Friday, July 6, 2012

What to do if you suspect you may have Idiopathic Subglottic Stenosis

You suffer from difficulty moving air in and out.  You hear a wheezing sound on inhalation, its starting to get noticeably worse.  You have probably already googled many things: breathing problems, shortness of breath, windpipe, trachea, respiratory issues, etc......... You probably are on an Athsma inhaler after your ENT incorrectly assumed Athsma.

The first thing you need to do is see your general family practitioner as you'll need to rule out other respritory problems with some routine tests. 
  • airway CT scan
  • chest x-ray
  • respiratory function studies 
  • a blood test
If your family practitioner is stumped, you don't have asthma, allergies, or cancer, then the next step is to see your ENT for a direct laryngoscopy (a fiber optic instrument that goes through your nose to look more closely at your throat) This is very uncomfortable, but they will numb your nasal cavity to lessen the discomfort.  If your ENT suspects there may be something down there, he'll want to do a bronchoscopy next, which you will need to be put out for, and will get a much clearer look.

THE NEXT STEP IS VERY IMPORTANT:  Don't let any doctor touch you unless he or she is a genius. If your doctor has a hard time diagnosing you, or shows ruffled feathers or bafflement, he/she is NOT going to be the right choice for treatment.  It's a rare diagnosis, hence tough to find the right surgeon.  Since being diagnosed with IPSS I have read many many horror stories about laser surgeries leaving you with more scar tissue than you started out with, and many patients who have ended up in the wrong surgeon's hands and now breathe through a tracheostomy.  You want the best surgeon, or the result can be devastating.  I know many doctors who would love to claim they are an 'expert' when they really are not.  Ask quantitative questions such as, "How many IPSS patients do you currently treat?", and "How many of these surgeries have you performed to date?"  Also go online to trusted resources only.  

I have learned that some people suffering from Tracheal stenosis are cured after 1 - 3 laser surgeries of balloon dilations.  So my recommendation is most definitely to see a qualified ENT or thoracic surgeon to see if you are among this lucky group of people who are cured with a less invasive procedure.  Now myself, after 11 laser treatments, I have been told I may not be a good candidate for tracheal resection because of the damage lasers can cause.  Balloon dilations, on the other hand are a good non-invasive, although temporary treatment that an ENT can offer if resection sounds too frightening, or while you weigh the pros and cons.

I am still weighing the pros and cons.  I don't feel confident that resection is the answer for me because I can go a year to 18 months in between dilations.  I believe major surgery should be reserved for emergencies.  I know a mis-step during resection could be devastation at best, and this is not something I'm feeling good about at this point in my life.  Now if I get to a point where I am narrowing down and needing dilation every three months, I would certainly go for a resection.

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