‘Work is a blessing when it helps us to think about what we were, but it becomes a curse when its sole use is to stop us thinking about the meaning of our life’ (Like the Flowing River – Paulo Coelho)

A very philosophical way to start a blog I guess. But I read it on my facebook page and I thought it was rather fitting in a way. Life has kept me so busy these last few days I have had very little time to get caught up in entertaining ‘gloom and doom’ thoughts. And at the same time thinking any positive and reassuring thoughts as well. So I guess for this circumstance you could exchange the ‘thinking of the meaning of our lives’ with ‘thinking about the situation ahead’. Perhaps it is not such a bad thing in this case.

Be that as it may, with this lack of mental overload I haven’t been able to accumulate much to write about this time. So I thought to myself it is time to share another personal story. When I read this for the first time I had to swallow hard. We all have our strife with this condition, particularly if the cause is idiopathic. However, each story is unique, individual and has its accompanying hardships. This is from a strong, courageous young woman from America.

My story is very long so I will try and answer it as briefly as possible.  First, bless you and your day to day life with ISS.  I have TS from being on a ventilator for 95 days (or it could have been caused by injury when being intubated).  I had so much scar tissue and went to my ENT who put in a trach and removed it twice only to have to put it back in again….During these trach surgeries he performed dilations…..however after three…he gave up and gave me a year to live.  I found an excellent Dr who is the head of the Otolaryngology Dept. at Emory University Hospital in Atlanta, GA  USA.  He scoped me and said I was not a candidate for a resection.  There was just not two good pieces to put together by removing one bad so he would have to do a reconstruction.  It started with a very long surgery where he cut out the bad scar tissue and put over 140 stitches in my trachea .  As a complication from this  surgery, I wound up with a paralyzed vocal cord and had to have a trach for two + years to breathe.  The second reconstruction was an attempt to get that trach out and he once again had to remove scar tissue caused by the trach.  He also performed a series of surgeries that involved removing cartilage from my ear and placing it in my trachea.  He mentioned the use of a stent to hold that graft in place but felt he didn’t need it.  After the graft surgery, the trach finally came out and stayed out.  I have been trach free now since Oct 2012.

Your story is huge….anyone who suffers with this is really a brave and courageous person….and often frustrated by the fact that it is rare and so many doctors don’t know what to do.  I have heard great things from London re: this condition so perhaps you are now in the right hands to move forward.  My immediate family has been very supportive.  My husband tells me all the time how much respect he has for all I have been through.  He claims he could never have done what I have had to do.  He and other family members have had to help me with even basic chores that I can no longer do without help.  I am talking about shopping for groceries, laundry, etc.,  I cannot walk 50 feet without rest.  What I have found is that doctors don’t realize the physical change all of this takes on your body.  I do hope that helps.  I had many dark moments and questioned my existence for awhile but soon got past it.  Truly, without my strong faith in God, I am not sure if I would have made it on my own!  Good luck with your upcoming Reconstruction. I feel the more we share about this the better it will be for all of us!


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