Hi, Everyone,
I haven't updated for awhile, so thought that I would let you know what has been happening with me. I had 11+ hour surgery on April 9, 2014 which included removal of the base of my tongue, my epiglottis, and a neck dissection. They were able to save my vocal chords, so I have been working with a speech therapist, and while I am sometimes difficult to understand, I am speaking with the aid of a Passey-Muir valve. I am totally tubefed and have a permanent trach. I have also been doing some "dry" swallowing exercises. Apparently the next step would be a swallow study. I saw my surgeon yesterday (2/27) and he scoped me and everything looks good. I had a PET scan in November and that looked good, too. Has anyone here had a swallow study, and how did it go?

John has just had a swallowing test. The speech path was excellent. We started off with a detailed interview on what John can do/can't do, and his goals. Then she manually checked John's swallowing as he was drinking some water. She then made him swallow food of different sizes and consistencies but coated with barium so that it would show up on the x-ray. We were surprised that John could swallow a piece of bread but not a capsule (it ended up in his sinus). Then the speech path reviewed the video with us and as she went along, gave him more tips on what he should do when swallowing. The atmosphere was relaxed and the speech path was really friendly.

Thanks, Gloria. My speech guy told me that they would first try pudding, then honey, then nectar, then finally a thin liquid like water. They would wait after each step to see how I would tolerate each item. It surprised me that they would start with the thicker items first. Since I don't have an epiglottis, and my tongue doesn't work very well, it will be interesting to say the least.

zengalib, I hope things work out. it sounds like things have been rough. I wish you the best.

They start with thicker items as these are least likely to "leak" down Into your lungs. Thinner liquids easily run down the path of least resistance into the lungs, especially if you dont have an epiglottis. The Epiglottis is what closes to protect the lungs from food and fluids. I imagine this will be quite a feat to swallow and not aspirate. Perhaps the SLT has some swallowing techniques to teach you to prevent this from happening. I hope this goes well for you and that you are able to restart swallowing.
Tammy

Yes, Best Wishes with your testing! I had swallow test post surgery and immediately was scheduled for a PEG Tube as I failed it miserably! I was getting a tube prior to starting radiation/chemo so this just pushed it up quicker. Issues are a small path for things to travel, some paralyzed areas, and nerves controlling soft palate were wrapped up in tumor and ended up being sacrificed, all creating pooling in the area where wind pipe closes off. Will work on these issues after treatment is wrapped up. I'm a hard head so I am still challenging myself and trying to eat at least a little bit every day, being cautious not to aspirate, and helping to keep these muscles working! The pathologist will show you the scans/video and walk you through techniques to improve, very interesting to view. Best of Luck zengalib! Keep us up to speed.

Zengalib, have you been doing dry swallows to keep the swallowing muscles working? Having observed John for more than two years, I would say that even if you can swallow just a little (of whatever consistency you can manage), it would be worth it. To try swallowing in a hospital setting is probably the best. Wishing you the best of luck. Please keep us posted.

Best of luck hon... you are a trooper in a big way... and the ultimate definition of survivor.

HUGS!