Subglottic stenosis...

[aut4315]

I've had an excess of mucus in my throat for the past two years.  I have felt like I can't get enough air and get winded easily. The last 6 months, I've started coughing it up (yuck). I went to several ENT and came up with nothing. They tried to give me acid reflux medicine, inhalers, allergy medicine, and even speech therapy to help with my breathing.  Finally, I went to a new dr. She did a laryngoscopy on me and found out I had subglottic stenosis (narrowing of the throat). What's the surgery like and how long is the recovery?



This discussion is related to Excessive Thick Mucous in Throat-- HELP!!!.

[flmngjn718]

I have had #4 surgery in May of 2013, another balloon dilation. All of which have had steriod injections. Everyone is different, and what works for one person might not be the same for the next. Dr's all just guess and hope it all works out........

[becho]

I also went to Dr. Lorenz....love that man!!!! He is so knowledgable and sincere to his patients....how long after the first did you start to get symptoms again?  I had my first surgery a year ago and was just curious...I don't feel anything but then again the first time I really didn't except my co-workers pushed me into seeing someone...

[chrysti47]

let us know how it works

[chrysti47]

let us know how it works

[Kef1975]

Dr. Robert Lorenz from The Cleveland Clinic is a pioneer  in the field of subglottic stenosis.  He says the most important part of the dilation surgery is the use of steroid injections at the site of the narrowing to prevent the stenosis from returning, as the dilation alone is only temporary.  People come from all over the USA to receive his latest and greatest techniques.  You should google him.  I am his patient and getting ready to have my second surgery.  He is an amazing surgeon and specializes in subglottic stenosis.  
http://my.clevelandclinic.org/staff_directory/staff_display.aspx?doctorid=4447

[Lace7732]

I am going on my 4th surgery for my subglotic stenosis. They have all been temporary stretching and it closes back up within 2 months. I have only been doing the temporary stretch b/c I was pregnant when I was diagnosed with this...so all my surgerys were while I was pregnant. It was so hard to breath! Now that I had the baby they want to do a permant tracheal resection surgery. They basically cut out the piece that keeps closing up and resection your airways back together. This is a major surgery & requires about a week in icu. I was told by my dr that this surgery has a 90% success rate. I'm very nervous about thism major operation but if this fixes the problem it will be well worth it. I am only 32 & an athlete. I never had any breathing issues in my life this all came on within last year and since then I have barEly been able to walk for exercise b/c I struggle for air! It's  a scary feeling. I Am seeing dr. Grist at Emory in Atlanta and was told people come from all over country to get this procedure done by him. He has been studying this rare condition we have for over 12 years. I suggest you all see him! I'm blessed to have a great Dr at least!

[marie111409]

Hope your 3rd surgery went well. Know what you mean about the heartburn. I never had it in my life till after I had my 7th operation.

My subglottic stenosis was caused by scarring following a bug. I had it for about five years before I could convince the medical profession anything was wrong. I was told I just needed to learn how to breathe properly.

Eventually, I was so bad I could hardly walk and insisted on seeing a specialist. Even then it was difficult to get referred. I was gasping every breath, and the doctor told me to stop doing that!  It was only because my heart was racing that he gave in and referred me to a heart specialist!!

The heart specialist was wonderful and said he just wanted to make sure there was no narrowing anywhere. Had me scanned next day (usually takes months in the UK); but by the time I had my first surgery, my airway was 3.75 mm.  Think the adult is between 17 and 20-something mm, depending on your gender and size.

I am still quite annoyed at not having been taken seriously at the start. It could have prevented my scarring reaching such a bad stage. I'm now waiting for my 10th surgery. The highest airway they have been able to give me is 8.5 mm, which narrows again quite soon.  Been down to lower than the 3.75 at one point. But I'm told having the surgeries is preventing me losing my voice.

I find most stressful the time it takes to get my surgery. The hospital keeps forgetting about me or keeping me waiting way too long. I've been in intensive care because of the delay, and I've never been able to take my four year old dog for a proper walk .

Also I feel like a bit of a guinea pig at times. My surgeon was looking down with the camera one day. I think he was trying to train a pupil. He did something that blocked off my air altogether. I couldn't breath in or out. He said, "That's what happens when you annoy the vocal chords: they slam shut."  Then he moved the camera and said, "Sorry" to me. I knew he did it deliberately and have never had the same confidence in him. He was looking at my notes after the 8th operation and casually told me that sometimes these operations cause more scarring. He didn't even look up when he said it. Hardly inspires trust.

A lot of the time I feel between two worlds, this one and the next.

But I am so glad others are having a better experience. And my message to all is don't listen to your doctor if you know something is wrong. See a specialist before things get so bad there's no coming back from it.

[kimalison]

my doctor said if you feel ok then you ususally are ok. so i am stop worring about fluid at the bottom of the outside of lungs and carry on trying to eat healthy and exercise i have had all the tests and no cancer so i am going to leave well alone.  the lung doctor said it is a mystery but them beings doctors like to get to the bottom of things. at 69 you are going to get a few aches and pains. i am just saying that sometimes you have to be your own doctor. the doctor wanted to take a bit of the bottom of the lung just to have a look but because i am well for my aged he will leave things alone. going back in three months time and hope fluid clears up.  I will try to live normal life as you say its the worry that get u down,  but lucky to feel ok.

[LTupman]

I have had aquired subglottic stenosis due to prolonged endotracheal intubation, for 15 years and not recieved any treatment for 13 years.
I was involved in a serious road traffic acident when I was 9 years old. The fitted an adult sized Trachea and eventually a child sized Trachea.
The Trachea was removed atleast 18 months later.
I was suppose to have surgery to widen my wind pipe. The surgeon was suppose to remove a part of my rib and lodge it where the narrowing is, but that never happened.
After a while I got use to frequent chest infections, tonsilitus and difficulties breathing.

Subglottic Stenosis doesn't stop you from living a normal life, apparently I'm fit enough to work despite the problems I have with subglottic stenosis.
Don't worry too much about it its not the end of the world.

If you have any comments or questions then I'll do the best I can to help/answer anything you'd like to say

[flmngjn718]

Welcome to my world! I am going in for my 3rd surgery for subglottic stenosis this month(since 2006).  A couple of years before my first surgery, I had symptoms of asthma, "what is wrong with me?", I kept thinking. I'd went to pulmonologist, allergist, you name it. Finally a SMART lung dr, figured out I had blockage in my throat, sent me to a specialist ENT in Madison, Wi. and I had my first surgery due to subglottic stenosis and probably related to acid refulx. I was really bad the first time, barely could do anything. Surely you've went online and seen pictures and pictures from the dr's office if they stuck the tube down  your throat they will show you visions of your throat and how closed up it's getting??? Yes, been there, done that and it's getting old and annoying.  So, I'm going in for #3 in a couple weeks. The first surgery was laser, outpatient, sore throat a couple days, and your somewhat back to normal. Mine too was supposedly related to acid reflux, HOWEVER, I rarely have symptoms of this heartburn they speak of so I've been untrusting that it's truly this reason. I'm now on and have been 40 mg Priolosec 2x day. Not sure it's working but I'd think with all these drugs I wouldn't keep getting blockage. To say the least, I'm going to see a gastroenterologist after my surgery to see if he will do an endoscopy and determine how acidic/damaged my esophagus(if anything).  For the most part I don't feel much for heartburn.  

The second surgery was balloon, about 3 days or so and a sore throat, put an ice pack on, outpatient. There is no incision, it's all outpatient.  There are invasive surgeries for this type of problem, however, my specialist said there is no guarantee they will work any better and the recovery is much longer.  This 3rd surgery I'm chosing balloon again, it'll be a little larger this time 18mm instead of 14mm(for what that's worth I don't know making the hole larger and hopefully last longer).  

Not sure that helped all that much but that's what I've been through so far. I wish my surgery would at least last longer than a year and up to 5 years. Everyone is different and the surgery you have, might last longer. You can shoot me an email if you want to discuss anything more or if I can help in anyway. I, too, am still looking for answers.

Take Care