Update as of right now

When I posed about my ENT contacting a provider she knew, I said it was at Mayo, Rochester.  I was wrong, it was at the U of M.  So, here is what I know as of right now:

She spoke to an ENT she knows personally at the U and discussed my case with him in detail.  This was his suggestion.  He suggests a tracheal resection and possible gastric bypass.  Two MAJOR surgeries.  She asked me my thoughts.  I have in the past looked up stuff on tracheal resection.  Since my area of blockage is so "thin" but all the way across (thus blocking) I would be a good candidate for this.  They would go in and literally take out that part of my trachea and reconnect the gap.  I would probably be in a C-collar for a while, and recovery will be a while, but in all the statistics that I have looked up, it has worked!  I am also in a group on Facebook for people with Idiopathic Subglotic Tracheal Stenosis, several people have had this surgery done on there so I asked their opinion.  I got so many responses stating that this surgery gave them their life back and it was the best decision they ever made.  So, this is a surgery that would NOT be done in Eau Claire due to how dangerous of a surgery it is and how high the risks are.  With my approval with the go-ahead Dr. Defatta sent the referral to the ENT team at the U and she is hoping I hear something from them by the end of this week.  

With the gastric bypass.  This is another MAJOR surgery.  The reason this was suggested as a possibility is because I'm having such a hard time loosing weight and they don't know why.  It could be of the adrenal insufficiency-due to long term steroid use.  I've been watching what I eat and exercising more.  But, I think I was concentrating so hard on eating so much less that I maybe wasn't eating enough and that was decreasing my metabolism.  So, now I have made some changes in my diet and we will see what happens.  I am still on the "low acid" or alkaline diet because we don't want the "shelf" across my trachea to get any thicker so I won't be a candidate for the resection.  So, instead of having the reflux surgery they would possibly do gastric bypass.  

The reason the ENT at the U suggested the resection is that it would be one (MAJOR) surgery instead of having several little ones that we don't even know if it will work.  

So, I am kind of in a waiting game again, but things are moving!  I am hopeful that the providers at the U will call soon and set something up and the ball will get rolling.  I trust Dr. Defatta with her suggestions.  I am continuing for now still at pulmonary rehab and increasing stuff usually each week.  I still have no voice (which I think the boys like).  It seems like I take 2 steps forward and 10 steps back, but even at that place I will eventually come out ahead.  I will update once I know more!