Well, I failed my Barium Swallow Test yet again. This makes three in a row. At least I could swallow one third of a teaspoon of barium without aspiration so I will endure another 12 sessions of Vitalstim and take another MBS in December. Of course since 1/3 of a teaspoon could not provide enough nourishment for a mouse, let alone a grown man - no food not even soft or pureed this year for me. Seven months and two weeks of nothing but Jevity 1.5 (and wine) down the PEG.
Now they think it was the extra 25 GY of radiation on top of the earlier 72 GY that has damaged the nerves that control swallowing. So October and November will be spent driving to the CCC twice a week, dealing with their parking and paperwork, and sitting in a room for an hour trying to swallow. I am up to 300 "audible swallows" but apparently lots of them are just aspirating spit and saliva into my lungs which apparently does not cause any health issues. Food however if aspirated would be life threatening.
Still it does beat the alternative of being dead, and we are saving some money on groceries as the insurance picks up all the jevity tab now that I met my $6,000 catastrophic co pays for this year. I have not given up hope for a Christmas miracle but don't have much faith in it either.
charm

Martin was quite lucky i suppose as he could swallow a little after about 1 month of the end of treatment, but he needed to do a triple swallow. He can now swallow much better 1 year on, and eats almost everything (sometimes with lots of water). But he does get cases when food gets stuck somewhere in the throat without him realising. He told the endoscopy consultant "I sometimes cough and a corn flake flies out of my mouth, it's very embarassing", "really a corn flake?" to which martin answered "oh not always a corn flake, sometimes it's a sugar puff that flies out!". He's mad! but I did laugh when he told me.

OK - I'm going for my second attempted esophageal stretch today. The one a month ago was not a success so I have not swallowed anything since March 2008. Wish me luck. Charm you should not be discouraged by my lack of recovering swallowing ability. We are all different and recover at our own pace - you knew this I just needed to say it. Take care.

Good luck on the stretching. Last week, my ENT surgeon reviewed the DVD of my 3rd MBS and concluded that an esophageal dilation would not help me. My VitalStim speech therapist moved my next MBS up to Nov 19th as I will have then completed 24 sessions.
It was discouraging to realize that the new 2.7 Million dollar NIH clinical trial on vitalStim type therapy explictly excluded patients like me for failing these eligibilty requirements as they indicate permanent swallowing damage.
[quote]# surgery to tongue if less than � of oral tongue or less than � of tongue base resected
# no floor of mouth muscles resected
# All primary tumor resections should predate the radiation treatment.[/quote]
I am already rationalizing why a lifetime PEG may be good:
no tooth decay, no eating "cardboard food" with no taste, insurance pays for my food, and of course, the ability to have Wine at happy hour. Good luck

Just a quick update: going to my 21st VitalStim session this afternoon and am up to 360 "forceful swallows" of "nectar". After this next MBS, planning on ditching VitalStim as I will have done 24 of them and all their literature as well as posters here indicate that if it was going to work, it would have worked by now. Here is the link to the NIH study I mentioned, even though it is using a different machine than the VitalStim - same principles. I can see now why they excluded people like me from this study
NIH study on swallowing

How was it Charm?

same old same old airkitty
I won't know until the next MBS on Nov 19th how I am doing.