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Swallowing exercises

rachel12yrsuv's picture
rachel12yrsuv
Posts: 432
Joined: Feb 2013

EVERYONE GOING THROUGH OR ABOUT TO BEGIN TX:

I know its beat in your head, but I'm gonna beat it some more:

DO YOUR EXERCISES OR YOU WILL SUFFER CONSEQUENCES

If these had been available to me 12 yrs ago more than 85% of my problems wouldn't exist, and 1 may not exist. My head moves and turns like the worst stiff neck you've ever had(doesn't feel like that, just looks like that), of course I may have avoided the Dysphagia and Aspiration pnuemonia and still enjoying food, I would definitely be able to open my mouth wider than 1 finger(middle) and one tip of finger(pointer), dental issues that you all will deal with but easier for you do to mouth opening.

You don't want to have to live like this, I have grown acustom to it and long ago accepted it, but now I am trying to fight to reverse what you all can avoid. So please, there is so much advice we all give, like fluids, fluids, fluids(very important to during tx) but if you heed only one:

DO YOUR SWALLOW EXERCISES!!!!!!!!!!

Getting off my pedastool now, someone elses turn

Love to all and God Bless,

Rachel

wolfen's picture
wolfen
Posts: 1194
Joined: Apr 2009

My hubby has not reached the point of H&N rads or possible surgery yet, which is when I assume swallowing exercises will be mentioned. He can still drink things like Glucerna or milk, things that are thicker than water. Only drinks a small amt. of water with his meds as water tends to go back up his nose. But I am constanly stressing the fact that he needs to swallow for as long as possible. So I will drum this info. about swallowing exercises into his head also.

Luv,

Wolfen

Billie67's picture
Billie67
Posts: 834
Joined: Jul 2012

You are so right! I'm thankful that I've done the exercises all thru trt and continue to do them now. It's not easy and I do have some things that are more difficult than others to swallow but I'm working on it. Just saw my ENT/surgeon today and it's possible after seeing the cd from my last swallow study that I may have To have some dilation done too. Regardless, I will keep up on my exercises.

Wolfen,

Swallowing is important but right now your hubby needs to do his opening exercises so he doesn't get trismus. It can show up out of the clear blue and some who get it can't get back to where they were before treatment. People literally feel fine one day and the next day can't open their mouths, no warning.
There, I've given my friendly lecture :-)
Billie

phrannie51's picture
phrannie51
Posts: 3744
Joined: Mar 2012

My Dr.'s did not say one word about swallowing exercises....nor did they mention the neck and jaw exercises until I brought them up to the Radiology PA....She was a barrel of information, but not until I said something.  I learned about them on HERE first....and that's why I brought it up to her....my jaw was getting tight. 

It just seems that there are so many facets to radiatinon and the possible ramifications, that the Dr.'s either forget to mention things, or it may be that some simply don't know.

p

 

wolfen's picture
wolfen
Posts: 1194
Joined: Apr 2009

Like Phrannie, none of the doctors that he sees have mentioned any kind of exercises. Will check this out at next appt.

Luv,

Wolfen

CivilMatt's picture
CivilMatt
Posts: 2982
Joined: May 2012

Hi Rachel,

 

So you are still learning, me too.

 

Before I started treatments my wife Candy found this site and filled me to the brim with information (Skiffin and other “wise ones” have been busy dispensing the abc for fighting cancer).  The three main things I took away were:

  1. drink water, drink water, drink water, stay hydrated.  I started drinking water a good month before treatment started and I haven’t stopped.  There better be a pay off to all this drinking, besides a stronger bladder.
  2. swallow, swallow, swallow.  My sips and swallows got pretty small, but I kept at it.  Also, having the swish and spit (water, soda salt mixture), along with my favorite gag and dry heave utility room sink helped too.  Caregivers are the saints around us, no normal person could stand to listen without dialing 911.
  3. The third is kind of corny, I was afraid if I lost too much weight I would have to get fitted for a new mask.  There are rumors that it happens, but I never met anyone who lost so much weight their head wobbled around in the mask.  If anything my nose is now flatter than it was.  I know my teeth don’t clamp together exactly like before.

 

So all you newbies, listen to Rachel she is on to something.  Additionally, a big shout out thanks to all the ‘wise ones” who traveled this road earlier, I have read many of your threads and take your advice to heart and hope you are all well.

 

Matt

 

I lost 45 pounds.

peggylulu's picture
peggylulu
Posts: 367
Joined: Dec 2012

Well Matt now you have met someone who's head wobbled around in their mask ! They talked about making me a new mask but never did . I don't know why they didn't . I too worried that I would lose so much weight that they would have to make me a new one and I did but they didn't ! Lol The last 2 weeks I just had to make sure to lie very still. I had probably lost around 45 or 50 pounds at that time . I have lost another 15 to 20 pounds since tx but I had it to lose. Hope I can lose 20 more while nothing taste good and then hope I get my taste back and not the weight . Wink

Peggy

Billie67's picture
Billie67
Posts: 834
Joined: Jul 2012

I too got pretty wobbly in my mask and they said if I lost even another pound they were going to make me a new one. I could move my head around pretty good and I was also scared that the wrong stuff might start getting radiated. I did end up losing a couple more pounds but I was so close to the end that they let me slide but told me to hold very still. They told me that about 20% of their patients need a new mask before treatment is over.
Just thought I'd share :-)
Billie

peggylulu's picture
peggylulu
Posts: 367
Joined: Dec 2012

Thanks for the reply , that sounds exactly like the way it went with me !! It's nice to know I'm not the only one and I too was so worried that I might not be getting the right tx !

Peggy

yensid683
Posts: 232
Joined: Apr 2012

Rachel, you are SO very RIGHT!!!!

I'm but 8 months post rads and remember my wife brow beating me about swallowing, at times it seemed that she was more drill sargeant than supporting wife and caregiver, but she kept after me, "do you want that PEG tube forever?"  Like Phrannie though, none of my doctors said ANYTHING about swallowing or jaw exercises.  I had to learn it from people on this site, from friends and neighbors who had relatives ride this bus.  Hell, it was almost 3 weeks into rads before they sent me for a swallowing study.  The speech therapist said that I was doing everything exactly right, thanks to my long suffering and incredibly patient wife.

there were times when I could barely stand to swallow, water, milk, a spoon or two of grape jello (the only flavor that I could stand) but I kept at it.  At this point, I can swallow just about anything, I've gotten all of my taste back, though sour and bitter are still intense - a consequence of the very low saliva - but I can eat!!!!

I do stretches for my neck dissection (mid october) and do the 'open wide' as well.  There has always been a slight stiff feeling in the jaw muscles, but the stretching helps. 

Thanks for the reminders, while I feel so bad for you, I'm glad that I listened to my Lori. 

 

Peter

George_Baltimore's picture
George_Baltimore
Posts: 303
Joined: Jun 2009

whose head wobbled.  I went from 220 down to 129.  I read some of my docs notes that said I was down to 119 but I don't ever remember it  being that low so it may have been a typo.  They never made another mask but you can bet, I laid perfectly still during the rads.

peggylulu's picture
peggylulu
Posts: 367
Joined: Dec 2012

Wow that is a lot of weight to loose ! I have lost 65 and thought that was a lot ! Have you been able to gain some of it back ? I tried to lay perfectly still also but it made me so nervous with all the mucus I always felt that I just HAD to swallow ! I hope I don't gain the weight back because I really needed to loose some weight for the last 50 years !

Peggy

fishmanpa's picture
fishmanpa
Posts: 1113
Joined: Jan 2013

I went to the Speech/Language Pathologist today and was evaluated. There are some remaining swallowing issues from the surgery (neck and shoulder too which will need PT). I was given the swallowing exercises as well as jaw stetches etc. Dang! Some of the swallowing exercises are hard! But regardless, I'll be doing them religiously.  

Keep up the hard work Rachel... if you can do it with the challenge you had in front of you, then anyone can :)

"T"

debbiejeanne's picture
debbiejeanne
Posts: 2454
Joined: Jan 2010

T, may i ask what kind of problems u r having with your shoulder?  When my cancer recurred and i had to have neck surgery, (laryenjectomy) my shoulders have been messed up.  i am unable to lift them very high and need help with dressing and showers.  i attended pt for a couple months twice a week but was told they could do no more.  i continue  to do the exercises at home b/c i don't want to give up on my arms.  i was told i have permanent nerve damage to the scapula but still i refuse to give up.  i'm just wondering if this is the same problems your r having.  thanks for sharing.

God bless

deb

fishmanpa's picture
fishmanpa
Posts: 1113
Joined: Jan 2013

Hi Deb,

Sorry to hear you're having shoulder issues. I can sympathize. I had a selective neck dissection, left side. I have weakness in my left arm and shoulder that, like yourself, makes it difficult to raise my left arm without pain. It's as if the muscles have been disconnected. If I shrug my shoulders you can see a distinct difference in the way my traps contract. It's as if my left trap doesn't work. While it was getting a little better, it's now backslid since I started treatment. My neck muscles are stiffining up a bit and I developed a very sharp burning/stabbing pain in my left sholder blade area. They want to get me into physical therapy so I can continue to work the area through treatment. 

It does sound similar to what you're experiencing but my ENT/Surgical Oncologist feels it will come back in time. Time and effort will tell.

"T"

debbiejeanne's picture
debbiejeanne
Posts: 2454
Joined: Jan 2010

T, thank you for sharing.  I pray your movement will return completely.  I keep hoping that as i exercise at home mine will get better. I don't have any pain, I just have the lack of mobility.  My neck is also affected.  This happened when they did my neck surgery.  they damaged the nerve.  keep up the good work and good luck with Pt.  take care and thanks again.

God bless,

deb

peggylulu's picture
peggylulu
Posts: 367
Joined: Dec 2012

I'm beginning to think this must happen most of the time because I have most of the same issues that you are having . I lost so much weight so fast that my shoulder on the side of my surgery feels like there is nothing there but skin and bones . :(

Peggy

debbiejeanne's picture
debbiejeanne
Posts: 2454
Joined: Jan 2010

peggy, i'm sorry to hear you are also having troubles.  i pray it won't be permanent.  thanks for sharing.

God bless,

deb

rachel12yrsuv's picture
rachel12yrsuv
Posts: 432
Joined: Feb 2013

Deb and T,

My shoulder, right side, is bad. When I am in shower I have to climb the wall with my hand to shave my under arms. Getting dressed not so much, but I try to put hair in pony tail and that takes like 5 mins instead of couple and curling my hair when doing right side have to rest my elbow on wall. The new exercises for speech are helping. The ones to stretch the cervical, you are supposed to lay on. Flat surface, but I can't lay down for hour after eating by peg so sometimes I do them sitting up and when I reach around head and pull to shoulder, when I put arm down to switch sides it cracks all the way down, and I have noticed a little more movement in shoulder with that release. So try that sitting up once in a while, it works.

As far as weight goes I lost 70lbs in 9 months of treatment, and sad to say once I figured out how to eat I slowly put it back on. First, when you body is in starvation. Mode like mine was due to severe food aversion, when you start eating as a defense your body stores as fat in case you starve again, and then the rest was bad marriage and depression thinking I was stuck. I have since lost 320lbs, well 260 belong too ex husband, and 60 to me! So be careful when you eat normal. Eat well, not what's there. Just a tip!

Take care,

Rachel

T, hang in there praying everyday for you, no negative thoughts like what happens after initally winning, you start "Living" that's what you told me!

rachel12yrsuv's picture
rachel12yrsuv
Posts: 432
Joined: Feb 2013

Deb and T,

My shoulder, right side, is bad. When I am in shower I have to climb the wall with my hand to shave my under arms. Getting dressed not so much, but I try to put hair in pony tail and that takes like 5 mins instead of couple and curling my hair when doing right side have to rest my elbow on wall. The new exercises for speech are helping. The ones to stretch the cervical, you are supposed to lay on. Flat surface, but I can't lay down for hour after eating by peg so sometimes I do them sitting up and when I reach around head and pull to shoulder, when I put arm down to switch sides it cracks all the way down, and I have noticed a little more movement in shoulder with that release. So try that sitting up once in a while, it works.

As far as weight goes I lost 70lbs in 9 months of treatment, and sad to say once I figured out how to eat I slowly put it back on. First, when you body is in starvation. Mode like mine was due to severe food aversion, when you start eating as a defense your body stores as fat in case you starve again, and then the rest was bad marriage and depression thinking I was stuck. I have since lost 320lbs, well 260 belong too ex husband, and 60 to me! So be careful when you eat normal. Eat well, not what's there. Just a tip!

Take care,

Rachel

T, hang in there praying everyday for you, no negative thoughts like what happens after initally winning, you start "Living" that's what you told me!

peggylulu's picture
peggylulu
Posts: 367
Joined: Dec 2012

I have the same problem with right arm . It is very hard to do anything with my hair and even hard to eat. Same problem in shower. Has your arm/shoulder been like this for 12 years ?

Peggy

rachel12yrsuv's picture
rachel12yrsuv
Posts: 432
Joined: Feb 2013

Peggy,

I wish I could tell you no, but yes, from the time I remember after tx(I blocked so much, there are events in tx I must have chose to block away, even if my family tells me I hve no recollection of it. The mind is powerful) till now my shoulder has been like this. It used to hurt from time to time, but I have since gotten used to it. However, I am sure a lot of it and other side effects that I live with, are my fault. I was so afraid of doctors and hospitals, especially the one I was treated at, if I see it still today my insides shake. I did what I had to do and didn't look back. If I would have pursued these issues I may have been able to get ahead of them, therefore suffering less pain as I try to reverse them. I have noone to blame but myself. That. Is the reason I started this thread. I want you all to exercise so you don't need a feeding tube at 12yrs like me and even though its working, try to reverse the damage. That is why I am telling you all to give your fears to God and go on with whatever you have to face, its somewhat selfish, its kind of therapy for me while I do that as well in this recent chapter of my life after "slim fast".

Much love to you all,

Rachel

peggylulu's picture
peggylulu
Posts: 367
Joined: Dec 2012

I had to ask for PT and then I didn't go during treatments as I didn't have the energy . I however did go a few weeks after treatment when I got my strength back. Here's hoping you will do better by going to PT during treatments.

lorig01
Posts: 69
Joined: Jul 2012

Hi.  I was not referred to a swallowing therapist after treatment. My dentist was the one , (along with folks on this site), that said to practise everyday opening mounth wide and to the sides several times a day.  I also read on this site that you should practise putting your tongue between your teeth and swallowing.  Are these the excercises that you are referring to?  Are there any other things that you are doing that everyone should be doing?  Your comments about swallowing excercises have really got my attention as I have been really depressed about my difficulty eating. I can swallow but I just got my permanent dentures and lack of saliva and taste are making eating really unpleasant.  In the last few days I have made some progress as my taste is waking up and I am almost starting to enjoy some foods. I can't believe how much this "small" thing has improved my attitude! So, now more then ever I would like to maintain what I have. Any help would be much appreciated.  Thanks, Lori

rachel12yrsuv's picture
rachel12yrsuv
Posts: 432
Joined: Feb 2013

Lori,

When I first came on here it seemed that you all where being told, since I started this its not the case. Yes the exercises you are doinging is a part of it. If I can figure out via phone how to show you them all I will, you don't want to loose that ability especially with the dry mouth. When first done I learned to drink water(once it stopped tasting like salt, lol) to help break down and swallow food. Your taste buds will come backand may be different. You may like things you never did before and hate things you used to love, its like a new birth. But watch, that food grabs on, and eventually if not careful that weight will climb. I myself still have some real teeth, have to finish getting them out, my dentist refuses dentures and will only help me with implants, which 1 I can't afford and 2 don't want. So must find new dentist.

Feel free to ask anything inregards to new life and ill help best I can, I have to get hair cut, if didn't yet that grows all back too!) Then I will try to post these exercises on here. They are from St. Mary medical center in middletown township pa I don't know if they have website that shows them. Ill check when I get home.

Keep up good work Lori,

Rachel

lorig01
Posts: 69
Joined: Jul 2012

Thanks for responding.   I would love to see the exercises.  I saw your comment on dentures and wanted you to know that there is a middle ground. I have implanted dentures.  They put 4 posts in gum on top and bottom and then you have dentures that are "snapped" in.  They are supposed to make eating easier than traditional dentures and they stay put and don't move or float. I am still trying to get used to them.  You may want to ask about those. They are a lot cheaper then getting individual implanted teeth. 

 

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