Thursday, July 5, 2012

What is Idiopathic Progressive Subglottic Stenosis?

 I am pleased to announce tracheal (subglottic) stenosis now has a facebook page!!!   No really, it does!  It's a closed group, so your work friends and family won't see what you post.  Go to facebook and search "Living with Idiopathic Subglottic Stenosis".  I'm sure you will feel so much relief that you now have online support and a forum for chat about this uncommon disorder.

You will see a couple different names for it:

Idiopathic Laryngotracheal Stenosis (ILTS)  
Idiopathic Subglottic Stenosis
Fibrosing Subglottic Stenosis

I call it Idiopathic Progressive Subglottic Stenosis because that's what my first diagnosis from Dr. Dedo at UCSF was called. IPSS


It's very rare, therefore hard to detect, hard to diagnose and especially difficult to treat.  Most, if not all people who suffer from IPSS will have been wrongly diagnosed as athsmatic.

Symptoms can include, but are not limited to, dyspnea (shortness of breath), stridor (wheezing) and coughing.  People report needing treatment anywhere from every 6 weeks to every 2 years, and are almost exclusively female. 


For me, yearly treatment is scary and expensive.  Scary because one day my children will have to take care of me and keep up on maintaining my airway.  The alternative is suffocation or tracheotomy. SCARY AND EXPENSIVE, VERY.  I am blessed to have family who helps out with insurance costs.  With this diagnosis, you will need guaranteed issue insurance, or you will go broke.  Not to mention travel costs to see a well-practiced specialist.

Two times when I went longer than a year between surgeries, (once with the pregnancy of my son) I got letters from Dr. Dedo's staff.  "If you don't come in for a yearly procedure you will end up with a tracheotomy." I really didn't care for this pressure, it's my body, right?  I should be the one who says when it's time.  I had a total of 11 laser lanyngoscopy surgeries, received two of those letters, and received countless lectures from Dr. Dedo as scare tactics warning me against seeking other procedures.  I felt compelled to seek a new surgeon. 

I found Dr. Senders through online research.  I immediately liked his no-pressure approach.  I liked the idea of less-invasive balloon dilation as opposed to actually being cut with the laser laryngoscopy Dr. Dedo swears by.  To my question of how often, he nonchalantly answers, " It's your body, and you can let me know how often you would like to see me."  I cannot tell you how much I loved that answer.

2 comments:

  1. I was a patient of Dr Dedo for 22 years with IPSS (subglottic stenosis) He saved my life. In 95 had a trach which is no big deal, is is not even painful as you would think. not with the Dedo cut, which has the least number of compilcations. Dedo retired in 2010, I had 35 operations with him, which were no big deal either. The worst is coming out of anesthesia and by evening go to the beach. A little bit of a sore throat for a few days. Dedo did not know that this stenosis can be growing other places. I found out just recently in Jan, at the entrance in the main stem and both entrances of the upper and lower lobes of the left lung, so 3 spots have severe stenosis causing collapsed left lung. I am now breathing through the trach as my throat has recently decided to close up. I have lung disease also and have to deal with plugs. I never use the google address, if I can be of help to anyone use rosemaryholbert@hotmail.com with IPSS as subject

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    1. Hi Rosemary, and thank you so much for your comment. I too feel that going to the right doctor can save lives, not only for this condition, for so many uncommon other ailments as well. I am so sorry that your stenosis has led to a collapsed lung, on top of the challenges you face with lung disease, you are in my prayers. May I ask who you have been seeing since Dr Dedo's retirement in 2010? And did your doctor say this is common to have multiple stenoses?

      I do hope you have joined the facebook group, it sure is amazing to have a community of support for this disorder online. It's a closed group, but you do have to have a facebook profile.

      Please feel free to contact me anytime.

      My Best, HeatherAnne

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