Hi all!

My husband's neck dissection last week went well, and the pathology report was great - he had had (prior to chemo and radiation) a 6cm tumor in one node and at least one other cancerous node, but after chemo and radiation - no positive nodes! They found a tiny spot (4mm) that still had viable cancer in the residual tissue which they removed but overall were THRILLED with his response to the treatment.
That said - this is his second neck dissection, and this one came with a problem we did not have before. Swallowing. After all he has gone through, he finally relented and had a tube put in yesterday. They did do some damage to the spinal accessory nerve, so his tongue goes to one side, and this is what seems to be the issue. Anyone have any experience how long this lasts? Will he be allowed to eat while on the peg tube?

Hi Angie, Sorry that you have to deal with this again. I too have nerve damage (the result of surgery) which renders 1/2 of my tongue non-functional. That part will likely not ever get better.

He over time and perhaps with some swallowing therapy be able to swallow just fine. I would urge you to seek swallowing therapy right away.

Yes he can eat by mouth while using a PEG tube

Angie

As a new PEG booster, not only can your husband eat when he can finally swallow while he has the PEG tube, he can also:
DRINK WINE THRU THE PEG. Doublecheck with your doctors of course, but mine are bemused. they all agree no alcohol this time around in my mouth unlike last time, because of the surgery but directly into the stomach: no problem. That should help a little - I feel almost normal being able to do a "happy hour" again. (although I do limit myself to one syringe a day)
c�harm

Since we're on the topic of the PEG, I have a question.
I've not started radiation as yet, but my chemo mouth makes impossible to eat solid food. It only lasts a few days, but it makes me appreciate what will happen when I go into radiation. Presently only chocolate takes good, and since I've gone through this 3 times, Carnation Instanst and Ensure are getting quite boring. I'm hungry but (1) I don't feel satisfied on a liquid diet and (2) everything doesn't take quite the same, (3) I never feel full.

I'm look for more foods/and food tricks people have used to eat orally during radiation. I don't want to use the PEG for everything. How do you get your nutrition. Potatoes are most carbo. Pumpkin pie and sweet potatoes have a lot of sugar. How does everyone get their protein other than a protein mix?
Any food ideas??????

Thank you
Sandy

Angie,
I had a my bi-lateral neck dissection on Mar 2. I have not been able to swallow right since. I also am having problems chewing, from the swelling (lymphedema). I have spoken to my RO he has ordered speech/swallowing and lymphedema therapy. I hope to start next week. I'm just waiting for a phone call. I go to a H&N support group, the leader is a speech therapist, I am going to copy our email conversation from this weekend. I assume you/he have the same question I did.
Hope it helps

Shannon,
I was just wondering. I know everyone is different, but can you give me the average time it takes to get someone to swallow the right way again. Are we talking weeks or months or years?

Thanks
Amy

It does vary.
Most individuals who end up being able to eat by mouth still say it's not completely "normal".
The earlier you get into treatment, the better and faster your recovery.
I would think maybe 6 months for you.
You can expect many improvements, but then set-backs often occur.
The first 3-6 months post-radiation is the toughest.
The key is staying positive, proactive, and consistent in your therapy and your therapist's recommendations.
I think you're going to do well!!

Bummer, I wanna eat some real food.
Oh well, I will do whatever it takes.

There will be limitations and you'll be able to swallow some textures/consistencies easier than others.
Most complain about the dry mouth.
Youll make quick progress and should be able to swallow "more normal" foods over the next few weeks.
If you heal nicely and don't suffer from excess secretions, mucositis, sores, or infection then the progress will be quicker.
It's usually less about the swallowing function, per se, and more about the side affects of the radiation and how they hinder swallowing.
Just keep that positive attitude of yours!

Sandy, go buy a blender if you don't already have one, and try anything that is tempting. Most if not all meats are out for sure. I found that if it sounds workable, try it. It's about a 70 - 30 proposition but I sure use mine.

Sandy---I ate salads with chicken cut up really small with TONS of dressing. Lots of scrambled eggs. Yogurt. Tuna salad(no bread) with extra mayo. I did not use my PEG, but rather drank the nasty Nutrin(yuk). I always ate some real food--no matter how little---at each meal time.

Nutren is a lot better with some Nestle's Nesquik mixed with it in a glass -- Boosts the calories by 60.

Some easy foods to eat:

soft scrambled eggs with cheese
poached eggs
yogurt
pudding
cheesecake
milkshakes (I used to drink choc/peanutbutter milkshakes daily)
baked beans mashed up like mashed potatoes
mashed potatoes
mashed sweetpotatoes
chicken and stars soup
wonton soup
french onion soup
pancakes w/ real maple syrup or smucker's blueberry syrup
french toast
canned carrots
peas or green beans mashed
glazed carrots
cottage cheese
buttered soft, fresh white bread with jelly
soft serve ice cream
applesauce

To help balance your diet, add to milkshakes, add a scoop of dry carnation instant breakfast

This has been my diet for a long time, seems like forever.

Looks like you covered all of the bases Christine. I think wse should combine our talents and write a cook book. LOL I laugh but am serious