Swallowing difficulties after total glossectomy

Hi, I am from Hong Kong, my Dad, 81 years old, has been diagnosed with BOT cancer stage 4A (T3N2M0) in April 2015 and had total glossectomy with flap reconstruction, Right radical neck dissection, left selective neck dissection and laryngectomy on 7 May 2015. He has returned home for recovery since 29 May 2015 and we have encountered the following problems which I could not find any support/advice from the doctors locally, hope to see if anyone here can share their experiences.

1. Swallowing difficulties - He can only use a syringe to inject 3 packs of Isosource milk (237ml, 330 calories per pack x 3) per day and some water. He is reluctant to intake anymore liquid and said he is full after 3 packs of milk. His weight dropped from 60kg pre-surgery to 49kg now. He cannot swallow even yogurt or puree. Any chance for him to improve his swallowing abilities? The next H&N doctor appointment is 28 July, not sure if he keep loosing weight, to which point we need to consider tube feeding.

2. Lower Back Pain at sleep - He has pain every night during sleep, he said his neck cannot move therefore cannot sleep on the sides and strain his back muscle. He tried couple pillows to support the lower back but still not working.

3. The doctor recommended 35 times XRT after the surgery, however, given his age, he has decided not to do any XRT.

Thanks a lot.



  • kjp37
    kjp37 Member Posts: 11
    Almost the exact same

    I had a total glossectomy and bilateral neck disection but the radical bit was done on the left side and selective on the right. Im over a month out of treatment and im starting to regain strength in my neck still feels tight though, when I came home i only ever slept on my sides and sometimes raised my head as a kind of a exercise, at first your dad may need to use his hand to support his head. 

    I have a feeding tube and before the surgery I weighed 50kg its now up to 57kg i have 8 milkshakes a day and some high fibre milkshakes that stop me going toilet 4 times a day. 

  • jackflash22
    jackflash22 Member Posts: 524 Member

    I have difficulty lying on my back but find putting a cushion or pillow under my knees relieves the back muscles. I had an hour and quarter scan recently lying on my back and the nurse put a wedge under my knees and it helped immensely. I do it at night now when I lie on my back and if you put a pillow between your knees on your side it helps. 

  • lornal
    lornal Member Posts: 428

    Check out WebWhispers.org.  It is for laryngectomees (larys), their care givers, and medical professionals.  YOu can join as a caregiver.

    Very supportive, and lots of help and lots of information.  (You don't have to be a member to look at the information, but there is a forum for members).



    2007 & Lary since 2014