| Joined: Dec 2012 Posts: 26 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Dec 2012 Posts: 26 | I saw a speech therapist yesterday. Did the beginning of the swallow strength test and failed. The opening of the esophagus does not open. A repeat of the test revealed the same result. She gave me a handful of exercises to do to improve. They are (1) Supragottic swallow, (2) Masako exercise, (3)Mendelsohn Exercise, (4) shaker exercise, (5) Effortful swallow. These exercises are to be done often throughout the day staring slowly.
Does anyone have experience with these exercises on improving swallowing? Is there a board within this forum that deals more exclusively with swallowing?
Mr Mike
WM age 69, Stage III sqamous cell, base of tongue (left lingual tonsil), (1) node positive, Dxd Aug 2012, 35 rad treat with Cisplatin weekly, final treatment 10-16-12, CT scan 11-18-12 good result, PET in Jan 2013, good result, Barium swallow test...no swallowing function.
| | | | 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 | Sorry to hear of your troubles. There is an iPad, iPhone App, called iSwallow, developed by UC Davis Center for Voice and Swallowing, that has 15 video exercises for dysphagia, including the ones you named. It is supposed to be used under the direction of a speech and swallow clinician, who has or can obtain the password required to access all thevfestures..the alarm clock, progress, and others, although, just downloading the apps, you can still access the exercises under "instructions." I do the exercises, but haven't seen my speech and swallow therapist in several months to inquire about. It is on the computer also, but to what extent, I don't know.
Exercises: Massako maneuver, swallow amplitude, chin tuck, effortfull swallow, gum chewing, head turn, jaw thrust, lollipop swallowing, Mendelssohn maneuver, superglotyic maneuver, isometric all maneuver, tongue exercises, tongue rom, vocal exercises, isometric shaker.
There is a speech, swallow alternative feedings further down the menu here, that may be helpful.
Good luck, and sure others will advise as to their experience and knowledge.
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: 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 | Michael, sorry things didnt go better with the swallow test!
I again apologize, there are no sub groups within OCF. I understand OC has so many components to it. By posting in "After Treatment Issues" there are bound to be others who have gone thru the same or very similar situations. Im sure others will join in soon to give you support. 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: Sep 2006 Posts: 1,357 Likes: 5 "OCF Canuck" Patient Advocate (1000+ posts) | "OCF Canuck" Patient Advocate (1000+ posts) Joined: Sep 2006 Posts: 1,357 Likes: 5 | Hi Michael. Welcome to OCF. I had two OC surgeries and after the second one I had a terrible time learning to swallow again. My speech pathologist was RELENTLESS, and I did #1 and #5 exercises every day - many times - from the day after my surgery. My situation never got to the point where the esophogus was closed (I don't think?) but I do believe the swallowing exercises made a huge difference.
You didn't say what your therapist thought of your situation? Did they think that if you did the exercises you stood a good chance of getting your swallowing back? Do you have someone at home to nag you to death to do the exercises? I remember they were not fun to do and being constantly reminded helped me.
Keep us posted.
Donna
Donna,69, SCC L Tongue T2N1MO Stg IV 4/04 w/partial gloss;32 radtx; T2N2M0 Stg IV; R tongue-2nd partial gloss w/graft 10/07; 30 radtx/2 cispl 2/08. 3rd Oral Cancer surgery 1/22 - Stage 1. 2022 surgery eliminated swallowing and bottom left jaw. Now a “Tubie for Life”.no food envy - Thank God! Surviving isn't easy!!!! .Proudly Canadian - YES, UNIVERSAL HEALTH CARE IS WONDERFUL! (Not perfect but definitely WONDERFUL)
| | | | Joined: Dec 2012 Posts: 26 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Dec 2012 Posts: 26 | Pandora, The therapist felt she could help me. I will be honest that while I performthe exercises each day, I am not "relentless". She said that she thought that the esophagus would have to be stretched. I meet in another week with both the therapist and my radiologist and oncologist. she said she will recommend further treatment. My radiologist said base of tongue tumors often experience more swallowing issues. Thanks for your input. I'll keep posting. Mr Mike
WM age 69, Stage III sqamous cell, base of tongue (left lingual tonsil), (1) node positive, Dxd Aug 2012, 35 rad treat with Cisplatin weekly, final treatment 10-16-12, CT scan 11-18-12 good result, PET in Jan 2013, good result, Barium swallow test...no swallowing function.
| | | | Joined: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Dec 2003 Posts: 2,606 Likes: 2 | I will add that anyone with massive radiation could do these exercises every hour and only gain from them. You can't overdo it and long term you may risk atrophy. The constrictors are often the first to go and start your swallow as well as direct post nasal drip. Sound familiar to everyone going through treatment? Yes we have all had that goo piling up there and even doing excel isles may not fully resolve but it will help. Speech therapists can modify exercises as swallow changes. It will.
SCC Stage IV, BOT, T2N2bM0 Cisplatin/5FU x 3, 40 days radiation Diagnosis 07/21/03 tx completed 10/08/03 Post Radiation Lower Motor Neuron Syndrome 3/08. Cervical Spinal Stenosis 01/11 Cervical Myelitis 09/12 Thoracic Paraplegia 10/12 Dysautonomia 11/12 Hospice care 09/12-01/13. COPD 01/14 Intermittent CHF 6/15 Feeding tube NPO 03/16 VFI 12/2016 ORN 12/2017 Cardiac Event 06/2018 Bilateral VFI 01/2021 Thoracotomy Bilobectomy 01/2022 Bilateral VFI 05/2022 Total Laryngectomy 01/2023
| | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | Mike Another possibility is VitalStim, which is an FDA approved transcutaneous neuromuscular electrical stimulation device. Not all Speech therapists are trained in it. If you read some recent posts about the PEG tube, you can see that often patients take a year before getting off a feeding tube and learning to swallow real food again, so don't give up hope. I was lucky the first time around since without a PEG (based on my RO's advice since I had base of tongue cancer also), I never quit swallowing so could eat normally almost right away after TX. But the salvage surgery after the recurrence did a real number on me. Here is a study on VitalStim published at NIH, that indicates it really helps moderate dysphagia but not so much for severe dysphagia. VitalStim Unfortunately, VitalStim did not work for me as the damage to my epiglottis and the constrictor muscles was massive, compounded by a second dose of radiation frying the scar tissue, but it has worked for others. Can't hurt to try. You still do the same exercises with the SLP, but you also swallow water while getting the electrical stimulation to the swallowing muscles. I hope you make progress. 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: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Dec 2003 Posts: 2,606 Likes: 2 | Thanks for the app Paul!
Charm, like you the VitaStim didn't do much for my constrictors and I have one side of the epiglottis that doesn't lift.
Great info!
SCC Stage IV, BOT, T2N2bM0 Cisplatin/5FU x 3, 40 days radiation Diagnosis 07/21/03 tx completed 10/08/03 Post Radiation Lower Motor Neuron Syndrome 3/08. Cervical Spinal Stenosis 01/11 Cervical Myelitis 09/12 Thoracic Paraplegia 10/12 Dysautonomia 11/12 Hospice care 09/12-01/13. COPD 01/14 Intermittent CHF 6/15 Feeding tube NPO 03/16 VFI 12/2016 ORN 12/2017 Cardiac Event 06/2018 Bilateral VFI 01/2021 Thoracotomy Bilobectomy 01/2022 Bilateral VFI 05/2022 Total Laryngectomy 01/2023
| | | | Joined: Apr 2012 Posts: 60 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Apr 2012 Posts: 60 | Hi all, I had the Vita Stim also after the first bout with OSCC and it did not work for me. This is my second bout with SCC and I again will try the Vita Stim due to the neck dx made all the muscles for swallowing tight. I do urge people to give it a shot. What doesn't work for one of us it might for another. Robin
10/10 IV OSCC metastatic to lymph nodes. 10/10 Peg,Port,Trech. due to rad scarring cannot swallow. 9/12 Pet clean. SCC back again 11/12. Tumor attached to jugular, Rad DX left side of neck 11/19/12. No Chemo or Rads. MRI on 1/11/13 for chronic pain w/pet scan 2/15/13.
| | | | Joined: Dec 2012 Posts: 26 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Dec 2012 Posts: 26 | Thanks all, My epiglottis "seems" to work. The Barium swallow films show the barium passing the epiglottis and puddling at the top of the esophagus which does not open. My "adam's apple seems to move up and down while swallowing which is another good sign in my mind. If I take more than a teaspoon of water and try to swallow I will start coughing to prevent aspiration. In smaller amounts the water just regurgitates
If the therapist, who has been helpful and considerate, wants me to be relentless, I can do that. She just gave me the exercises but was not clear on how often and how long I should do them. I did, despite my best efforts, catch a winter cold and the cough and sinus drainage is not helpful, but in time this will pass. I meet with all the docs and therapist in the next couple of weeks and I will hopefully get some good direction.
In the meantime I appreciate all your comments. They are encouraging and I wish you all the very best in your recovery process.
Mr Mike
WM age 69, Stage III sqamous cell, base of tongue (left lingual tonsil), (1) node positive, Dxd Aug 2012, 35 rad treat with Cisplatin weekly, final treatment 10-16-12, CT scan 11-18-12 good result, PET in Jan 2013, good result, Barium swallow test...no swallowing function.
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