Idiopathic Subglottic Stenosis- Tracheal Stenosis

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Catana
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Date Joined Jan 2013
Total Posts : 10
   Posted 5/29/2013 6:56 PM (GMT -6)   
I just had a tracheal resection 4 weeks ago to hopefully cure this condition. Prior to that I had 3 tracheal dilatations. 95% of people with this are women. Idiopathic subglottic stenosis (ISS) is narrowing of the upper airway caused by inflammation and scar tissue, due to an unknown cause.

Idiopathic means that something has an unknown cause. Subglottic refers to the area of the airway that is narrowed (under the vocal cords, or ‘glottis'). Stenosis means a narrowing. ISS is a rare condition. Around 5% of cases of upper airway narrowing (subglottic stenosis) are due to an unknown cause (Idiopathic). ISS occurs almost exclusively in women, with only a small number of cases reported in men. It usually occurs between 30-50 years of age, but has been known to occur in a population ranging from children to individuals in their eighties.

If you are a woman and have been diagnosed with asthma but do not have any improvement in your condition only slowly getting worse you need to see a doctor. This is a serious condition and rare so most GP's don't recognize it. You need to see a Pulmonologist and have him do a bronch! It can be easily diagnosed this way. People with this condition often say or are told that they sound like Darth Vader when they breath. Two times my trachea narrowed to 3mm. It is very dangerous I was misdiagnosed with asthma for 10 years. You can die from mucus plugs when you trachea narrows that much! See a doctor if you suspect this.

If you get a positive diagnosis then see about joining our support page on Facebook. It is a closed group so get your diagnosis first.

https://www.facebook.com/groups/2409372782/

TheSiXness
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Date Joined May 2012
Total Posts : 525
   Posted 5/29/2013 7:13 PM (GMT -6)   
I have this because of my LPR... Most doctors I've been to just don't understand this and they don't know what to do.
-TheSixness-

Fighting daily pain from gastroparesis, gerd and lpr!
Had the TIF done 2/2012 and still am symptomatic.

Catana
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Date Joined Jan 2013
Total Posts : 10
   Posted 5/29/2013 8:00 PM (GMT -6)   
Sixness can you go see a specialist and and let them look down your throat to see what is going on! It is the only way to know for sure.

andreag9
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Date Joined May 2013
Total Posts : 3
   Posted 5/29/2013 9:47 PM (GMT -6)   
I have idiopathic subglottic stenosis as well. I have been properly diagnosed with this since I was 9 years old. I was misdiagnosed with asthma for 2 years and I was whistling when breathing because my trachea got so narrow. I am now 17 years old and have been through 10+ laser dilations and balloon dilations. I have had a nissen fundoplication as well. My last option is to have a resectioning surgery. My trachea will stretch no more without rupturing. What makes my case a little stranger than most is my stenosis is in 2 different places in my trachea. There is a possibility that the stenosis will come back after the resectioning or start in a different location. I am nervous for the surgery but would love some positive feedback or information on it. Thank you!

TheSiXness
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Date Joined May 2012
Total Posts : 525
   Posted 5/29/2013 10:18 PM (GMT -6)   
I'm going to an ENT on friday, will they be able to accurately diagnose me? That's where I was sent to after I went to urgent care. Or do I have to go to a pulmonologist to officially get diagnosed?
-TheSixness-

Fighting daily pain from gastroparesis, gerd and lpr!
Had the TIF done 2/2012 and still am symptomatic.

Catana
New Member


Date Joined Jan 2013
Total Posts : 10
   Posted 5/29/2013 10:40 PM (GMT -6)   
An ENT will be able to know what to do! You should be in good hands! Hope all goes well and you can find a diagnosis! Tell me how you made out after!

TheSiXness
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Date Joined May 2012
Total Posts : 525
   Posted 5/29/2013 11:03 PM (GMT -6)   
Ok, I'll letcha know.
-TheSixness-

Fighting daily pain from gastroparesis, gerd and lpr!
Had the TIF done 2/2012 and still am symptomatic.

DOGGBONES
Veteran Member


Date Joined Apr 2012
Total Posts : 706
   Posted 5/30/2013 6:01 AM (GMT -6)   
andreag,
Wow, thats alot to go through at such a young age! Stay strong and I will pray you see improvement.
 
To others, I believe my mother may have gone through these issues.

Catana
New Member


Date Joined Jan 2013
Total Posts : 10
   Posted 5/30/2013 8:09 AM (GMT -6)   
andreag yes you are young to have gone through so much! There are a few girls in the support group who are in their early twenties and other have stenosis that are in more than one place. The truth is this is a very rare disease. There are experimental drug therapies that are being developed now that are keeping the trachea open for longer periods of time! So if you have a case that is more complicated they can offer hope!

Catana
New Member


Date Joined Jan 2013
Total Posts : 10
   Posted 5/30/2013 6:40 PM (GMT -6)   
Symptoms of Subglottic or Tracheal Stenosis

The symptoms can develop very slowly and gradually. Many times, these symptoms are mistaken for other disorders such as asthma. This causes a delay in getting a correct diagnosis and treatment. A person might have some or all of these symptoms.

Coughing- chronic
Difficulty breathing
Labored breathing- especially difficult to exercise or climb stairs
Stridor- when breathing in due to blockage of the voice box or throat
Shortness of breath
Frequent inflammation of the lungs or recurrent respiratory infections
Cyanosis-(bluish color of the skin) around the mucous membrane of the mouth or nose
Fatigue
Wheezing- (sounds like Darth Vader)
Asthma that is difficult to treat

gerd_hater
Regular Member


Date Joined Oct 2012
Total Posts : 321
   Posted 5/30/2013 10:43 PM (GMT -6)   
As someone who has serious breathing problems and diagnosed sleep apnea despite Linx - this information is useful. Thanks for sharing !

Should the stenosis be diagnosable by an ENT ? I've seen a couple of them and neither mentioned anything wrong with my airways but I still can't breathe. My lung capacity is down on the Pulmonary Function Tests.

Any info is super useful.

Thanks!
GH

Catana
New Member


Date Joined Jan 2013
Total Posts : 10
   Posted 5/31/2013 5:43 AM (GMT -6)   
A lot of us have or have had serious problems with Gerd/Acid Reflux It does not cause this condition but often goes along with having it. Gerd_hater has your ENT ever done a scope? A scope through the nose/ local freezing or a broncoscopy done under sedation will let them see what is going on. A CAT-Scan will also show it up or a x-ray but they have to pay attention to the subglottic region because I have heard of it being missed on a regular x-ray by an untrained eye.

gerd_hater
Regular Member


Date Joined Oct 2012
Total Posts : 321
   Posted 5/31/2013 7:06 AM (GMT -6)   
I have had the scopes and CAT scan as well. No one ever mentioned anything. Maybe something is wrong with my lungs, I don't know. Is bronchoscopy worth doing in my case ?

Here are some possibly related advances in tracheal replacements/supports:
blogs.smithsonianmag.com/science/2013/05/doctors-use-a-dissolvable-3d-printed-tracheal-splint-to-save-a-babys-life/

www.harvardbioscience.com/regenMed.cfm

Catana
New Member


Date Joined Jan 2013
Total Posts : 10
   Posted 6/1/2013 11:57 AM (GMT -6)   
Next time you see an ENT ask them about the possibility of your having tracheal stenosis given your symptoms.

pocketfull
Regular Member


Date Joined Mar 2012
Total Posts : 350
   Posted 6/1/2013 6:24 PM (GMT -6)   
I was diagnosed 4 years ago with Spasmodic dysphonia. I have difficulty swallowing and run 0ut of air at the least amount of walking.
Talking a few minutes just wears out my breathing.
when i have to go to any function or small get together where one would be expected to join in the visit and I am just worn out in a minute, and with the voice goes all my strength. I am so disgusted with myself. I really should never say one word about my hubby. He is sheckled to a broke down old woman who he takes cqre of pretty good. I dont think many man would stick with me and the medical bills.
I am 62 years old. I was diagnosed with clinical depression 30 yrs. ago. Followed by: Fibromyalgia, spinal stenosis, arthritis, Neuropathy in both feet and lower legs for 8 years. Recently have neuropathy like burning in both hands and arms, possibly from damage to my neck.. I was diagnosed with diabetes about 4 months ago so my neuropathy is still diagnosed as idiopathic. Fibro and CFS.

Catana
New Member


Date Joined Jan 2013
Total Posts : 10
   Posted 6/1/2013 6:55 PM (GMT -6)   
neuropathy10 that is a lot of things you have to deal with!I hope you find some relief from pain! I know what the Fibromyalgia is like I have had it for 35 years! My tracheal stenosis was so bad and I was undiagnosed so long that basically I spent more than a few years on the couch! At the end I even slept on my couch sitting up for a year! So my husband had to be my caregiver all that time! I am sure other people just thought I was lazy!When my stenosis was really bad before I had a dilatation I had swallowing problems that is the worst! Sorry you have to deal with that!

pocketfull
Regular Member


Date Joined Mar 2012
Total Posts : 350
   Posted 6/2/2013 3:54 PM (GMT -6)   
Hello Catana, thank you. Some years ago I would just be talking on the phone to my sisters or Mom. they picked up on it right away. I had it for at least a year before it got bad enough that my voice was so broken I had to try something.

My doc wanted me to go to MD ANDERSON in houston tx. for a shot botox in my voice box. I thought about it and decidede to not have it. Im so glad I didnt. I have talked with several patients in my ENT office and they were all upset because it didnt last very long. I just cant see using botox right away. I hate traveling and just the trip to houston is enough to cause a major panic, manic, fibro flare, neuropathy flare and who knows what else.

Actually, I am somewhat of a recluse. I have no friends and my family is all I speak to, and of course my husband. He doesnt mind my not being able to talk. i forgot, one time I got up one morning and tried to tell my dog and cat good morning. I had no voice at all. I could not speak a word, not a bit of sound. I didnt have any problem breathing. I emailed my sisters and mom and told them to just email for our daily visit. My husband thought it was funny.

I have had so much crapolla health problems in in recent years I didnt bother a doctor trip with this one, voice came back in 3 or 4 days.I would rather eat than talk so as long as I dont run out of my good soups and pasta and mashed potatos Im fine.

I am so off balance so much I dont do as much cooking as I love to do. I miss it. I just dont have the energy. I did take my dog on a walk yesterday and will do it later today. I tested my pool temp and it is warm enough for my first swim of season......I hope you are having a great weekend, and as pain free as possible......regards...Cathy
I am 62 years old. I was diagnosed with clinical depression 30 yrs. ago. Followed by: Fibromyalgia, spinal stenosis, arthritis, Neuropathy in both feet and lower legs for 8 years. Recently have neuropathy like burning in both hands and arms, possibly from damage to my neck.. I was diagnosed with diabetes about 4 months ago so my neuropathy is still diagnosed as idiopathic. Fibro and CFS.
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