| | Joined: Nov 2005 Posts: 1,128 Patient Advocate (1000+ posts) | OP  Patient Advocate (1000+ posts)
Joined: Nov 2005 Posts: 1,128 | Yesterday, I went in for a Modified Barium Swallowing Test.
Surprisingly, I am still able to actually swallow small amounts of the thicker-than water concoction (That was the only test stuf they used in my case).
Sadly, I also 'silently' (Without knowing it) aspirated some of the stuf. In fact, it was coming out below my trach tube the rest of the day.
They are setting me up with three swallowing therapy sessions.
My main reason for wanting to swallow is to get rid of the mucous that quickly builds up when I try to talk (Looks like I'll be dependent on my PEG for the rest of my life).
Age 67 1/2
Ventral Tongue SCC T2N0M0G1 10/05
Anterior Tongue SCC T2N0M0G2 6/08
Base of Tongue SCC T2N0M0G2 12/08
Three partial glossectomy (10/05,11/05,6/08), PEG, 37 XRT 66.6 Gy 1/06
Neck dissection, trach, PEG & forearm free flap (6/08)
Total glossectomy, trach, PEG & thigh free flap (12/08)
On August 21, 2010 at 9:20 am, Pete went off to play with the ratties in the sky.
| | | | | Joined: Aug 2009 Posts: 90 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Aug 2009 Posts: 90 | Pete, my husband "flunked" his swallowing test and wasn't aware that he was aspirating either. The speech/swallowing therapist was phenomenal and he saw her several times and had to learn how to position his head and neck a certain way to safely swallow.
Initially he could only tolerate thick fluids such as apricot juice but he eventually made progress over time and no longer aspirates and can eat just about anything now except for my well done chicken.
Good luck
caregiver to spouse, 55 yrs, dx 9/09 SCC BOT, T2N0,nonsmoker, nondrinker, HPV 16+ ,Lt hemiglossectomy, lt modified radical neck dissection, lt tonsillectomy,PEG 11/08 removed 2/09, 30IMRT, CT neg 4/09, neg CT 10/09
| | | | | Joined: Mar 2008 Posts: 404 Likes: 2 "OCF Down Under" Platinum Member (300+ posts) | | "OCF Down Under" Platinum Member (300+ posts)
Joined: Mar 2008 Posts: 404 Likes: 2 | Pete
From the bottom of my heart I sincerely hope that your prediction that you may be dependent on the PEG is wrong and that with time your situation changes for the better. Best wishes for success at the swallowing sessions.
Thinking of you.
Karen
46 yrs:
Apr 07-SCC 80% entire tongue removed,T4N1M0
Neck/D,Jaw Split, Trache 2 ops,PEG 3.5yrs
30 x rad,6 x Cisplatin,
30 x HBO
Apr'08- flap Recon + ORN Mandibulectomy
(hip bone to reconstruct jaw)
Oct'08 1 Plate out-jaw
Mar'09 Debulk flap
Sep'09/Jan&Nov'10/Feb&Jun'11/Jan&Jul'12/Oct'13/April'14-More surgery
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Pete I have no words od wisdom, but can say I had to swallow pills for my test. This I did do and passed it. Like everything Pete, it all takes time for us .
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
| | | | | Joined: Nov 2005 Posts: 1,128 Patient Advocate (1000+ posts) | | OP Patient Advocate (1000+ posts)
Joined: Nov 2005 Posts: 1,128 | The last time I took a swallow test, it was a breeze with all the test substances, but this time the only part of my tongue left is about 3/8" in the back. I'm surprised I have the swallow ability at all.
The real problem, besides the total glossectomy, is that radiation plus two surgeries has left my neck a mass of scarring that is blocking both my esophagus and trachea (I still have a trach tube, so even a successful swallow won't be much in terms of food volume.
Age 67 1/2
Ventral Tongue SCC T2N0M0G1 10/05
Anterior Tongue SCC T2N0M0G2 6/08
Base of Tongue SCC T2N0M0G2 12/08
Three partial glossectomy (10/05,11/05,6/08), PEG, 37 XRT 66.6 Gy 1/06
Neck dissection, trach, PEG & forearm free flap (6/08)
Total glossectomy, trach, PEG & thigh free flap (12/08)
On August 21, 2010 at 9:20 am, Pete went off to play with the ratties in the sky.
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