To resect or not to resect?????

I have no reason why I made that appointment with Dr. Senders, my current doctor in April.  I honestly think that God's plan for me was to receive this information, after a decade suffering with ISS, it was time for good news.  The information Dr. Senders delivered to me had me blubbering with tears of joy - THERE IS A PERMANENT SOLUTION!!!!   He mentioned Tracheal Resection so nonchalantly - does he not understand this is an answer to my prayers?  He almost said it as a side note. "Ahem, excuse me???   Sign me up!"  I said.

I'm not exactly sure why I decided not to consider Dr. Senders himself for the tracheal resection, as he has given me very competent care - probably because his specialty is cleft lip, and becuase of all the horror stories I have read about ISS patients getting into the wrong hands for this surgery.  A rare disease calls for the most skilled surgeon in this exact condition.  So my friend Dr. Matt Forrester hooked me up with an appointment at Stanford.

I was left confused after my consult at Stanford Hospital......the news was devastating, yet not unexpected.  I am so very appreciative of Dr. Shrager's very honest advice, but upset nonetheless.   I kept it together until we returned to the waiting room.

"My advice is to continue with the balloon dilations, that's what I would do if I were you."  Shrager said.  My list of prepared questions is now rendered useless, he does not want to operate on me.  Why does the Chief of Thoracic Surgery turn me down? He fears the laser surgeries I was subjected to may have left 'the field' in a condition that I would have less satisfactory results.  He also fears that the exact location of my subglottic scar might be too close to my vocal cords.  "I have doubts that I am the surgeon who can do a flawless job considering you have had almost a dozen laser treatments." were his exact words.

Dr. Shrager did give me a glimmer of hope, in fact he highly recommended Dr. Mathesin of Mass General Hospital if I were to pursue the resection.  Dr. Mathesin trained Dr. Shrager, and he has complete faith that when it comes to this surgery, Dr. Mathesin doesn't fear proximity to vocal cords, OR previous surgeries.

Now the tough part - making a decision to continue with dilations or go to Boston.  I think the decision would be easy if I didn't have two beautiful children.  My place here in this world matters immensely in their lives.  I cannot even begin think about not being around for them - it's too painful.  But then again when I think about the relief I would feel post resection - as log as I am among the 80% of patients who have great results.   I would feel so much peace to think I wouldn't have to return every year for a dilation.