Idiopathic Subglottic Stenosis

. Last August or September 2018 I started wheezing when doing anything excertive. I thought maybe I’ve developed allergies. It would come and go. I saw a Dr. in Nov.  She listened to my lungs which sounded fine, the noise is in my throat...I have a hard time getting air in, and my throat ‘rattles’. She prescribed me several asthma medications. The inhaler did nothing for me. My friend Jeannie who has asthma recommended I see her Dr.  at  Advancements in Allergy and Asthma Care. So I made an appt. - they of course were booked out 7 weeks.

After seeing an Dr. Wexler on Feb. 25th he recommended I see a ENT Dr. asap! You don’t have asthma. Onward to the otolaryngologist;

After Dr. Mount put the scope down my nose and throat he said:

I don’t see anything, or rather I can only see to the vocal cords and it all looks normal. But if I crept around right here by the Subglottic -  (Idopathic Subglottic stenosisis is a narrowing of the airway below the vocal cords (subglottis) and above the trachea. Subglottic stenosis will involve narrowing of the cricoid, the only complete cartilage ring in the airway.)  I don’t know why you would have that. It doesn’t look bad. It looks like and sounds like Subglottic stenosis. That usually happens to people who are in a coma for 3 weeks or have had multiple surgeries or have been intubated multiple times. You haven’t had any trauma there? No, just the one surgery in 1988.    I would recommend a CAT scan. Joy.

Dr. Mount called after my CT scan and said I do have subglottic stenosis. I need to see a specialist at the U of M. They have no idea what causes it. It’s a rare disease that affects mostly women between 30-50yrs old. I know of 2 other women who developed this after being on chemo though.  I can breathe pretty good, sometimes sound like Darth Vader. I’ve read other stories and I’m grateful I can still function pretty well but it’s unsettling knowing I have inflammation closing off my airway! It's like I'm breathing through a straw. The Dr.’s video and Mayo link below explains it best.

https://www.mayoclinic.org/medical-professionals/pulmonary-medicine/news/multidisciplinary-care-of-idiopathic-subglottic-stenosis/mac-20451594
 

On April 17th Dr.’s are going to do a COMBINED ESOPHAGOSCOPY, GASTROSCOPY, DUODENOSCOPY (EGD), GASTROESOPHAGEAL REFLUX TEST WITH MUCOSAL PH ELECTRODE to rule out acid reflux. A capsule will be placed in my esophagus for 96 hrs. and I have to wear a monitor pack, record every time I eat or drink something. You can have acid reflux without symptoms of heartburn. Results - no acid reflux, all normal.

On May 10th I had a Flexible/Rigid Bronchoscopy, everything went great! Dr. said it was scar tissue from a surgery I had in 1988. He used an intrament to "grate" the sides of my trachea. Hard to understand why after 31 years of being alright it would act up. It's just great to breath again.