Nov 27, 2012 - 3:26 pm
Okay; I'm posting this as new because there are so many postings on this I just can't wade through all of them. Paul (my boyfriend, recently used to be fiance) had a total laryngectomy in August of this year. That would be just over three months ago. He is doing really well...lots of energy, has his appetite back for the first time in over a year, and is eating without the g-tube for the first time since last Christmas, and gaining weight! All fantastic news!
As far as speech, not such great progress. He has an electrolarynx, but still has so much edema that he can't use it on his neck. He can use it on his cheeck and it works okay, but he doesn't slow down enough for people to be able to make it all out, so it's frustrating. He thinks it's just fine to mouth words and whole paragraphs to me, or do basically charades all day. It's exhausting and also a pretty much one-way conversation. Also doesn't work in the car or in the dark. I am extremely frustrated with it and I know part of it is my problem for being good at lip reading and charades, and not just shrugging and saying "What?" (I know am doing that a whole lot more)
So, long story but here is my question for anyone who has an answer. Yesterday we went to UW Med to his doc and the speech therapist who suggested TEP. I was immediately filled with hope and he was encouraged, until the resident doc came in afterwards and said we needed the whole story and started going on about the problems with leakage, blah blah of the TEP. Suddenly Paul went from seriously considering it to the opposite. Quite frankly, we have had other experiences with this guy and I don't like him at all. He is always offering horror stories and talking about people who are much worse off, etc. I know he just thinks it's important to make sure we have the full story, but I don't like the negativity.
Could you share your experience with TEP (both good and bad)with me please? I trust you who have been through it more than anyone and would really like to get your input.