of the so-called best ENTs in New York ; most of whom had no idea what my problem was, none of which told me I had my turbinates removed until the last doctor I went to. I tried to sue the doctor, but you know, they all stick together and you have to find someone who will sign on the dotted line. I have been seeing a pyschiatrist for over two years; have contemplated suicide many times, but just don't have the nerve. I am always depressed and to top it all, I have had Bells Palsy (paralysis of the face) for six months now which I also attribute to the surgery. Stress plays a big part in Bells Palsy and I have never been under as much stress as I have been while trying to find out what my problem was after my nasal surgery. I get strength in talking to other people who are experiencing the same thing I am. Please e-mail and let me know how you cope with this terrible illness. I would be willing to take part in anything as I also believe the public should be made aware of what some of these doctors are doing at there, for the sake of money is how I feel. My life is totally ruined and I am fighting to stay in control.
Here is my story. I recently read an article on the Empty Nose Syndrome (ENS). After reading the article I wasn’t sure if there was anything one could do for the symptoms of ENS but it certainly reinforced in me that I definitely have this condition. I had cryosurgery on both of my inferior turbinates when I was sixteen, I am now thirty seven. It has only been in the past eight or nine years that most if not all of the symptoms that were mentioned in the article have surfaced as serious problems. <?xml:namespace prefix = o ns = "urn:schemas-microsoft-com:office:office" /><o:p></o:p>
The biggest problem I seem to have is a terrible sensitivity to cold air, and I guess this shouldn't be a surprise because I know now that one of the primary purposes of the turbinates is to warm and humidify the air we breath. In addition to a feeling of way too much air passing through my sinuses and a lot of crusting, I simply cannot stand the cold winter air, similar to a man in the article. My sinuses are bone dry most if not all of the time and it negatively affects so many things. In the winter I have to sleep under the covers with the heat cranked and a humidifier close by. I cannot go outside for any real period of time without discomfort. In the summer, I have to deal with the air conditioning, which I find extremely uncomfortable as well. It's a horrible catch-22. My sense of smell has also been effected but it's not the main problem. I also have problems with my voice that I believe are a direct consequence of ENS. My voice lacks proper resonance and it gets fatigued often. I find it difficult to project my speech as the day goes on, and singing, something I use to once to professionally is not even possible anymore. I believe that this is caused by the lack of mucous production in my nose and the dry state of my vocal cords due to ENS. I read somewhere that normally we swallow almost a gallon of mucous a day and that helps to lubricate the nose and the vocal tract. I've tried to simulate mucous production by using pepper in my nasal cavities which produces some congestion and mucous flow, I can see almost immediately that things improve; but this is not a reasonable solution.
This problem has made my life a living hell, and I would give anything to have that surgery back, anything... I have developed a lot of psychiatric problems (primarily depression, anxiety) due to the limitations that this places on my life. Please let me know if there's anything you can do, and if not, please pass this information on to someone who may be able to help me. I would be happy to set up an appointment to see you if you feel it necessary.
Thank you for your time.
SLEEP SURVEY
Please post your experience.
How long ago was your surgery?
How was your sleep before the turbinectomy?
How has your sleep been since the turbinectomy
I had my turbinates "restructed" January, 2001. Prior to my surgery I was sleeping without any problems. Since my surgery I have a hard time going to sleep. My throat feels like it is closing up on me from lack of moisture. I have a hard time swallowing. I sleep with a humidifer on every night but it really does not help too much. I get up several times during the night for a drink of water. I never did this prior to my surgery.
I was having trouble sleeping before my surgery...but since it has definitely been a problem. Especially in Winter. Summer seems to be the best time for me. I get so dry that swallowing is a definite problem. I have had a better time of it recently since I have been living with cotton plugs in my nose and sleeping with a dust mask on. Pretty crazy...I do not intend on spending the rest of my life this way. Thanks for starting the survey.
Surgery was November 27,2001 (Septo-plasty, turbinecomies, Rhinoplasty) I was sleeping very well before the surgery, I was feeling generally well before the surgery, I just had sinus preessure in my frontal lobe that would drive me crazy from time to time. I was diagnosed with Chronic Sinusitis, and Allergic Rhinitis which in itself isn't fun, but doesn't even compare to how I feel post-turbinecomy- my sleep is horrible, it takes quite a while for me to knock out-I'd say around 11PM to 12AM and I usually wake up around 4-5AM in the morning when in reality I should still be tired, and a lot of times I'll wake up in between that for no apparent reason. I just feel kind of numb all day long, I have head pressure, my ears are dry, and some times I feel pressure in their as well. It's just an overall misery.
I always sleep like a baby. I would wake refreshed and clear. Now, Five years after surgery in which my healthy middle turbinate were removed without my permission and without my knowledge I can not sleep in the normal way that I used to. I wake up 2-3 times a night due to the burning / dryness in my naso-pharynx. I get up to drink, go to the bathroom and to irrigate my nose with salt water. In the morning I am in a delirium. I am exhausted. I feel as if a hadn’t slept. I always have a humidifier on. Often I need to take a tranquilizer to sleep. But I still get up. The burning seems to be more intense at night. Often I use cotton and tape to plug up my nostrils. I also put a sheet over my nose in order to stem the airflow and create humidity. My treating physician told be that the reason that my mouth and tongue is so dry especially in the morning is due to mouth breathing. He said that since my turbinate have been removed that I can no longer sense airflow and that the mouth automatically opens as a safety precaution when it doesn’t sense airflow through the nose.
SMELL SURVEY
Please post your experience .
How long ago was your surgery?
How was your sense of smell before the turbinectomy?
How is your sense of smell since the turbinectomy
My surgery was in December of 1999. I had a good sense of smell before that time. Now I have little sense of smell. Something has to be pretty strong before I smell it. Also, strong smells, like chemicals, cleaning fluids, etc....produce allergic reactions that I never had before. I feel like my nasal membranes dry to the point of constant irritation....and strong fumes definitely set them off. UGH!!!!
I always loved the smell of the Honeysuckles around the golf course near my house. I always loved the smell of the sea and the morning air. I always loved the smell of coffee and cinnamon. Now, Five years after surgery in which my healthy middle turbinates were removed without my permission and without my knowledge I can no longer smell these aromas. My nose is numb. I am living in a world of sensory deprivation.
Dry Mouth & Soure Throat SURVEY
Please post your experience.
How long ago was your surgery?
What was your Mouth and Throat like before the turbinectomy?
How has your Mouth and Throat been since the turbinectomy?
Surgery in Dec. of 1999. I had dry mouth before the surgery. Since the surgery my main symptom is dry mouth and an inability to swallow comfortably. This is my main problem. I can no longer exercise because I have to mouth breathe and it makes my problem worse. This is the most frustrating aspect of this entire ordeal for me.
Burning, Dryness SURVEY
Do you have crusting in the nose?
Please post your experience .
How long ago was your surgery?
Did you have any of the above symptoms before the turbinectomy?
How have you been since the turbinectomy
Prior to surgery no burning or dryness in nasal cavity.
Post surgery dryness is always present unless irrigated. Dryness can becomes so intense as to be disabling. Buring is present on an irregular basis even if nose is irrigated. If irrigation is not performed burining can become intense, continuous and disabling.
I am in constant fear that I might not be able to irrigate my nose. For example, if I should travel to a foreign country I might lose my irrigation supplies.
Surgery in Dec. of 1999. No burning and dryness before surgery. Since surgery, constant burning and dryness to the point of it being disabling. Since I have been wearing cotton in my nose...I do not have symptoms as intense as I did previous to my surgery. Not a great solution. Seriously considering surgery...there are two doctors in the country currently doing ENS surgery.
HELP ME
My family commitied me to a psychiatric ward of the same hospital which removed without my knowledge either before the operation my middle turbinates.
I am suffering a slow death and now have my second infection which I prefer to have rather then the dryness which makes me behave as if I was insane.
I want my story to get out there.
My name is Larry Klepper
I have to go back to the hospital tonight as I was in for 3 weeks and was let out on a two day pass.
There is no one in Canada who understands what turbinates are and what happens when they are surgically removed including ENT doctors/
I do not want to die in vain.
Please help me and get this story out there in the PRESS- like the NY TIMES
I can be reached at the Jewish General Hospital 514-3408222 ( i am in the psychiatric ward) or leave a message at my home 514-9318309
HELP ME AS i AM DYING A SLOW HORRRIBLE WAY WITH NO ONE TO TALK TO--- MY FAMILY AND FRIENDS DO NOT BELIEVE ME AND THINK I SHOULD BE COMMMITTED. I have no one on my side except a few of you who suffer the same way> PLease HELP ME
I am home now but must go back tonight at 8pm
Hi Larry: I realize that you wrote this some time ago, but I am just seeing it. I am very sorry for your circumstances and I want you to know that I believe you and I don't think you are crazy. I think that when people don't have an answer for something, yes, even ENT doctors who are not familiar with Empty Nose Syndrome, they start to shout "crazy", you are "crazy". Well, I also had my middle turbinates removed without my knowledge and I am living through everything you have and more. My family, although behind me and seemingly understanding that something was done to me, tend to go along with the doctors sometimes when they get tired of hearing me complain. I am certainly not crazy although made to feel like it sometimes. I am seeing a psychiatrist, but for my own peace of mind. I realize that I am going through something that I will not be able to handle alone, without help and without medication. I have to stop myself from returning to the doctor's office who did my surgery because I harbor such animosity towards him, I am afraid of what I might do. I do not intend to go there and prove everyone right. So I continue to work every day, wondering how long it will be before I lose this job or before I just give up. But life holds no enjoyment for me anymore. Hang in there Larry, I can't offer you false hope, but you try and be strong and I'll try and be strong and maybe one day we will see a bright light at the end of the tunnel.
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