Idiopathic Subglottic Stenosis- Tracheal Stenosis

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/

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.

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?

Ok, I'll letcha know.

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!

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

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

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.

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

AZQCMOM-

Welcome to Healing Well!

Due to the age of this thread please start a new topic and introduce yourself to our great members and ask any questions you may have.

Take care,
Bill