Urgent question - Help!

Suez39

Hi all H&N members:

I'm 6 weeks post treatment and I still have bad throat pain where I can barely get a trickle of water down and can't eat soft foods. The speech therapist said if I don't eat and drink Now I will have my feeding tube forever. Because my throat muscles need to be excersized. Is this true? When I try to swallow most of the time I cough and it brings up the lovely mucuos. Ugh... Unfortunately I am 100% dependent on my tube because I cant use my throat yet. Did any of you have this problem? If so can you let me know what to do? The nurses and speech therapist have'nt got a Clue as to how much pain I'm in. My throat has a stinging burning feeling and without my pain med - oxy codon I don't know how I would even sleep. Thank you all for taking the time to read this and I appreciate very much the feedback you give me. Hugs to you all!!!

debbiel0

Exercises, Exercises,

Exercises, Exercises, Exercises.. keep up with those throat and neck exercises. They are very important!

I also had a hard time. I was not given the OK to have anything by mouth ( not even an ice chip) for over 10 weeks! I was given exercises to do by my speech therapist, before my treatment even started, as long as I did those diligently two - five times a day, she was happy. I also needed my pain meds the whole time.  I am one year (Yesterday) from my first treatment, and still do my exercises daily. If I don't my jaw and neck muscles seem to cramp up.

When I was given the OK to start food by mouth, my speech therapist tested me with different foods and she gave the ok for liquids and applesauce and jello. It took about two weeks of that diet, along with my feeding tube before I stopped gagging with every swallow and the pain subsided enought to start cutting back on the meds.

I started with lukewarm tea with lots of greek honey, one cup would last me all day. A 1/4 cup of jello would take me two days to get down.

It does get better! I know the team is trying to push you through this, that is their job. Take their advice, and adapt it to what works for you. You will get through this.

Hope this helps a little.

Deb

 

 

 

bugsyboy

Magic Mouthwash

Exercise like Deb said.  I'm almost four years since my last treatment, and I still do my neck exercises.

Did your doctor prescribe magic mouthwash?  It's a rinse and swallow that numbs and soothes your mouth and throat and may allow you to begin swallowing liquids and soft foods.  Even if you cannot begin swallowing, it will allow you to get some pain relief.

Best of luck.

Bugsy

OKCnative

While I refused the PEG tube,

While I refused the PEG tube, I befriended many people who had one and my doctors constantly reminded me when I went to liquids-only that I had to continue to exercise my throat muscles or I would loose use of my throat.

I understand the pain. I'd literally cough up bloody bits of throat tissue and my wife had to go outside when I took in calories because I'd cry and scream out loud. I had BOT SCC and found that magic mouthwash and even hydro offered zero relief. I quickly rejected opioids too and relied on recreational grade THC. It greatly aided in my ability to eat. Not that the pain went away, but it greatly reduced my anxiety over eating. I also did a lot of meditation exercises (I learned off YouTube videos) to keep myself calm and to allow myself to endure the pain. I simply had to come to the realization this was going to hurt more than anything I've ever experienced, but, the end result would be worth it.

Good luck to you.

wbcgaruss

In Agreement

I am in agreement with all the commentaries I had similar circumstances.

I was given a speech therapist which also does swallowing and maybe some other things from the start.

Before I started chemo or rads or just shortly after.

They stressed from the start that if you quit swallowing because you can't eat and are on a feeding tube anyway

You will lose the ability to swallow and will have to learn it all over again.

They gave me exercises like many of the others here.

One I remember is to hold the tip of your tongue between your teeth and keep it there while swallowing or basically simulating swallowing.

It makes you throat muscles work just as if you are swallowing.

Make sure you have pain meds and stay on top of it just take them regularly for pain management.

Make sure you are communicating with them how painful it is.

Maybe they have some solution.

And some of it is you will have to push yourself hard to get through this hump.

This may be the hardest thing you ever do but push on and do your best.

Prayers your way and God Bless

Klingels

Eating

My husband quit swallowing too. The pain was just too great. He was also threatened with if you don't use it, you will lose the ability to swallow. He didn't. He swallows just fine now. He had a hard time for a long while. He used the PEG tube for everything even medicines for awhile. I think there was one pill he had to swallow as he wasn't supposed to crush it. The eating came back little by little. He was on a PEG tube for 8 months. He couldn't swallow anything at all for about 2 maybe 2 and a half months.

SuzJ

I never had a tube, I refused

I never had a tube, I refused every time they threatened me...

I would try and sing loudly in the car (turn the music up)  to anything.. I would sing the alphabet, and do my A - E - I - O - U 's...

Never stopped swallowing, I used lidocaine before meals, and as little pain meds as possible (I did most of all the treatment on Tylenol) Oxy only the 3 weeks after I finished.

 

You HAVE to do the exercises the speech therapy people give you, Hard Swallow, is literally a "Gulp" 3 or 4 sets of 10

 

I also found losing the lymphedema helped with making room to get stuff down. I was very swollen for a long time after, so I lived on boost for the longest time.