| Joined: Aug 2021 Posts: 3 Member | OP Member Joined: Aug 2021 Posts: 3 | Hello Everyone, I'm new to this forum but I would like to give thanks to everyone for all the information and for sharing
My husband is currently still in the hospital. Today is his 10th day and will be released tomorrow. He is 73 and had 75% of his tongue removed, and thankfully pathology reports confirmed that his mouth is cancer free. Unfortunately it did metastasize to his neck, two on the right and one of the left. Early stages and the doctor is certain that with 6 weeks of radiation and 5 rounds of chemo, he will be fine. His treatment will start in 4 weeks. Now he is still recovering from the surgery.
Until today, he is finding it hard to swallow. We have been practicing with Ice, but water has been a total fiasco. He spurts it out the moment it settles in his mouth. He came to a very low point the other day, and felt that he was an utter failure because he couldn't swallow a sip of water. The threads here has been helpful and encouraging, and I came across the advice of Shaker Exercise and Mendelsohn Maneuver. He's been practıcıng the Mendelsohn, and feels like its giving him more confidence and 'control' over his epiglottis. He doesn't feel much pain when he swallows, its just that he has a fear that it will go down the windpipe leading to silent aspiration and so on.
My worry is that time is ticking, and his treatment is coming around the corner. He has lost a lot of weight. Seeing how radiation could impede on his swallowing ability even further, I'm looking for any advice or anyone who had gone through similar experience. How should he over come the fear? How long does it usually take post-surgery to be able to swallow water?
thank you so so much for all your help and info, keep fighting and I wish you all the best of health! | | | | Joined: Oct 2012 Posts: 1,275 Likes: 7 Assistant Admin Patient Advocate (1000+ posts) | Assistant Admin Patient Advocate (1000+ posts) Joined: Oct 2012 Posts: 1,275 Likes: 7 | Hi Modanisa, you did not mention what is causing your husband’s difficulty in swallowing. Has he had a barium swallowing test at the hospital? I think that should be the first step in looking for help for him. The test is administered by an SLP who will go over the images with you and give him exercises and suggestions for swallowing. Do speak to his doctor about scheduling a test. In the meantime, he may have more success with slightly thicker liquids like cream soup instead of water.
Gloria She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards
Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016. | 1 member likes this:
Modanisa | | | | Joined: Aug 2021 Posts: 3 Member | OP Member Joined: Aug 2021 Posts: 3 | Hi gmcraft!
Thank you for your reply. He had the test yesterday. The doctor is worried about aspiration so he is off the water for now. He will be discharged today with a nasogastric tube. I do hope a thicker liquid like cream soup you mentioned will do the trick.
Before his surgery my husband had had many months of difficulty swallowing and on several occasions had made him almost choke. Now post-surgery every time he tries to swallow the water or the melted ice, he gets panicked and just coughs it out. But he has no problem, aside from the feel of swollen discomfort, to swallow his own saliva. However, since he started the Mendelsohn Maneuver and he does this exercise before placing an ice in his mouth, he's able to keep it down a lot better. | | | | Joined: Aug 2020 Posts: 173 Likes: 52 Assistant Administrator Senior Member (100+ posts) | Assistant Administrator Senior Member (100+ posts) Joined: Aug 2020 Posts: 173 Likes: 52 | I was on a nasal feeding tube as well. It takes awhile to get the swallowing process down. Good advice above to have them evaluate the swallowing process and get more exercises to do. The fact that he can swallow his own saliva is a good sign. That is how I started as well. Then, tiny amounts of water over the feeding tube.
I am about 15 months post surgery and can swallow fairly normally now. But, it did take months and i had to judge my progress in weeks/months rather than days. Hope this helps. Keep us up to date and hoping for a full recovery for you guys.
Nels
OC thriver, Tongue Stage IV, diag 3/12/20, surg 4/1/20, RT compltd 7/8/20
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