warpedtrekker
@warpedtrekker
@warpedtrekker
Posts: 26
Joined: Nov 20, 2018
Vivaer nasal valve remodeling and Empty Nose Syndrome?
@123d-did the ENT diagnose you with ENS? Did he tell you which areas were removed? Can you explain your symptoms?
The ent diagnosed it not the one that did it . He said and showed me the picture of the cat scan I started to cry there is nothing there he wouldn’t be able to repair cause there’s nothing to work with left. It affected my right ear which I have tube in now. Cant breathe, headache, dry nose can’t blow my nose or smell lots of pain can’t sleep
nrd1
@nrd1
@nrd1
Posts: 115
Joined: May 07, 2019
The ent diagnosed it not the one that did it . He said and showed me the picture of the cat scan I started to cry there is nothing there he wouldn’t be able to repair cause there’s nothing to work with left. It affected my right ear which I have tube in now. Cant breathe, headache, dry nose can’t blow my nose or smell lots of pain can’t sleep
@123d-I am so sorry you are experiencing this. These are the typical symptoms of it. The only reason I am on this site is due to this. It is very common in the ENT world. They are surgeons, first and foremost. On my journey I have learned that ENTs have very little understanding of how the nose functions and that the inside of the nose is an entire organ system.
There are 2 ENTs in the country who are kind enough to acknowledge this is an issue. I am not sure where you are located, but one is at Stanford and one is in Ohio. Moisture and humidification is recommended. Try to retain as much moisture as you can in your nose. Try to find someone who is understanding and compassionate towards the condition.
Acupuncture for the headaches.
There are many different reasons for the pain. Most of the the pain is Neuropathic, so that’s why NSAIDS do not work.
Did you sign a detailed consent?
@123d-I am so sorry you are experiencing this. These are the typical symptoms of it. The only reason I am on this site is due to this. It is very common in the ENT world. They are surgeons, first and foremost. On my journey I have learned that ENTs have very little understanding of how the nose functions and that the inside of the nose is an entire organ system.
There are 2 ENTs in the country who are kind enough to acknowledge this is an issue. I am not sure where you are located, but one is at Stanford and one is in Ohio. Moisture and humidification is recommended. Try to retain as much moisture as you can in your nose. Try to find someone who is understanding and compassionate towards the condition.
Acupuncture for the headaches.
There are many different reasons for the pain. Most of the the pain is Neuropathic, so that’s why NSAIDS do not work.
Did you sign a detailed consent?
No I was never told this before the surgery or after the surgery by the one that did this. What is wrong with your nose
@jamienolson , I live in san diego ca. I have seen 3 ent specialists and one mentioned I had dry sinuses(which I fear could be a symptom of the turbinate reduction 4 years ago. And also a very bothersome post nasal drip sensation(as if you went for a run and have mucus in your throat feeling) fortunatley its not green or yellow but more of a sticky clear white. I was cleared of any major pollen type allergies or pet allergies. My symptom of suffucation (hard to sense inhale) seem more under very humid hot conditions and very cold dry conditions/high altitudes. I am also having issues doing physical labor or even power walking due to feeling breathless. The surgery was also very conservative and still have a 3 sets of turbinates. I have been to the Er and seen various doctors and it apears my 02 lvls seem fine and have had ct scans and chest lungs xrayed and everything apears normal… Yet im still feeling these distressing symptoms. Any other suggestions would be appreciated.
I live in Vista (North San Diego). My son had a doctor reduce his turbinates during jaw surgery. He has Empty Nose Syndrome. What you describe sounds like ENS. We wasted a lot of time on cardiologists, pulmonology, etc. I am not medical professional so this is disclaimer re medical advice. But it has been 2 years of hell since jaw surgeon cut his turbinates. He gets episodes of suffocation and breathlessness, extremely dry nose, sore throat from air rushing into throat and not being warmed by turbs, cough from air not being conditioned and warmed prior to entering lungs. ENS due to cutting off the inferior turbinates (my son had heads, tails, and bottoms cut off by surgeon who said he would not touch them). There is an Empty Nose Forum on facebook. Try to find them. Some had rib implanted into remaining turbinate remnant to enlarge them and slow air flow (main doctor who does it is in Italy-Dr. Piazza-3 year wait and no travel now with Covid). The shortness of breath and suffocation in my son's case are because turbinates/nerves damaged and brain can't sense air flowing in. ENT doctors cover up for jaw surgeon and each other. My son has seen the U.S. doctors (Dr. Subinoy Das in Ohio does stem cell therapy-didn't work; Dr. Jakar Nayak in Stanford (he may not still be doing implants but he may inject a solution that creates volume so you can tell if implants would help). Dr. Steven Houser is pioneer who discovered cause of ENS and moderates the ENS forum (believe has suspended the alloderm implants he was doing). It has to do with airflow and turbinates not sensing airflow. Also, turbinates may grow back somewhat but may also atrophy. Try to find the Empty Nose Forum on Facebook. The people there have suffered a long time and are best source of info. Some report feeling better in humid environments. We wasted a lot of time and money on pulmonology & cardiology experts who found nothing wrong. Find Empty Nose Forum. They are all praying for advances in stem cells or organ regrowth/transplant. My son has almost fainted on several occasions when the suffocation comes on.
Has anyone had symptoms after turbinate reduction surgery that despite having clear nasal passages included feelings of nasal obstruction, dry empty air, not being able to take and feel a deep breath, a sensation of being unable to breathe with nasal and facial pain, an inability to fall and stay asleep and being jolted awake due to lack of airflow, and being constantly distracted by a sense that you are not getting enough air? Have you been treated for this condition and found relief and if so, by whom and what was done to correct the problem? I am in a constant state of hell and need help!
Not a medical professional -disclaimer. Sounds like you have Empty Nose Syndrome (ENS) caused by turbinates being cut off. Go to Facebook Empty Nose Forum. My son has this nightmare condition. The dry, crusting, painful nasal mucosa, lack of sleep, and suffocation are all what he has, plus sore throat and cough from air not being warmed and conditions. Panic attacks from lack of oxygen (yet oxygen tests always register fine). Sorry this has happened to you. We are in San Diego. May help to find others who live near you.
nrd1
@nrd1
@nrd1
Posts: 115
Joined: May 07, 2019
Not a medical professional -disclaimer. Sounds like you have Empty Nose Syndrome (ENS) caused by turbinates being cut off. Go to Facebook Empty Nose Forum. My son has this nightmare condition. The dry, crusting, painful nasal mucosa, lack of sleep, and suffocation are all what he has, plus sore throat and cough from air not being warmed and conditions. Panic attacks from lack of oxygen (yet oxygen tests always register fine). Sorry this has happened to you. We are in San Diego. May help to find others who live near you.
@marychickadee– Hi. Can you tell me if your son also had headaches? And how is his mental health? I have tried to stay away from the forums actually, some sound hopeless with too much negativity.
Hi group I’m suffering from empty nose syndrome has anyone had any relief from this syndrome
My son has ENS since jaw surgeon cut his turbinates. Facebook has Empty Nose Forum which may comfort you to talk with other who are suffering and a few have suggestions of personal products they tried. My son has extremely dry nose that crusts and never really heals and stings and hurts (doctor cut turbinates out with scissors then burnt them – after promising not to touch them (obviously it was not a Mayo doctor), episodes of suffocation, severe insomnia (sleeps in short patches), anxiety, sore throat from cold dry air hitting back of throat, cough from lungs getting dry, unfiltered and unconditioned cold air, can't sense air flow. We are in San Diego. My son has had stemcell therapy with Dr. Subinoy Das in Ohio (failed), has been to Italy to see Dr. Fabio Piazza who does rib implants (3 year wait and complicated since jaw surgeon punched hole in lateral nasal wall to sinus), been to see Dr. Jakar Nayak at Stanford (not sure if he still does implants but he may give injections to "beef up" turbinates and create air resistance). We are concluding that there is no real treatment available other than someday stem cells or regeneration of mucosa – all far in future. One person on the Facebook site takes cotton make-up pads, cuts them, then rolls them up and puts in nose and it seems to produce some moisture and slow air rushing through. Sorry for what has happened to you. My son will never be the same. It has forever changed our once happy family..
@marychickadee– Hi. Can you tell me if your son also had headaches? And how is his mental health? I have tried to stay away from the forums actually, some sound hopeless with too much negativity.
No headaches. But severe issues with inability to sleep, anxiety, depression. Has not worked since this happened due to depression and fixation on nose. Doctors don't recognize it as being as serious as it is. Saw Dr. Das in Ohio but stem cells didn't work. Dr. Jakar Nayak Stanford will use (hyaluronic acid?) which swells the tissue slowing air flow – he calls it "speed bumps" they last about 3 months. There has to be a turbinate remnant left to do implant. Dr. Nayak is the only one I know of who does those. Not sure cause of headaches but some have mentioned accupuncture working.
nrd1
@nrd1
@nrd1
Posts: 115
Joined: May 07, 2019
@marychickadee-thank you it sounds like you have learned quite a bit. Do you mind if I private message you for questions?
Hello group!
I have been expiriencing some very odd symptoms and will try to keep it condensed. In 2014 I had a turbinate reduction(no turbinates were completely removed thankfully) and a septoplasty due to my constant stuffyness and smothered feeling upon waking up. About two years go by and my stuffiness apears the same and also noticing that I feel much more winded when doing activities. Fast forward to july 2018 and I had my first ever anxiety/panic attack. When this occured I felt numbness in certain parts of my body which most of these symptoms are gone. The most notable symptoms that still carry on are these episodes of breathlessness upon simple exertion such as walking/moving fast paced, moving objects over 10 lbs, or pushing my laundry basket, going from low to high altitudes. Also speaking more then a minute causes a pressure breathlessness sensation near my pharynx.It is to the point where I had to leave my job due to the distressing feeling of passing out or running out of breath. I was cleared of any lung or asthma problems and heart apeared healthy from the tests and ct scans done.I am also relatively healthy and try to eat as clean as possible, bit have left out cardio due to my concerns. Ive seen 3 ent specialists and have cleared me of anything out of the ordinary.
What I am wondering is if by any chance a side effect from the turbinate surgery 4 years back could have altered any inhale signaling to the brain or nervous system. I know this could be over thinking but I have been expiriencing several symptoms related to ENS syndrome or empty nose syndrome which correlates to sensations of breathlessness, dry nose(as I have most of the time) and intermittent loss of sensation of air when inhaling through nose(usually when its too hot/humid or too cold). Again these symptoms all seemed to have come after my apparent anxiety attack and Still scratching my head in the sense if these symptoms are anxiety induced or complications of the surgery which I did not feel anything unsual until recent other than dryness and post nasal drip feeling since then.
Any suggestions or input would be
Greatly appreciated!
I’m so sorry to hear you are going through this also I read it gets worse over time after my surgery I was never told that he emptied out my nose left nothing to even rebuild on very depressing. Hope you are able to get some relief
@123d
I had an endoscopy by ENT dr and neuro surgeon b9 tumor the size of a pea on my right optic nerve in stead of getting my head cut they went through my nose. After surgery I went to my follow up appointments ent said it takes time because I was having awful symptoms finally I went to another ent he ordered cat scan that’s when I found out from the surgery ens he couldn’t believe they completely took everything out of my nose . Plus I have other compilations due to it