Help concerning the swallowing muscles

MLC53
MLC53 Member Posts: 109
edited March 2014 in Head and Neck Cancer #1
Can anyone out there share their experiences with learning to swallow again? I am 4 mos post treatments and my swallowing works ok sometimes and other times the muscles feel like they go into spasms or sort of like a paralyzed state when I try to swallow. When I get up in the mornings, I have to re-train myself to swallow because the muscles don't work that well at first. Has anyone else had this problem? If so can you give me any pointers? Will this get better?

Comments

  • wkb33919
    wkb33919 Member Posts: 1
    I finished my treatment in April of '06 and have am fully recovered now. The first few months were somewhat challenging, but with time and patience it continues to get better. One of the most important things is to drink plenty of fluids while you eat. If you're like most of us you've probably had your saliva glands destroyed by the radiation treatments. This is what compromises your swallowing because your lubrication is gone. The most important thing to know is that overtime it will get better. Like I always tell people, its going to be ok. I'm thankful that medical science was there for me, twice now. I'm also a prostate cancer survivor. Every day is a blessing.
  • BugHunter
    BugHunter Member Posts: 152
    Sounds to me like you are right on track! At 4 months post treatment I was just starting to eat again and had the same problem. Some certain foods or too big of a bite was NOT going to go down! I am now about 8 months post and can eat most stuff but, too big of a bite can still be a problem. I still do not eat at resurants just in case I choke on something as it never a pretty thing........LOL It will get much better for you sooner than you think!
  • MLC53
    MLC53 Member Posts: 109
    wkb33919 said:

    I finished my treatment in April of '06 and have am fully recovered now. The first few months were somewhat challenging, but with time and patience it continues to get better. One of the most important things is to drink plenty of fluids while you eat. If you're like most of us you've probably had your saliva glands destroyed by the radiation treatments. This is what compromises your swallowing because your lubrication is gone. The most important thing to know is that overtime it will get better. Like I always tell people, its going to be ok. I'm thankful that medical science was there for me, twice now. I'm also a prostate cancer survivor. Every day is a blessing.

    Thank you for your reply. It is uplifting to know that you are fully recovered! Thanks, too, for giving me encouragement to look forward to things getting better.
  • MLC53
    MLC53 Member Posts: 109
    BugHunter said:

    Sounds to me like you are right on track! At 4 months post treatment I was just starting to eat again and had the same problem. Some certain foods or too big of a bite was NOT going to go down! I am now about 8 months post and can eat most stuff but, too big of a bite can still be a problem. I still do not eat at resurants just in case I choke on something as it never a pretty thing........LOL It will get much better for you sooner than you think!

    It's good to know that I'm on track. I'm able to eat only bean soups but I'm getting so tired of bean soups! I look forward to being able to eat regular foods again. Thanks for the encouragement!
  • 3_Putt
    3_Putt Member Posts: 18
    I'm just over a year post treatment. I'm happy to say that it's almost like it never happened (knock wood). The sudden lack of ability to swallow only happens once in a great while. Hang in there.
  • MLC53
    MLC53 Member Posts: 109
    3_Putt said:

    I'm just over a year post treatment. I'm happy to say that it's almost like it never happened (knock wood). The sudden lack of ability to swallow only happens once in a great while. Hang in there.

    Thanks for the encouragement! So glad for you that it is like it never happened! That is wonderful news and gives me great hope!
  • cuzzy
    cuzzy Member Posts: 15
    Iam almost three months post treatment and barely six months post surgery. My swallowing was compromised by the surgery, which cut many of the swallowing "nerves." I was just learning to swallow again when radiation began and I was hit with Bell's palsy on the same side, paralyzing the same side that had been affected by the surgery and was being hit by the treatment. So it's been two steps forward, one back...I've been dealing with thick saliva in my esophogus and no saliva in my mouth...the only people who have seen me eat since May are my husband and my 30 year old daughter who came home for a month to help...it has not been a pretty sight and I laughed at the response of the person who still won't eat in restaurants. I find that by making myself eat only a small portion of "real" food and then pureeing the rest in the blender takes the pressure off of HAVING to eat to get enough calories...and of course, Ensure and yogurt also help add...but I find that there are many things I can eat now that I couldn't previously although it does take a long time and I know what you mean by your swallowing muscles "forgetting." Mine do by the end of the day when I'm tired...I keep reading on this site that people are able to eat relatively normally again eventually, so it does give hope...keep us posted on your progress.
  • MLC53
    MLC53 Member Posts: 109
    cuzzy said:

    Iam almost three months post treatment and barely six months post surgery. My swallowing was compromised by the surgery, which cut many of the swallowing "nerves." I was just learning to swallow again when radiation began and I was hit with Bell's palsy on the same side, paralyzing the same side that had been affected by the surgery and was being hit by the treatment. So it's been two steps forward, one back...I've been dealing with thick saliva in my esophogus and no saliva in my mouth...the only people who have seen me eat since May are my husband and my 30 year old daughter who came home for a month to help...it has not been a pretty sight and I laughed at the response of the person who still won't eat in restaurants. I find that by making myself eat only a small portion of "real" food and then pureeing the rest in the blender takes the pressure off of HAVING to eat to get enough calories...and of course, Ensure and yogurt also help add...but I find that there are many things I can eat now that I couldn't previously although it does take a long time and I know what you mean by your swallowing muscles "forgetting." Mine do by the end of the day when I'm tired...I keep reading on this site that people are able to eat relatively normally again eventually, so it does give hope...keep us posted on your progress.

    Thanks for your response...Sounds like you've gone through a terrible ordeal! I, too, continue to read this site for encouragement and hope. Let's be hopeful together that we WILL eat again someday!
  • TereB
    TereB Member Posts: 286 Member
    Hi,
    I knew someone who had a tumor removed from the neck area and she had trouble swallowing; this was maybe five years ago. I do remember her oncologist and another doctor showed her some exercises to aid in swallowing, ways to practice taking small sips of water or small bits of food and it helped her a lot. Ask your doctor, maybe there is someone there who knows about this type of therapy.
    All the best,
  • noeescamilla
    noeescamilla Member Posts: 2
    I am past all my treatments and surgery in my throat for three months and I too have issues placing food down my throat. I also do not eat at restaurants because it takes me about an hour to eat two over easy eggs, and some solid foods even longer. It is always with a cup of water in my hand to aid me in swallowing better. It is not a pretty sight as I am the one who is used to finishing first at the dinner table now I am overlapping into other meals.
  • 3_Putt
    3_Putt Member Posts: 18

    I am past all my treatments and surgery in my throat for three months and I too have issues placing food down my throat. I also do not eat at restaurants because it takes me about an hour to eat two over easy eggs, and some solid foods even longer. It is always with a cup of water in my hand to aid me in swallowing better. It is not a pretty sight as I am the one who is used to finishing first at the dinner table now I am overlapping into other meals.

    noeescamilla, it was exactly the same for me. It WILL get better. About the six month mark is when I really started improving. By eight months I was back to being the first one done again :)

    Now I've got another problem. I've put back on 50 of the 60 pounds I lost.
  • cuzzy
    cuzzy Member Posts: 15
    I am so glad to hear that I am not alone with swallowing problems. I am just six months post surgery and three months post treatment and I have not eaten in front of anyone but my husband since May (and our grown daughter when she came to help). We are invited to our son's for Thanksgiving and have told them we will come for a couple of hours but won't stay for dinner. Restaurants? HA!!! I am able to eat very small quantities of solid foods, but the time of day (morning is best) and type of food is important...I practically survive on Ensure and smoothies and am sick of them. So hopefully, by six months, I will be able to look forward to some improvement. I used to also be the first one finished...and able to eat like a lumberjack...now my mealtimes overlap and I find myself looking at the clock and thinking, "oh drat, it's time to eat again."
  • soccerfreaks
    soccerfreaks Member Posts: 2,788 Member
    cuzzy said:

    I am so glad to hear that I am not alone with swallowing problems. I am just six months post surgery and three months post treatment and I have not eaten in front of anyone but my husband since May (and our grown daughter when she came to help). We are invited to our son's for Thanksgiving and have told them we will come for a couple of hours but won't stay for dinner. Restaurants? HA!!! I am able to eat very small quantities of solid foods, but the time of day (morning is best) and type of food is important...I practically survive on Ensure and smoothies and am sick of them. So hopefully, by six months, I will be able to look forward to some improvement. I used to also be the first one finished...and able to eat like a lumberjack...now my mealtimes overlap and I find myself looking at the clock and thinking, "oh drat, it's time to eat again."

    cuzzy: I empathize with you. I am a two year survivor of head and neck cancer, had half of my tongue replaced, blah blah...and read this response of yours with perfect understanding.

    I have tried to go to restaurants to eat, I have tried to go to restaurants to talk while those with me ate, and I know that it can be pure torture.

    The same goes for holidays.

    BUT...I would advise you strongly to participate in these dinners with your family. You can eat before they do, if necessary, and simply sit with them and drink tea or water or whatever. I am a bad one to express this, because I find it excruciating to sit there and do this, but I am certain that the value for you and your family will be in your being there to share in conversation and memories and laughter.

    Yes, eating is so important to our social lives that we take it for granted until it is an issue for us; on the other hand, it is merely an ostensible reason to get together: the real reason is to be together.

    I now wonder how much I have missed by avoiding these opportunities to be with my family.

    Restaurants: Out. For now. Holiday dinners at home: In.

    Please reconsider, for your welfare and for the benefit of your family and friends.

    Take care.
  • Beejoo3
    Beejoo3 Member Posts: 6
    I had therapy for swallowing issues. She gave me a number of exercises as well as putting lemon swabs down the throat to induce swallowing - perhaps you should think about this if you have not done so.
  • aisha
    aisha Member Posts: 8
    Beejoo3 said:

    I had therapy for swallowing issues. She gave me a number of exercises as well as putting lemon swabs down the throat to induce swallowing - perhaps you should think about this if you have not done so.

    Swallowing

    what do you mean By lemon swabs?

  • aisha
    aisha Member Posts: 8
    Swallowing exercise

    These are the exercise I do for my swallowing. Give it a try it might help.

     

    To increase/maintain jaw and oral tongue movement and strength:

     1: Open your mouth wide and comfortable as you can and then relax. Repeat 10x

    2: Alternate moving your jaw from left to right. Repeat 10x

    3: Puff your cheeks with air and hold for 5seconds. Repeat 5 x

    4: Stick your tongue out straight and hold it between your lips as long as you can.   Repeat 5x

    5: Alternate between sticking out your tongue and pulling it back in. Repeat 5x

    6: Stick out your tongue and move it side to side. Repeat 5x

    7: Stick out your tongue and move it up to your nose and down to your chin. Repeat  5x.

     To increase tongue strength:

     1: Press the tip of your tongue against a tongue depressor or a spoon.

     To increase posterior tongue base movement:

     As you swallow, squeeze hard with all your throat muscles. 

    Tongue Base Retraction Exercise 5x Each

     1: Pull the back of your tongue to the back of your mouth and hold.

    2: Pull your tongue back during a yawn and hold

    3: Pull your tongue back during a gargle and hold.

     To increase Phrangeal wall excursion

    Masako Maneuver 5x 

     1: Stick your tongue out and hold it between your teeth

    2: Try to stick your tongue out further and further while you hold it between your teeth and swallow

    Note: do this with nothing in your mouth

     Mendelssohn maneuver

     

    Swallow several times and pay attention to your neck as you swallow. Focus on the feeling that something lifts and lowers as you swallow.( You should feel tha in the middle of the swallow everything squeezes together at the top of your throat). Now, this time, when you swallow and you feel something lift as you swallow , don't let it drop. Hold it up with your muscles for several seconds. 

  • aisha said:

    Swallowing

    what do you mean By lemon swabs?

    Lemon swabs are shaped liked

    Lemon swabs are shaped liked giant cotton buds! each one comes in an individual foil packet which contains like a moist lemon substance. We have them at work for patients who are close to death to moisten their mouths (I'm a nurse). The only other time I've seen then was after my surgery. They are very soft and refreshing but don't sting. 

  • aisha said:

    Swallowing exercise

    These are the exercise I do for my swallowing. Give it a try it might help.

     

    To increase/maintain jaw and oral tongue movement and strength:

     1: Open your mouth wide and comfortable as you can and then relax. Repeat 10x

    2: Alternate moving your jaw from left to right. Repeat 10x

    3: Puff your cheeks with air and hold for 5seconds. Repeat 5 x

    4: Stick your tongue out straight and hold it between your lips as long as you can.   Repeat 5x

    5: Alternate between sticking out your tongue and pulling it back in. Repeat 5x

    6: Stick out your tongue and move it side to side. Repeat 5x

    7: Stick out your tongue and move it up to your nose and down to your chin. Repeat  5x.

     To increase tongue strength:

     1: Press the tip of your tongue against a tongue depressor or a spoon.

     To increase posterior tongue base movement:

     As you swallow, squeeze hard with all your throat muscles. 

    Tongue Base Retraction Exercise 5x Each

     1: Pull the back of your tongue to the back of your mouth and hold.

    2: Pull your tongue back during a yawn and hold

    3: Pull your tongue back during a gargle and hold.

     To increase Phrangeal wall excursion

    Masako Maneuver 5x 

     1: Stick your tongue out and hold it between your teeth

    2: Try to stick your tongue out further and further while you hold it between your teeth and swallow

    Note: do this with nothing in your mouth

     Mendelssohn maneuver

     

    Swallow several times and pay attention to your neck as you swallow. Focus on the feeling that something lifts and lowers as you swallow.( You should feel tha in the middle of the swallow everything squeezes together at the top of your throat). Now, this time, when you swallow and you feel something lift as you swallow , don't let it drop. Hold it up with your muscles for several seconds. 

    My lemon swabs reply is up

    My lemon swabs reply is up above this post lol