Swallowing exercises

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

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

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.

CivilMatt said:

I hear you

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.

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 .

Peggy

yensid683 said:

Amen!

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

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.

fishmanpa said:

These things ain't easy!

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"

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 said:

Shoulder Issues

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"

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

debbiejeanne said:

T, thank you for sharing.  I

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

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

George_Baltimore said:

Matt, make that three people

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.

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