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.
I have a very difficult time in winter. The lack of humidity causes terrible pain and of course let us not forget the chronic infections. Even with several humidifiers running thru my home it still doesn't help. Has anyone actually moved to a warmer more humid climate to escape the long cold winters?? I live in Michigan . My ENT was suppose to reduce my turbinates to help with my chronic infections. Instead he completely removed my inferior turbinates. I am sooo miserable. Linda
Hi Linda - I, too am from Michigan - The winters are VERY VERY hard on me and I am feeling depressed already about fall coming. I plan on staying here maybe seven more years and then at least moving to a warmer climate at least in the winter and coming back in the summer... Where in Michigan do you live - I live near Saginaw and have always wanted to hear from someone from Michigan .
Kathy
Hi Kathy,
I live in Huntington Woods Michigan near Birmingham and Royal Oak area. I had my inferior turbinates completely removed (damn asshole surgeon - in a lawsuit right now). Sorry - still very upset. Last winter was soooo terrible for me. Infected all winter. Cannot process bacteria. My husband and I like you were thinking of moving to a warmer climate but we have 3 kids and all are family is here. Easier said then done. We will go to Florida this winter to check it out though. This summer has been fantastic. Only one infection so far. What about you?? Linda
----- Original Message ----- From:peace1255 To:Empty Nose Syndrome Sent: Tuesday, July 22, 2003 5:39 PM Subject: Re: how do you survive in the winter months?
-----------------------------------------------------------
From: peace1255
Message 2 in Discussion
Hi Linda - I, too am from Michigan - The winters are VERY VERY hard on me and I am feeling depressed already about fall coming. I plan on staying here maybe seven more years and then at least moving to a warmer climate at least in the winter and coming back in the summer... Where in Michigan do you live - I live near Saginaw and have always wanted to hear from someone from Michigan .
Kathy
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I am dying in Montreal after having my middle turbinates removed without my knowledge or consent.
I also suffer from asthma and allergies to dogs and cats and sleep apnea.
I have been locked up in my room for nearly two years now.
I have chronic infections and cannot sleep and I am unable to take being locked up in my room much longer.
Anxiety & Depression SURVEY
Please post your experience.
How long ago was your surgery?
Have you experienced or were you diagnosed with either Anxiety and/or Depression before the turbinectomy?
Have you experienced or have you been diagnosed as being Anxious and/or Depressed since the turbinectomy? If so what medications have you taken or are currently taking?
Before Surgery, I had a lot going for me, I felt generally good about myself, very confident and a generally good natured person. In my mind I had everything planned perfectly, I had just finished taking three College classes and was due to go to go a classified location in the desert(I'm in the Air Force) My biggest complaint before surgery was gunk and snapping sounds coming from my forehead, and off and on sneezing throughout the day, and a mental fog that made it hard to think clearly and concentrate, especially for college. I dreaded the thought of being in a dangerous situation in the middle of the desert with the (at the time I thought) horrible sinus condition. Getting out of the situation would be next to impossible... for chronic sinusitus is not considered a bad enough medical condition to get out of a TDY(temporary duty), so I opted to find my own help and alleviate the situation the best I knew how...Sinus Surgery. After Surgery I woke up in a daze, feeling really weird and disoriented with a constant dull headache and dryness everywhere(Ears, Nose, Throat) Thank the Lord my TDY was cancelled because I for surely would have did something crazy when I was over there under those conditions and stress. I went to a Family Practicioner on base approximately two months later, and told him I hadn't been able to sleep since the surgery and felt like I was going crazy, he diagnosed me with depression and thought that I might of had a reaction to the anasthetic...he put me on Remeron 15 mg which did help me get some sleep, so I stayed on it for about six weeks-I just felt numb and even more dry and found out over time that I could get enough sleep to not use it(and it wasn't clearing the depression). I've seen a Psychologist and a Psychiatrist and frankly even though I'm suffering felt that I'm better off not to see them, I feel like its just a waste of my time. The psychiatrist,..the 4-5 times I seen her,.. I had to refresh her memory and re-iterate what the original problem was for the first fifteen minutes of the thirty minute session...it was a joke...I had an anxiety problem I'd say for the first 4-5 months post surgery and I'd say now I'm finally coping with the fact and realize that there is no quick fix and I'm going to have to deal with this...theres really no way though to get over the depression because theres a real physical problem... one thing that I don't understand and only have a little knowledge of is the proper "Nasal Rhythyms" that the turbinates create when healthy and intact. I've been told(and it makes alot of sense) that without the proper expanding and contrasting of the turbinates you don't breath correctly causing a lack of oxygen to the head-I have a constant dull headache and my brain feels heavy and kinda smashed.. sorta like its begging for air!!...I've seen a decline in my motor skills...sometimes I feel a little slow to the point, in fact just typing this, I'm slower than I used to be....I've seen a change in my thinking....I just feel an unexplained bad....Just a very miserable experience.....I hope this message encourages others to post....Some out there might look at this Post and say, who does this guy think he is.....Why is he putting such a long post....or might think it foolish(to post such a long message)....I have nothing to hide, and I want people(especially doctors) to understand the devestation that turbinectomies cause to people...cauterizations, coablations, many different types of reductions and probably many other turbinate procedures have caused so much pain, so if your reading this and you have had some kind of altering of the turbinate in any way,please post! Theres a reason why your hurting....I've been seen by 6 ENT's since the surgery...two have confirmed I have ENS, two who know that I have problems and are scared to say those crazy three words, one ENT who I'm not sure even knows what ENS is, but knows that it is an insane practice to mess with them except for very rare occassions, and one who is an advocate of turbinectomies and thought I needed more tissue taken"to be totally emptied out"...total insanity....the man should lose his license.... it pains me to think he still performing this surgery, totally destroying others lives. I've probably said enough for now but for those who are reading these posts, I urge you to post(not necessarilly to mine, just anything)....we can collectively beat this. God Bless All, and for those of you who believe in the almighty God, creater of this earth and our being,so intricately woven with sinews and ligaments... I urge you to pray about this feverishly...if his hands in it...it will be blessed....God Bless, Shane
Since my inferior turbinate reduction in Dec of 1999 I have suffered severe anxiety and depression. I used to exercise to remedy any tendency towards depression before surgery...and only had once suffered a mild depressive episode in my thirties...(am now 47). Since the surgery I have had to go on an antidepressant. The kick is that antidepressants cause dry mouth....so ironic...and most doctors do not believe in, or understand ENS so they kept telling me that the dryness symptoms of the new SSRI's were so insignificant that I must be really psychosomatic...but what they failed to realize was that I was already extremely dry in the first place and was going to have a way worse time of it getting on and staying on an antidepressant. I now take 10 mg. of Paxil daily (1/2 the usual adult dose), after trying nearly every other SSRI in existance...including Paxil....I finally came back around to the top of the order and it was the best of the worst so to speak.....and I also take .05 mg. of Ativan (a tanquilizer) each night for sleep....never in my life have I had to be on either one of these types of drugs. Indeed, I have always avoided prescription drugs if I could help it.
I suffered a complete nervous suicidal breakdown after my surgery when I could no longer sing or move around...I am a dancer as well...the antidepressant saved my life but I would give anything to get off of it.
I had a bilateral turbinate reduction through means of cryosurgery. My inferior turbinates were paired back after numerous complaints of breathing difficulties; at the time I did not know what turbinates were and what was what in store for me... I was sixteen. Twenty one years later, I am not thirty seven and my life has been a miserable struggle to stay alive. I've been in and out of psychiatric hospitals for almost the entire time. I have tried to commit suicide numerous times unsucessfully, and honestly, I don't really have any idea why I'm still alive... I have been seen by numerous ENT's as well as Psychiatric doctors over the years. I have been on almost every anti-depressant and anti-anxiety medication known to man, but to no avail.
Most of the doctors say that my depression is a chemical imbalance in my brain... but I know better. My mood disorders are a direct consequence of living day to day with my physical problems, and the consequences of surgery; and you are the only people that can actually relate to what I am saying. My depression was not there before my surgery, my anxieties were not there before my surgery; it doesn't take a brain surgeon to add two plus two. In reality, most doctors don't really "want" to add two plus two, because then they would have to own some of this burden that has become my life. Don't admit that this problem is real, that it even exists, just turn the other cheek and take your big fat paycheck. I haven't posted much to this board because honestly I am just so tired. I've grown weary of a fight that I know I cannot win, with an establishment that is so so powerful, and I really don't even care anymore.
My family commited me to a psychitatric hospital in Montreal and I got a day pass to get out today. I have been there for three weeks and there is not one doctor in this huge hospital and considered one of the best in MOntreal who has a clue about ENS and that my middle turbinates were purposely surgically removed from me.
I have been put on all types of pschotropic drugs which have done me more harm then good and I am getting sicker and more depressed. I have to return to the hospital tonight at 8 and I am going back to One Flew Over the Cuckoos Nest and suffer a complete depression. It is miracle that more of us have not gone clean crazy from the way we are treated.
Larry
I was sent by my family to a psychiatric hospital where I got worse from my smptoms and they treated me as if I was crazy.
I am out on a day pass and have to go back. I do not know what to do.
Lawrence
Marty,
I am there were you are. I dont know why I am alive. The antidepressants have done nothing for me. I am at home 24 hours a day and going crazy. I have been suicidal and have been in a psychiatric hospital and now I am going crazy at home. I suffocate if I do not have humidity at at least 60% in my house. I cannot fight the establishment and now I have prostrate cancer which I let fester because I wanted to die naturally. However, the pain is getting worse.
My family and friends think I am crazy but I have been driven crazy by having my middle turbinates removed. I cannot fight on any longer and the pain from the prostate gets worse.
I do not know how to get out of the house without suffocating. What do you do. My days are numbered. I cannot go to a hospital where the dryness is so intense I act like a madman and they will commit me again. I cannot take this suffering and dont know how you lasted so long,.
Larry
Are you saying that you have prostrate cancer which you let fester because you want to die specifically because of the devastation you feel and experience as a result of your turbinate surgery? I can certainly understand that if that is what you are saying. At times, I wished I would get some "well known" and respectable disease that would kill me so people didn't think I was nuts. Like you, I do have multiple disabilities or disorders or (whatever?) that plague me and have so for many many years; but nothing that will kill me... :-( Other than Depression, which untreated can lead to suicide. Suicide, a "thought" that does not escape my conscious mind not a single day. But, even given that option, I still hang on. I really do not know why. I don't have a strong religious or spiritual side of me that keeps me going. I think I still remain breathing because I believe that the devastation I would inflict on my family would be horrible and unfair (not that life was meant to be fair...). Only my Mother and Brother are left, my Dad just passed away... I am sad. But, as I feel the sadness, there's something inside me that doesn't want to leave my Mother and Brother alone in this world. I guess it's just love. Larry, I have some more things I want to say to you. Let me know a little more about your life when you have the energy. How old are you? Are you married, children, etc.? What are your passions?
I'll leave you with this.. A quick quote from a WWII concentration camp survivor. "To live is to suffer, to survive is to find meaning in the suffering..."
Just wondering, is post-nasal drip a common feature of ENS which wasn't there before the surgery? Also is changes in voice or experience of dysphonia common?
Post nasal drip is by far my most annoying symptom. I didn't have it before I had my inferior turbinates reduced by 75 percent in 1992. The post nasal drip I have is mostly on my left side. It never goes away completely. It is less sometimes but never is it good.
Post Nasal Drip is my worst complaint since I had surgery and developed ENS.
It's pretty constant and quite annoying. I was quite a singer too before
the surgery. I'm a has been now.
Can someone out there please tell me how they handle their post nasal drip. That is my worse problem also. It never ever stops and I find myself always gasping for breath. If I could find a way to get that under control or get some kind of relief, I wouldn't be as bad off as I am. Please somebody help.
A surgeon removed all of my inferior turbinates many years ago, because I had some obstructed breathing. I was later diagnosed with Scleroderma, an autoimmune collagen vascular disease that can cause additional dryness, in addition to many other serious aspects of the disease.
I suffer from pain on the nasopharynx side of the soft palate. By this, I mean the area just above the soft palate in the back of the mouth, which is actually considered the back of the nasal cavity. I know that this area isn't lubricated properly due to the reduction in mucus production. However; the pain is often too much to be accounted for by dryness alone.
I drink 2.5 gallons of water a day, hold ice cubes against the back of my mouth, chew gum and sugarfree mints to try to reduce the sensation. I also take Humibid to attempt to spread the reduced secretions.
Does anyone else who's had turbinectomies experience pain specifically in the area just above the soft palate in the back of the mouth?
If so, I would greatly appreciate it if you could let me know how you are coping with the problem.
Also, has anyone who's had bilateral total inferior turbinectomies later been diagnosed with a collagen vascular autoimmune disease (like Sjogren's Syndrome or Scleroderma) that would make the problem worse?
Thank you for taking the time to read my lengthy post.
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My name is Francine. I had sinus surgery (inferior turbinate reduction and part of my septal bone removed) in December of 1999. I have since been given the (probable) diagnosis of Sjogren's. My problem is lack of saliva in my mouth. I also had reflux surgery in October of 2001. Both surgeries have left me with and extremely dry nasopharynx. I suffer all day with dryness on the right side of my nasopharynx. Sometimes it gets so bad I have trouble swallowing and suck down (or cough up) greenish yellow mucous. I have teeth infections and am looking at losing all of my teeth.
Here is what I do to survive. Chew gum (Biotene....gum for dry mouth). Biotene also makes special toothpaste and mouth wash and gel (for the mouth)....I am not too impressed with the mouth get...however, the gum, toothpaste and mouthwash have worked wonders for me...do not chew regular gum or use regular toothpaste. You can get Biotene products at most Walgreen and Rite-Aid type stores. I am also on a saliva drug called Evoxac....I do not know if you are familiar with Salogen....that was the first saliva drug....but, Evoxac is a newer and better drug because it is time released. I take it three times a day, when I eat my main meals. It also has worked wonders for me.
Just a word of caution, drinking lots of water can lead to an increase in urinary output, which, ironically, can cause a dehydrating effect on the body. Watch your electrolytes...autoimmune diseases can be greatly affected by any change in electrolyte balance. Another word of caution, be aware that drugs like Evoxac and Salogen work on all of the excretory glands (including the kidneys) so they might actually stimulate the kidneys to void more...thereby nullifying their positive effects. This happened to me when I first started taking Evoxac. I went to a urologist afterwards and he suggested that I take an over the counter supplement called Prelief that neutralizes the acidic effects of certain foods...I noticed that it also helped with neutralizing the negative effect of the Evoxac on my kidneys.
Marc, ENS is so much worse for people with autoimmunities. I suffer everyday.
I hope this has helped. Please let me know.
Francine
Thank you for your reply.
I certainly sympathize with what you are going through.
I do use Biotene products and find them to be very helpful. However; I have not tried Salagen or Evoxac.One potential obstacle is the hyperacidity of the stomach that may result. Due to my Scleroderma, the valve between the stomach and esophagus does not close down. Therefore, I take the Proton Pump Inhibitor (Prevacid), have modified my diet (including avoiding acidic foods), tilted my bed and wait many hours after dinner to go to sleep. Since the relief isn't complete even with this regimen, I would hesitate to add a medication that could increase stomach acidity. You mentioned having reflux surgery. With Scleroderma, this usually isn't successful. I also take so many other medications and would be concerned about drug interactions from this additional medication.
In my case, the dryness in my mouth probably isn't as severe as yours. My worst problem with dryness is the dryness and pain localized to the area just above the back of the roof of my mouth, in the back of the nasal cavity. When I occasionally feel mucus drip into this area (like I sometimes do after the consumption of milk products), it momentarily helps reduce the pain.
Do you know if anyone else have this specific type of problem?
You had mentioned that a part of your septal bone was removed. Was it the whole front portion of the septum or was the septum thinned?
Other products that you might find helpful would include Spry Dental Defense System Sugarfree Mints and Xlear Nasal Wash with Xylitol. Information is available on their web site at www.xlear.com.
Best wishes for improvement to the maximum extent possible,
Marc
What type of test did you have done to determine that you, indeed, have scleroderma? Is there a specific biopsy or test? Let me know...because I have suspected scleroderma in my case as well. My problems became much worse after the 1. sinus surgery and 2. fundoplication surgery (for heartburn). Your doctor is right, that surgery will give you many more problems if you have scleroderma.
Take care and drop another line if you get the chance.
I would love to talk to you, if that is at all possible.
<Marc I have a similar problem, i am “happy” to find another people than have a similar problem. Sorry for my english,I am writing from Spain
My dryness and irritation are in the back of the nasal cavity,above and near the softpalate and the rinopharinx,its a problem specially when i have to speak more than 30 minuts;
¿do you have problems to speak? It’s the worst for my,.
I tried saline serum but its not good ,i think that we need a sustance with a gel or creme texture that keep more time in contact with the nasal mucose.,the saline serums have a temporal effect and some irritant.
I tried lots of products biotene etc but i cant find a good “solution”.
Another day with more time i will try to explain what things we can do to try to solve our problem. Today i have a few time to write and its slow for me to write in english.
Now i just purchased a nasal GEL from Switzerland, Nose fresh i will try if a GEL texture helps,but im not very optimist.
I have a double problem;
1. the orl said that i have an “autoinmune” problem in my nasal mucuos and its dry .
2.I have a deviated nasal septum secondary to an accident.I NOT surgery of this.
After speak with a lot of ORL specialist i undesrtood that the nose fisiology
Is very complicated.
My ORL said me not operate my nasal deviated septum because the surgery can produce a secondary effect DRY of the mucous( I see lots of cases in this forum)
And in my personal case if i have dryness without surgery surgery will be contraindicated.
But most of my problems are in the right side because 80 % of air flux comes from the rigth side and its not good ,but i cant surgery.
While it is unfortunate that you have the problem with dryness, at least the doctor discovered it before performing surgery that could worsen the condition.
Like you, I have "dryness and irritation in the back of the nasal cavity, above and near the soft palate".
I too have tried numerous products. Simultaneously gargling with Biotene Mouthwash while irrigating the nose with sterile saline (and then allowing the saline to drain into the sink) seems have a temporary beneficial effect.
An ice cube in the mouth in direct contact with the soft palate is another option for a temporary reduction in the sensation.
Another alternative, sugarfree gum chewing, sometimes lessens the sensation.
Your idea of a nasal gel that will not quickly evaporate like saline will, is a good one. However, there is the possibility that this gel in itself could sensitize the already irritated soft palate/ nasopharynx area. I had tried a product called Ponaris which
contained the oils of pine and eucalyptis. While it provided more long lasting coverage, it sensitized the affected area, so had to be discontinued.
If there was a substance more similar in composition to human mucus that is normally produced, that could contain a preservative that isn't sensitizing, this might be a big breakthrough for us.
It would be great if you could let us know if you discover any other beneficial products or regimens to help alleviate our problem.
iv had empty nose syndrom for about 5 years now and im losing 25% of my left ears hearing and i suffer from many things, im not trying to get sympathy or anything...Although its hard being 17 and trying to be a normal seventeen yer old.I just thought this site was great knowing theres other people....I am the youngest in history with this and never knew there were this many people with it ....
I haven't lost my hearing but my ears itch often after the surgery. They are also very dry. I often feel some liquid/glue feeling slowly moving in my ears while I am lying on one side. Doctos says that my ears are clear.
General : Second Post re ENS/Atrophic Rhinitis - have not seen posted
I have not posted for a while, but I am suffering terribly and thought someone might be able to help me. To refresh your memory, I have ENS and Atrophic Rhinitis. I have never suffered any crusting or pain in connection with these, just a tremendous amount of mucous drainage from my nose down through my throat. I have been giving myself saline irrigations (plain salt) once or twice a day which in the beginning (its almost 4 years now) helped a bit, but the symptoms have gotten much worse and the irrigation is not working well anymore. I usually walk around during the day with cotton up my nostrils but now even that is unbearable. For some reason, the night is the worse. If it were not for sleeping pills, I would not get to sleep at all. Something must trigger it at night, I have no idea what. I lay up there clearing my throat and swallowing mucous, phlegm, I don't know, until I fall asleep. I have asthma and I am very afraid now because it is definitely interfering with my breathing. I'm also using Ayr saline spray and Ayr gel (which I put in my nose at night). NOTHING IS WORKING. I wake up in a panic in the middle of the night sometimes, get up, get dressed with the intention of going to the hospital's ER, but then reality sets in, I get undressed, get back into bed and try to calm myself down. Going to the hospital is useless. They know nothing. I have now decided I am going to try a decongestant (even though I have high blood pressure and I am not supposed to) because I heard that it helps some people. My blood pressure is under control and I don't intend to use much, but I have to see if it will help. I cannot walk around 24/7 trying to hawk up or swallow phlegm; the fact that it is getting worse (and it definitely is) has to suggest that something else may be wrong. Please, has anyone had this experience and if so, do you have any suggestions as to what I can do. My symptoms don't see to be the same as most of you have, but believe me, I have been examined and told by several doctors that I do indeed have ENS and Atrophic Rhinitis. Unfortunately, they then tell me that there is nothing that can be done.
I went with my son to a doctor who was in the same building across the hall from the doctor who did my awful surgery. I went into his waiting room and proceeded to make a little speech about what this doctor had done to me (I had their attention too). I have Bells Palsy also and my face is a little crooked and paralyzed (which I think was bought on by the stress of trying to find out what was wrong with me), so that helped to get their attention. He sent his nurse out to the waiting room and asked me to please leave his office and stop harrassing his patients. I left quietly because I had no real intentions of doing anything, I just wanted people to know that this man has ruined my entire life. Right now, I am just afraid and I need some relief. So if anyone has anything to offer, please, you can e-mail me direct if you like at pvprice1@aol.com. I understand that the damage is done, I just don't understand that we can be told to just go away, there is nothing we can do for you. I am interviewing for my third job since this surgery. I need this job, and I think I have a good chance of getting it; I need to learn how to keep it. Please help.
Valerie
P.S. I'm awful sorry this is so long. I think I am venting.
I understand exactly how you feel, the pain and the urge to go somewhere for help but there is no help. The doctors have damaged us and there is no going back. Whenever I am in pain, I think about that doctor and all I want to do is to trim his turbinates out so he could feel the same pain, but I don't think that is a solution.
I am concentrating my energy to let others know about ENS and the malpractice (by lack of knowledge) that many ENT are still practicing, which include spreading articles/information about ENS (and other down side risk of nasal surgery etc), contacting the media (may be one of them will do a story one day if we all are all keep on shouting), visit other GP (doctors) to let them know who did the operation on you so referals to that ENT are minimised.
Secondly, I will find LEGITIMATE WAYS (we don't want to be sent to pychiatrist unit, do we) to make as many people know as possible about how I was misdiagnosed and treated by a very stupid practice i.e incision on healthy turbinates as standard procedure without even informed consent. I think it is not agaisnt the law to come to that doctor office, talk to the receptionist to make appointment. Then go to the office to make the cancellation. Hang around his clinics regularly to make yourself visible to other patients (Just before his opening hours to talk to other waiting patients).
Thirdly, it is costly but I am taking him to court. By putting on pressure, they will crack one day.
We still live for a purpose, may be it is to let the public aware of those unscrupulous medico and their dangerous surgical blades (even more deadly than the knife in the hand of the hooligan).
All of that sounds very good. I started to go the the doctor's office with a picket sign and just walk around for a while carrying it. But you know, I have to calm down a little because I have Bells Palsy and I have high blood pressure and getting too excited over the ENS is going to eventually kill me or give me a stroke; I hate that doctor with every sense of my being, but it just seems that no one in the world will listen to us and because they don't our families and such don't really believe we have a legitimate illness. They just think (my family does sometimes), that I am losing control.
Hi Winston,
We are all suffering from ENS, and none of us are quitting. There are many ways to live with the symptoms and ease them a bit although there is yet no permanent solution. You are young, and I suppose in good physical shape and only a month after the operation. If you keep your nose humid by using a lot of saline when ever you feel dry or out of breath, and practuce sleeping with a humidifier and douche your nose daily with a solution of salt and baking soda (1 teaspoon of each in 3/4 of a cup of lukewarm regular water with a 10cc syringe (remove the niddle) in each nostril, and naturally keep physicly fit, you will gradualy feel better - although not cured. And this is a regime you'll have to stick to.
I suggest you read all the information you can find about ENS and atrophic rhinitis on this site, and in other places - such as Dr. Houser's "Nose Board" site. You'll find that many of us a thinking about medical solutions to the problem, some more realistic some less, and if you study the subject you might be able to join this effort and help yourself and others to a permanent solution.
Some of us have taken legal action.
You have a lot to learn about helping yourself in this condition and I'm sure you have a lot to contribute to us all.
So hang in there and never despair.
Here's an optimistic thought: One of the best ways to make your nose feel better - is have a lot of sex. Always better with a steady partner, but works with oneself too...
Not yet, It's way to soon for that.
You have to allow your body some time to fulfill it's full natural potential of recovery. Probably not more then very little mucosa will renew itself but that might make you feel better. How much better? it differs, that is very individual.
You should also be under supervision of a very sympathetic and knowledgable ENT specialist (like Dr. Houser) who can monitor your condition and give you clinical advice.
In any case - don't leave the board, and check out the other board too.
Good luck.
Thanks for your reply, you are the few who understand how I feel now.
But, my nose is more empty than you all. No inferior turbinate and no adenoids.
I think about my only hope.
First, go to Cleverland for Dr. Houser, for an artificial IT. I know even he himself probably has not tried it yet. Then, go to Houston for narrowing my right nostril.
I don't know how much it might cost? 10000 bucks or more ?
I feel like crying so much. Usually ENS will become worse and worse. Now, I cannot stand for too long, profuse sweating, repeated infections, hard of breathing, no sense of smell.
I owed my father so much. He told me not to have the surgery. He is 70s. Now, I think I will kill myself soon. Because I don't reallly think i can get two of the surgeries. If I can get it, most of you already have it.
Please, please give me some relief before I end myself. If luckily, I will live three more years. I cannot tolerate myself. Do you remeber the Vanilla Sky?
Please do not do anything as drastic as suicide. I know exactly how you feel. I had my middle turbinate and inferiour turbinate removed. I believe also adenoids. Everything. I have nothing but a shell. I have suffered and continue to suffer so badly and have contemplated suicide many times. Also as many times as I've wanted to end the doctor's life who did this miserable thing to me. But it's not worth it. I will be dead and he will just go on living his life like nothing ever happened. I've had ENS now for 4 years. Been to several psychiatrists, been on many different medications; just plain thought I was losing my mind. I just recently went to an ENT I was referred to here in the Bronx . He ordered another cat scan and for me to bring my pathology and operative reports to my next visit (July 19th), so that he can see what really happened. Whether or not he can help me remains to be seen. I will find out tomorrow. I can say that in the last two or three weeks, I have had at least 6 days, consecutively, where my nose has felt absolutely normal. I cannot put my finger on why this is, I have done nothing different; just irrigating my nose and using Ayr nasal gel. That is all. Let's see what he has to tell me tomorrow. I will be glad to share. Hold on to your sanity if you can and continue visiting this forum and The Nose Board. We are all miserable but we learn things from one another. We have to, we are all each other has. Nothing else, other than perhaps Dr. Houser cares. Besides, if someone finds a cure and you commit hurry curry (lol) you will miss out on it. Good luck to you.
The purpose of this Message Board is to discuss and help answer any questions you have about dysfunctions of the Nose. This board was ceated for poeple with ENS, Arophic Rhinitis, people with damaged turbinate tissue from surgery, or anyone who has been devastated by their dysfunctional nose. Every once in a while I will add new links relating to ENS, or turbinate dysfunction.
Re(1): ENS
IP: 172.198.15.81
Posted on November 8, 2004 at 08:10:46 PM by I
ENS and Atrophic Rhinitis are basically the same thing. Empty Nose Syndrome is a term that came from when poeple who's ENT removed and damaged too much tissue. But Atrophic Rhinits has been well know thoughout our histury occuring from disease. These poeple that had it were know as social rejects with an unplesant smell comming from there nose. The symptoms are the same, they include: Nasal crusting, Widening nasal cavities, loss of smell, and lots of others.
Re(1): Welcome
IP: 205.188.116.136
Posted on November 6, 2004 at 11:31:49 AM by Valerie
I have atrophic rhinitis. I have extremely thick mucous that drains down the back of my throat 24/7. I had my middle turbinates and partial inferior turbinates removed 4 years ago and have been suffering since. If I could just find something to help stop the drainage of mucous, it would improve the quality of my life, of which there is none at the present time. Sometimes because of this, I have difficulty swallowing and it affects my breathing. Does anybody have any suggestions that would help me out with my problem. Thanks.
Welcome
IP: 205.188.116.11
Posted on November 9, 2004 at 11:59:36 PM by Flushface
Hello everybody,
My name is Flushface and I'm a nasaplegic. I've been nasally handicapped ever since my surgery that was supposed to be of benefit to me but was only beneficial to the butcher ENT!
Now my life is daily misery and perseverance and I have continual thoughts of suicide and revenge murder varying in intensity depending how my nose is behaving. I have been making small progress ( I think?) but I know my nose will never be normal again. Doctors should only do things that are designed to restore the nasal cavity's and sinus physiological state not resect and resect and bore holes and remove and ectomize everything. The medical system fools evrybody with the "Functional" baloney because it makes people dysfunctional and the ENT's don't seem to really understand that minimal means minimal and that the theory behind nasal surgery is that a very very very minor amount of tissue removed from the OMC (osteomeatalcomplex) then allows the sinuses to recover and the nose to function. Now we're all suffering because the ENT's thought they were some type of modern sculptor and remodeled our noses by mutilating the anatomy that gives the nose it's ability to function! These ENT's should not be operating on most of us because we all were probably not the worst case scenerio that sinus surgery should be reserved for. Now I'm a walking zombie with no enjoyment or hopes and dreams and live moment to moment wondering how to cope and having psychopathic thoughts. I mentioned a long time ago that I'm stuck in a surreal limbo where I want to die but I can't bring myself to kill myself and when I do really get serious intentions than I get so angry at the ENT that I think that he should die so I should kill him first and I can't bring myself to do that either because I am a very non-violent person and I still have a shred of hope that I might improve a little more each passing day/week/month/year etc... I have already been derailed and have not accomplished much in the last two years and the thought of growing old with this problem and the flushing and infections is almost as unbearable as the day to day discomfort and aggravation especially when an infection occurs and I am forced to blow and flush and flush and flush and medicate and nurse myself like a sickly person that does'nt have the natural ability to overcome a cold or virus because my nose does't work. The one thing I have gained from this hellish nightmare though is a great sympathy and respect for all of the people with physical ailments like the kidney patients that need dialysis and colostoy payients and imsulin dependant diabetic, and paraplegigics and all of the many cruel states of existence that many people are enduring while a healthy care free segment of society lives happily with no real concern about their bodies because it is taken for granted that they just eat and sleep and do the other normal daily things that most of us remember.
It might seem sick but now I have no concerns for a healthy diet and eat fatty foods and don't exercise because I have lost hope and maybe I will have a stroke or heart attack and die.
Sorry everybody I don't want to be so morbid and depress you all.
Re(1): Welcome
IP: 172.192.199.56
Posted on November 10, 2004 at 07:11:18 PM by Anonymous
I know what you mean. I have many suicidal thoughts (everyday). some days i'll feel a little better, but theres still that thing that never seems to go away, it haunts me. Sometimes I can't handle it and I have to make myself feel physical pain, this acually makes me feel better, for one brief instance I am distracted away from my nose. I don't know if this has ever happend to you, but there was one day where I felt about 90% better, for about thirty minutes. I was able to talk normally, and the front part of my nose with some resistance. I couldn't believe other poeple are like this everyday. I don't even know if the pain normal poeple feel(like hitting your head really hard, or being depressed)is actually suffering. The similar diseases that we have, its beyond pain, its beyond what poeple thnk of hell. And yet, since it doesn't hurt them when poeple are diseases and weak, they won't do anything to help them. They would just have to lower their quality of life barley and it could cause others to be cured. It could even actually higher their quality of life, once we were cured. I just know that I would never forget the people that suffer the most if I got better, and if I ever do I give any of you permission to kill me.(I'm as sure as a person can be that I won't) Comparred to suffering I don't even know if death is really a bad thing. Its just an end. Something most of us fear.
Re(2): Welcome
IP: 172.199.126.161
Posted on November 6, 2004 at 01:17:32 PM by I
Have you ever tried putting cotton in you nose to plug it up. this might help your nose hold more moisture and the mucus might become thinnner. of course this should only be temparary treatment. Where do you live. You should find an ENT who does reconstructive surgery, you might have to fly some where, but if you can get a doctor to give you a diagnosis, and maybe a suggested way to correct it, than they could either give you the surgery or, they could consult with an ENT in your local area, and advise them about the problem. If you go to a local drug store you can buy an over the counter midication called mucinex. it thins the mucus, but the only problem is that when you stop taking it, your mucus gets thicker for a couple days(rebound). I'm sure you've heard of saline(salt water) that helps. One other thing you could do is lay on a bed on your back and tip your head back at the edge, so that the top of your head is facing down. this makes all the mucus drain out and it helps for a couple hours.
I hope this will help
Re(3): Welcome
IP: 152.163.100.136
Posted on November 6, 2004 at 02:35:43 PM by Valerie
Everything you have suggested I have tried and more. You must realize that I have suffered from this for 4 long long years and have tried everything. The cotton did help for a while, but my symptoms got worse and it now makes it hard for me to breathe; also, I have the problem in both nostrils, I definitely can't plug up both nostrils. I do irrigations twice a day, sometimes once. It helps sometimes and other times it makes it worse. The doctors here in New York either want to play dumb, or really are. They take a look at my catscans and tell me everything is fine. I have had them looked at by the best and been told I have ENS. Also, when they were taken at a certain lab, I was told that it was the worse case of aggressive surgery they had ever seen. The other thing for me to do now is find a way to live with it. I am not ready to give up yet, but sometimes the depression can be very bad. Thanks for your help.
Re(4): Welcome
IP: 172.199.126.161
Posted on November 6, 2004 at 02:54:28 PM by I
did the ent's who said you have ENS recomend anything for you. Do you think making the size of the turbinates as close as the presurgical state would help you. This is what I am trying to do. I have a surgey day set to get alloderm implanted, i'll let you know how it goes. Hey, have you tried swelling your nose? It helps me. If you use afrin, it has a rebound effect, and it startes making your nose sutffier and more swollen. its call Rhinitis Medicamentosa and your body will cause more blood to fill in your turbinates, but this happens days after you use the afrin. I also get vitamin tablets, Vitamin A, and E, and put it directly in my nose. When I do this it feels like thier is more moisture, and better mucus flow, but you have to put a lot in your nose because when your apply vitamins this way you can only only obsorb a certain amount.
Re(5): Welcome
IP: 64.12.116.136
Posted on November 6, 2004 at 05:34:23 PM by Valerie
By the doctors who know what ENS is, I was told that there is nothing that can be done. I don't have anything left to aid in an implant. Everything was removed -- everything. What irks me is they send me away telling me, "I just have to learn to live with it". That is not an easy thing to do. Obviously they do not know this since they don't know very much about it. At this point, I have lost so much, the respect of my family -- they no longer believe anything is wrong with me; my relationship -- he stood through it all with me, he is tired now. I basically just don't care any more. To "I" and Alloderm Implants
IP: 207.161.201.33
Posted on November 9, 2004 at 10:47:15 AM by Devin
Hey "I' What turbinates were removed on you and you are having alloderm Implants, When? Let Me know as I am going to go to Dr. Houser and try it as well? Good Luck , also what turbinates are you having it put into?
peace
devin
Re(1): To
IP: 172.192.150.109
Posted on November 9, 2004 at 05:50:35 PM by I
I had turbinate reduction twice on both Inferiors. I have a surgery day set at the begenning of january with dr. Houser. But I want to try and see if a local ENT could give me the surgery sooner, its a simple procedure(he does reconstructive surgery on cancer patients). I'll let you know how it goes. I'm going to get it put in both turbinates, preferably in the front where the nasal valve is since this is mainly where the ENT removed and damaged the tissue.
To Anonymous
IP: 64.52.34.91
Posted on November 22, 2004 at 11:27:31 AM by anonymous2
Just curious, you said you get your thick mucus in the morning; does it feel as if you can't breathe also and you are EXTREMELY congested. I often have to literally jump out of the bed and somehow clear my nose, either by irrigating or with drops and then tissue paper. It is the worst thing to live with every day.
Re(1): To Anonymous
IP: 207.161.201.33
Posted on November 22, 2004 at 02:50:50 PM by Devon
Anonymous where are you from. what type of surgery did you have
Also "I" do you have voice problems?
How Much Alloderm are you getting put in and did insurance cover it?
I called and I am going to See Dr.Houser If he can put Alloderm in then great
What did he think when he saw you, did he say it woudl help and how many post op visits would you have to make?
I really wish you the best
Devon
Heart
IP: 205.188.117.8
Posted on November 12, 2004 at 01:34:36 PM by SalineQueen
Why does it feel like my heart is drying out. and i cant sleep on my left side, because of maybe low blood flow in that area.Sometimes i feel like im about to have a heartattack or some blood vessel in my brain is going to pop. does ens have a bad effect to the heart? I think so
Re(1): Heart
IP: 172.198.85.175
Posted on November 12, 2004 at 07:40:09 PM by Anthony
I've had heart problems. Thats interesting that you feel like this. After these surgeries it can really disrupt the way your body fuctions. Its almost like your body is in shock from the surgery, for years.
After my surgery my blood circulation was so bad. I couldn't breathe and I was always cold. from the inside.
You can take vitamins that help your heart/circulation/tissues like vitamin E, A, C, exersise, you could try geriforte tablets.
Do you drink enough water?
Hot and cold Showers or Hydrotherapy is a good way of improving your circulation. It is something you can do every day, concentrating on the effected area. When you get hot under a shower the blood rushes to the skin and feeds it. Then when you immediately put on the cold, the blood rushes to the internal organs. You shiver, but what is happening is that your blood is flushing out your skin and leaving it oxygenated. Then, again, a hot shower and the blood rushes from your internal organs, so flushing them, to your skin.
Your circulation is increased just by the action of your blood being forced rapidly around your body. This hot and then cold water can be repeated up to 5 or 6 times for optimum results. Do not start straight away on very hot or very cold water. Gradually increase the temperature difference between the hot and cold water over a period of a few weeks so that it is not too much of a shock to the system. This single action can dramatically improve your circulation over time.
Garlic can increase circulation.
ScaryStuff!
IP: 152.163.101.8
Posted on November 12, 2004 at 09:54:55 PM by SalineQueen
This is really scary stuff, and the tremendous stress this ENS **** is doing to are hearts and brains. HELLO , we are in big risks of heart attacks, strokes,Brain algorisms or whatever the hell you call it. we really need to draw big attention to this stuff. This link tells about turbinates function to prevent strokes http://www.Palmdigitalmedia.com/product/book/excerpt/17164
you have to scroll down to- The Turbinates: A Closer Look
Im really concerned and scared because it feels like something in my brain is about to pop. oh the agony
Reply to Saline Queen
IP: 64.12.116.136
Posted on November 13, 2004 at 07:33:00 AM by Valerie
I read your article. It is indeed very interesting. I'm not up on all this technical stuff, but I do know that since I have had ENS, I have been getting funny feelings in my head, brain, whatever (lol). What this is really attributed to, I don't know. I do know that eventually this thing is going to get the best of me. Reason: It has to; it is killing me slowly and there is no doctor (if you can believe that) that you can go to for help. Sad commentary.
thanks for the website
IP: 64.171.76.36
Posted on November 14, 2004 at 02:33:36 PM by WInston
From:Winston
I also hope that an organization for atrophic rhinitis can be set up soon. I hope I can help.
If you go to google, you will know that a tooth can be grown from stem cell. Also a whole nasal cavity.
In MIT, they can use stem cell to rebuild the bloodvessel.
In other words, if we can get enough attention, for example, being classied as disable security, so the gov can feel our pain too., then a new stem cell research can be on us. And, it is much easier to be solved compared to Parkinson's disease because all we need is to regraft the turbinate back to our body.
Of course, a good surgeon, like Dale Rice is needed too.
Please, I lost both my inferior turbinates and one middle turbinate and a perforation in my septum. I am so tired to do things. But, I will try. However, if you can do it. Please.
Or call me and encourage me 626 616 3519
Best
If pig's turbinate can be transplanted, I want it
IP: 64.171.76.36
Posted on November 14, 2004 at 02:47:39 PM by Winston
A biopharmaceutical company that helped produce Dolly the sheep has produced new pig clones.
PPL Therapeutics says the pigs, which lack a specific gene, are a major step towards using animal organs for human transplants.
The female piglets were born on Christmas Day in the United States .
This advance provides a near term solution for overcoming the shortage of human organs for transplants
David Ayares, PPL
They have been named Noel, Angel, Star, Joy and Mary.
These are not the first pig clones, but PPL, a commercial offshoot of the Roslin Institute in Scotland , says the pigs are the first to be engineered in a way that should help prevent their tissues being rejected by the human body.
The animals' biological make-up is slightly different from ordinary pigs.
'Near term' solution
A specific gene, which makes the human body reject pig organs, has been "knocked out".
PPL says that it intends to use the pigs as part of its programme to seek a cure for humans suffering from diabetes.
It raises serious ethical issues over the use of animals and a major question of safety
Dr Donald Bruce, Church of Scotland
Dr David Ayares, Vice-President of Research at PPL's US division said the birth of the pigs was a critical milestone in the company's xenograft programme.
"This advance provides a near-term solution for overcoming the shortage of human organs for transplants as well as insulin-producing cells to cure diabetes," Dr Ayares said in a statement.
The news was given a cautious welcome by the Society, Religion and Technology Project of the Church of Scotland.
Safety concerns
Dr Donald Bruce said the disabling of a gene that would otherwise cause the rejection of a pig organ by the human body might, potentially, be ethically acceptable in the context of xenotransplantation but only if a number of conditions were fulfilled.
Genetically altered pigs are now a reality
"The prospect of using pig organs to save many human lives, or to improve substantially the quality of life of dialysis patients or diabetics, is attractive from the viewpoint of human medicine," he said.
"But it raises serious ethical issues over the use of animals and a major question of safety." He added: "The fact that we already eat pigs is not a sufficient moral argument. This would be an entirely new way of relating to animals. Switching organs across species represents a different way of using animals from anything humans have done before."
PPL was the first to clone pigs in spring 2000. In April 2001, PPL said that it had produced gene-altered, or transgenic, pig clones.
The pigs had had a foreign gene added to the cells from which they were developed.
A month later an Australian company, BresaGen Ltd, said it had also produced a pig clone using a different technology.
Potential obstacles
Pigs are thought by some scientists to be the most suitable animals for providing organs for transplant into humans.
A pig's heart is about the same size as a human's and has about the same power output.
Furthermore, scientists think they understand the steps they need to take to genetically modify pig tissue so that it will not be rejected by the human immune system.
However, there are a number of major problems yet to be overcome. These include the theoretical risk that pig viruses might jump into humans and cause new diseases.
Sarah Kite, from the British Union for the Abolition of Vivisection, was critical of the development, saying that many animals were being put through horrific and pointless experiments.
"We believe this is yet further scientific hype because it is leading people to falsely believe that successful animal transplants are just around the corner," she told the BBC.
She said scientists still did not understand the rejection issue properly and added that there were major doubts over whether animal organs could sustain human life.
"The full potential for getting human donor organs has not yet been realised. We still haven't got an 'opt out' system in this country where humans are assumed to want their organs used for transplant after their death."
Suggestions
IP: 209.178.188.167
Posted on November 15, 2004 at 02:57:39 PM by K
1. Form an organization, fighting for disability security, researcher's attention, the debilitation of atrophic rhinitis, etc.
2. In UK , a company was formed to use stem cell to grow new teeth. The upper level teeth is the other side of the nasal cavity. If they can differentiate the stem cell to grow only the teeth, it shall also be able to be done to grow only the turbinate too.
Besdies, if enough study is taken to find out the map of bloodvessel on the cheek bone, maybe by digging a small hole beside our original turbinate and insert the specific turbinate cell into it, a whole new turbinate can grow. Some people have 4 inferior turbiantes since born.
3. The embryonic stem cell can do wonders on us because we don't need to use them to repair an organ, instead we need a new grown organ to reimplant. So, we will not have the risk of getting cancer.
3. I have fatigue all the time as most of you. I just wonder, can any of your spouses, children can help found an organization and start to correspond with Harverd, John Hopkins, and UCLA hospitals.
There is really hope for us. But, it is still in the theoretical stage.
Best
ENS letter
IP: 64.52.34.91
Posted on November 23, 2004 at 02:47:22 PM by Anonymous
I am writing a letter (yet another one) to the doctor who performed my surgery telling him a few facts about what I have been going through these past few years and enclosing pertinent information that I feel he should read before he attempts to do another operation like the one he performed on me (removing my middle turbinate and partial inferior). I'm sure it won't be worth a grain of salt, but I would like to know if anyone knows of somebody else I should send a copy of the letter to. I will not give up until I am dead, trying to make somebody aware of our plight. Any articles in reference to ENS (recent) would be helpful if anyone sees any on the web. Thanks.
Re(1): ENS letter
IP: 207.161.201.33
Posted on November 24, 2004 at 11:37:40 AM by Manny
what state did you have your surgery in.
I had my surgery in New York
IP: 64.52.34.91
Posted on November 24, 2004 at 01:23:42 PM by Anonymous
(no message)
Re(1): I had my surgery in New York
IP: 207.161.201.33
Posted on November 24, 2004 at 02:02:52 PM by Manny
well to Annoymous, FF, Valerie, tom, and others. it appears that ENS has resulted by doctors in New York . New York seems to be the Birthplace of ENS.
I believe their should be a forum and we discuss who were our doctors as i believe that we will show these doctors were probably going to the same place and taught by the same doctor
I think we should notify the American RHinological society of our dispair and see what they will do.
I have had enough of doctors not be named. i believe we should start a site and name them and see if they respond.
They should fix what they have done or explain or finiancial re-imburse us so we can try things like Dr.Houser suggests to see if that would help.
Re(2): I had my surgery in New York
IP: 81.76.17.136
Posted on December 5, 2004 at 02:48:24 PM by Anon
I agree - now that we are off Dr Houser's board I think we can do that (i.e name the doctors concerned).
Re(2): I had my surgery in New York
IP: 64.12.116.7
Posted on November 24, 2004 at 06:36:44 PM by Anonymous
I believe you are right. I am not in the least looking for a large sum for reimbursement. I just think it is fair that if something, anything, can be done to make my life a little better, it should be. I mean this doctor made a lot of money off of me for doing surgery and removing things in my nose that were never explained to me. I am going into my seventh year and I think you guys will believe me when I say I have suffered each and every day of those seven years. The problem is that the ENS is not getting any better. It is getting worse. It is making me want to give up on life, which I love and I don't have a #$%# idea what to do about it. Can someone help us. Tell us what to do?
Random Psychosis thoughts
IP: 64.12.117.8
Posted on December 1, 2004 at 07:15:58 AM by Anonymous
I am living the hard-knocks life, never thought I would have to.
I am walking on a tight rope, never thought I would have to either.
Im not in the military, but it sure feels like I am, nah maybe it's just some horror boot camp.
That ****** Ent made me some holloween pumkin! What a carver, Son of a *****.
Im clean cut, LOL!
I bet I can make it to the guiness book of world record for holding my breath the longest, because im so adapted to it.
Anyone else feel free to add on to this, I don't mean to depress anyone I just need to vent.
Re(1): Random Psychosis thoughts
IP: 172.154.143.110
Posted on December 4, 2004 at 04:22:29 PM by
WHY DID HE DO THIS. i RATHER HIM HAVE KILLED ME. NOW I MIGHT HAVE TO DO IT BECUASE OF THEM. BUT IM TO WEAK AND CONSCIOUS TO DO IT. SO OVERWELMED WITH THIS CONTINUOS CYCLE OF SUFFERING, AND NOT BEING ABLE TO DO ANYTHING ABOUT IT. TIME PASSING IS MY ONLY FRIEND. BECAUSE IT WILL SOON BE OVER, WETHER ITS A CURE, OR DEATH.
No one cares
IP: 172.134.31.194
Posted on December 7, 2004 at 11:47:56 PM by Anonymous
No one cares about poeple that suffer the most. They think dying is the worst thing, but yet, most of us can only hope for death. Why don't poeple care? They might as well crucify us. Why? Hardley any one is like this. Most poeple are just tools, with all thiere pleasure. God, I hope everyone suffering as much as us gets healed. We need to evolve into a species that is so connected to all life(anything conscious), that w'ell feel thier suffering. that way no one would suffer that much. Poeple always say "im sorry I don't want to depress you" but things like this are not really suffering to me, it just makes you avoid them, or run away from them. I use to think I suffered before my surgery. I think the surgery changed my consciousness, now I have one one with no defense against suffering. Everyone around me treats me like a dysfunctional worthless disease. I don't even care if I have a sociaol life anymore, I just want my nose to be better. filled with tissue, and thin mucus. I'll be medatating and praying for all of you. I'm sorry you've been abandoned like this...
Tissue
IP: 152.163.101.8
Posted on November 19, 2004 at 07:31:27 PM by Y
What's the least amount of turbinate tissue one can have to be able to get an injection of alloderm or fat?
Thanks.
Herbal medicines
IP: 152.163.101.8
Posted on November 21, 2004 at 09:59:29 PM by Anonymous
Are there any herbal medicines that could help the blood flow to the turbinates or any homeopathic medicines?
Re(1): Herbal medicines
IP: 172.198.208.4
Posted on November 23, 2004 at 09:59:33 AM by I
Vitamins
IP: 152.163.101.8
Posted on December 12, 2004 at 08:08:10 PM by anonymous
Which one is better taking Vitamin A and E orally or directly in the nose in oil form? Also when someone gets their turbinates removed, and only little is left, wouldnt that little still have the same blood supply as before the surgery. Does the Blood supply change. And wouldnt that blood cuase some growth becuase of the pressure pushing against small tissue that is left?
Re(1): Vitamins
IP: 172.155.19.97
Posted on December 14, 2004 at 11:58:33 PM by I
I doubt the tissue would actually ever grow back. The remaining tissue could hypertrophy though due to allergies, or enough blood pressue. This means that the turbinates would get bigger, and would hold more blood. I believe that talking vitamin A or D is best and is most effective when put directly in the nose. Some how it causes the nose to be less dry with more mucus. There are the sprays, you could take the soft gels oraly, or put it directly in your nose. Ive tried this and it helps.
Re(2): Cold
IP: 64.12.116.136
Posted on January 10, 2005 at 12:16:03 PM by anonymous
I have more trouble breathing at night than during the waking hours, I have no idea why. Its very hard for me to sleep because of this, and this is the reason my life is going downhill, the lack of sleep at night. Its a nightmare litarlly. When I sneeze I feel like my nose is functioning and I can breathe better during those seconds, but it lasts for only so long.
Re(1): Cold
IP: 172.155.19.97
Posted on December 14, 2004 at 11:51:31 PM by a
I agree, I actually prefer to have an infection though, because it really makes my nose swollen.
Injections
IP: 152.163.101.8
Posted on December 9, 2004 at 04:04:23 PM by anonymous
Is there anywhere else in the nose aloderm injections or fat injections can be done to dramaticaly improve moisture and humidity. And Could that help produce more mucus? Thanks
Re(1): Injections
IP: 172.139.137.115
Posted on December 9, 2004 at 10:41:15 PM by I
Alloderm implants. It won't actually help produce mucus, but the nose will have much more moisture. Imagine If you kept you mouth wid open all day. It would get pretty dry. Thats kind of what aer noses are like. So the mucus should be less thick also. Its not just the damaged mucusa that makes the nose dry its also the airflow.
Protein
IP: 152.163.101.8
Posted on December 9, 2004 at 04:01:27 PM by anonymous
There has to be something to help some tissue growth in the turbinates. Even if it is mucus tissues its all part of the body. I believe mother nature knows how to fix or heal what was mutilated. But we have to search what is out there.
Doesnt Protein (amino acids) help rebuild tissue, if not alot, some to the turbinates? I think i need to start taking protein bars or shakes. any ideas?
Re(1): Protein
IP: 66.97.93.225
Posted on December 28, 2004 at 05:54:10 PM by Shane
Anonymous,
You are definitely right, Protein-amino acids definitely help...over a period of time...I have been experimenting with this for a while and can say that it helps, I would use Protein supplements that don't have any known allergens such as Rice Protein...Soy(Gluten),and Whey are known to have Allergens,... but that is just my opinion, if they work for you great....also make sure they have the complete amino acid profile. I talked to a nutritionists over a year ago and they started me out on Whey Protein, well I found out with my blood type that I should stay away from Dairy Products(Whey's a form of dairy)....Also look into Whole Food Supplements such as Standard Process. Whole Foods are very important in that our body has not been able to assimilate the nutrients from our food since this surgery, we need the adequate vitamins, minerals, enzymes and amino acids for our body to start the repair/rebuild process. There are tests that can be performed to see if you are nutrient deficient such as muscle tests, urinalisis,and even hair samples that would be able to tell you if you are nutrient deficient and I'm sure that you would come up with some problems, certain Chiropractors, Naturopaths, and Nutritionists do these tests, maybe others as well. I wish I'd already done this but I haven't taken the time to save up the money to do these tests.
Sorry this was a little long winded but I'm glad to hear you are looking into this. GOD Bless
Re(2): My surgery is in 2 days
IP: 172.139.15.141
Posted on January 9, 2005 at 08:49:35 PM by I
My history is this. I started out with a very stuffy nose. alerrgic Rhinitis is what caused it. I had very large IF turbinates, and I saw an ENT-dr.Fiber(please stay away from this man). He said he would trim the nasal tissue and every thing would be open and good. I'm still not sure exactly what he did. I believe he used a laser to reduce the IF turbinates and he also reduced the middle turbinates. 6 months later, all the symptoms slowly crept up on me. The symptoms are
-Suffucation
-crusting, thick mucus
-nose feels to open at front
-nose feels more congestion at the back and not enough at the front
-post nasal drainage
-talking problems
-bad sence of smell
The information contained on this site reflects our personal non-professional opinions only, and is in no way intended to replace the knowledge or diagnosis of your doctor. For specific guidance regarding personal health questions, we advise consultation with a qualified health care professional familiar with your particular circumstances.
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