| | Joined: Jan 2013 Posts: 6 Member | OP  Member
Joined: Jan 2013 Posts: 6 | Hi I'm Steve, 62,y/o, who has had radiation in 2005 of the soft palate on the left side & had a little difficulty swallowing then but was clean until Oct 2012 when they found cancer of the tongue & soft palate on the R. side. They also removed the lymph nodes also. I can not swallow at all except through exercises I can drink water now. I don't plan on being on this PEG tube the rest of my life and the exercise I do now is lay flat and raise my head to see my toes for 2 min. as many times a day that I can. Does anyone have any other suggestions as what I might try to get those muscles to work again?? Thanks, Steve
Last edited by ChristineB; 01-21-2013 04:23 PM.
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 7 | Welcome to OCF, Steve! Always nice to have another long time survivor join the forum. Sorry you have been thru a recent recurrence.
There are a few things to help with swallowing. There is a vita-stim which the doc places electic stimulators on your throat. Its supposed to help stimulate the muscles to get them working again. Unfortunately, Ive heard mixed reviews about the vita-stim. But it may be worth a shot to at least give it a try. Also ask about a barium swallow test to see how well your swallowing muscles are working.
ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive  | | | | | Joined: Jul 2012 Posts: 3,267 Likes: 4 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jul 2012 Posts: 3,267 Likes: 4 | Welcome! Do you see a speech and swallow therapist? If you do a modified barium swallow, they are usually involved, and can possibly give you exercises to do, after seeing the extent of the problem, which may be best. There are a dozen exercises, with various names. If you have an iPad or iPhone, there is a free Apps called, iSwallow, which has instructional video exercises the therapists use, but to use more of the apps, requires a password from a clinician, if they already utilize or want to register their practice, but the videos are still accessible to anyone
Good luck with everything.
10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs
| | | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Mar 2008 Posts: 3,082 | Steve The exercise you describe is called the Shaker Head Raise. It is the most basic of all rehabilitative swallowing techniques. You should master it in a week with some work. My advice is to get your doctor to write a prescription ASAP for speech therapy and then make an appointment with a SLP (speech language pathologist) who has swallowing experience. I know it sounds funny to get "speech" therapy when what you want is "swallowing' therapy but in one of those medical quirks, SLPs are the best at swallowing therapy. Here's a peek at the exercises in store for you Rehabilitative Swallowing exercises Most people do regain their swallowing, so go for it. Mine was an exceptionally complex and unfortunate situation Charm
65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin
Passed away 4-29-13
| | | | | Joined: Jan 2013 Posts: 6 Member | | OP Member
Joined: Jan 2013 Posts: 6 | Hi Christine, I've had a Barium swallow test last week which showed some improvrment from the 1 they did shortly after surgery of course but it's far from improving my swallowing. I see the surgeon next week and i'm going to ask him about the Vita-stim procedure, Thanks, Steve | | | | | Joined: Jan 2013 Posts: 6 Member | | OP Member
Joined: Jan 2013 Posts: 6 | Hi Charm, yes I do see a speech therapist and I'm doing the shaker Head Raise exercises now.. Due to the fact that I was Radiated in 2005 now this surgery it has complcated my situation also. I'm going to see a Thoracic Dr. soon and see if dialating my esophagus will help any like when I had radiation. Are you able to swallow whole food now? I will check out that link on exercises, Thanks | | |
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