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A question about swallowing....

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

I want to bounce this off the group.

Last weeks surgery makes it two tonsillectomies I've had in 3 months. The first (Dec. 21st) they removed the palatine tonsils. The standard get your tonsils out tonsils. Along with that they did biopsies of the BOT and nasopharygnx and a laryngoscopy. That, for lack of a better word, sucked! The pain was excruciating at times. Eating and drinking was extremely unpleasent. It was a good two weeks before I had any sense of things returning to normal.

Just when it did, I have the neck dissection, a bi-lateral lingual tonsillectomy, more BOT biopsies and another laryngoscopy (Feb. 7th). I came out hurting pretty bad but just like the first time, it wasn't until day 4 that the discomfort really kicked in. Now, add to everything, traumatized nerves, numbness and a tongue I knew and saw worked but couldn't feel. Last weekend I was able to take my meds by mouth. I sort of gauged how far back I was pushing the pill, took a sip of water and threw it back down my throat. Prior to day 4, I was able to eat, not without discomfort, but soups with soft veggies and such went down Ok. 

By Monday, the pain had increased substantionally. I couldn't get the pills to go down. I spoke with my surgeon Monday evening and he suggested smashing them and mixing with apple sauce, pudding or my all time favorite, Cream of Wheat, That went Ok until Wednesday night. By Thursday, the pain associated with the apple sauce and pudding was unbearable. Perhaps it was the sweetness, who knows. Anyway, Cream of Wheat was the only way I could get anything in me. Drinking has become increasingly difficult and an unpleasent chore. It's not just the pain, it's a feeling like I swallow and there's a bit left over pooling in the back of my throat. It happens when I take the liquid pain meds too. It's kind of like a short choking sensation. 

Bottom line, it's so uncomfortable that I know I'm not getting enough fluids or nutrients into my body. Finally, late this afternoon, I made a smoothie (protein powder, milk, banana etc.), about 20 or so ounces. I mixed my meds into that and was able to choke that down. It took a while but I did it. I feel much better getting something nutritious into me.

So, those of you that had similar surgeries, did you experience what I'm describing? How long did it take until you turned the corner on that? I'll be seeing the Dr. on Monday and I'll run this by him but it seems it's progressively gotten worse, not better. Mind you, I'm 9 days out.

Also, I've read dozens of posts concerning the sore throat pain of rads. Those that have had the tonsillectomies and then rads, what's the pain comparison? Is my throat going to be hurting this bad when I get into the meat of the treatment and afterwards? Because I'll tell you, if that's the case, I will seriously consider getting the PEG put in prior to starting treatment. Eating and drinking has been so unpleasent that I can see why swallowing becomes an issue. My main concern at this point is some nerve damage was done when they did the tonsillectomy. Everything I've read an everything the doctors are telling me says that it will get better but my Oxy clouded brain won't let that go and I'm reminded with every sip of water I take.

Your wisdom, knowledge and experience welcome ;)

"T"  

CivilMatt's picture
CivilMatt
Posts: 2965
Joined: May 2012

T,

 

While I went through a time of difficult swallowing along with sore mouth, tongue and throat, I never forgot to drink water and swallow.  Reading the H&N threads had me convinced that the one thing I could do which would pay the biggest dividends was hydration and swallowing.  Of course during the most painful times I was the slowest, but it does get better and I fully credit the H&N gang for my success.

 

I did have BOT surgery, but nothing as in-depth as yours.  You must devise your own methods for dealing with these road blocks, be it with pain pills, mouth washes, creams, etc.  Take advantage of all your resources.  Do not let yourself fall victim to malnutrition or dehydration, these are preventable and being strong in body and mind are your first line of defense.

 

Good luck,

 

Matt

phrannie51's picture
phrannie51
Posts: 3730
Joined: Mar 2012

I put that in quotations only because your throat isn't being very friendly right now.  Personnally, I'd think hard about getting a PEG before treatments start....it's such minor surgery, and I just can't fathom them sticking a tube down my throat to my stomach once radiation starts.  Not only is your throat sore, but you feel like crap much of the time.  Swallowing something everyday isn't so tough, when you know you can get the majority of what you need via the tube....like 95% if all hydration and nutritian.....with just small sips of water through out the day....now that makes swallowing a lot friendlier :).

p

alligatorpointer's picture
alligatorpointer
Posts: 131
Joined: Jul 2012

From what I witnessed as a caregiver, I cannot imagine maintaining a healthy nutritional status through the long weeks of radiation/chemo without the benefit of having a PEG put in before starting treatments.  You will still need to force yourself to sip water as often as you can each day to keep your swallowing ability functional during treatment even when eating is too difficult.  But you can use the PEG to get in the high number of calories needed to maintain your weight and give your body the nutrition it needs to fight.  My son had the chemo port and the PEG put in at the same time.  He was very glad he had both of them.  He also needed gasX for an episode of painful bloating, colace (stool softener), and milk of magnesia for minor constipation associated with pain meds.  It is a good idea to have those kinds of over-the-counter items on hand ahead of time since they are not very expensive and pre-purchase saves making a trip to the store in the middle of the night or when you are not feeling well enough to go out to get them.  It is good that you are being pro-active in preparing yourself for what lies ahead.

Ladylacy
Posts: 482
Joined: Apr 2012

As a caregiver, I can honestly say that without a peg tube my husband probably wouldn't be alive today, or would have been spending a majority of his time in the hospital.  While he didn't have the same type of cancer you are dealing with, he is did have radiation, chemo and then surgery for laryngeal cancer.  He had his feeding tube for about 18 months the first time, and now after undergoing more radiation and chemo has had a feeding tube since May of last year.  We had hoped to have it removed last month, but due to the PET/CT scan and possibly a recurrence in his esphogus and possibly lung, until the biopsies are completed the doctor has left the feeding tube.  It is so much easier to have it inserted before starting treatment, then after and easy to remove and take care of.  Simple procedure to have done too and removed if not used or needed after a time.  We have been told and most will agree that head and neck treatment is the worse there is.

Just remember everyone is different and many make it thru without a feeding tube and then again many need it.

Sharon

yensid683
Posts: 229
Joined: Apr 2012

Does get difficult.  I am not a physician but what you describe does not sound at all right.  My experience and I would think anyone's expectation would be that as healing from surgery takes place, you pain should lessen.

I had BOT with extension into the left lymph nodes, and my biopsy was done under a general and was a punch biopsy.  I woke up and my throat felt like they'd reinstalled my tonsils and then took them out again.  My ENT recommended a cold liquid diet, popsicles, jello, etc for the first 24-48 hours and then soft/liquid foods for the next few days.  It took me a week to get back to solids, but the pain was controlled by the liquid hydroco. 

When it came time for rads, my onc had a PEG tube set up and it was a life saver.  I don't want to scare you but the best description that I have for what my throat felt like was a freshly skinned knee, dragged through several yards of hot crushed glass then mopped with a couple of coats of fire.  Fortunately it did not last, fading away over the course of a couple of months after treatments ended.

I would definitely get you MD involved, I would not think that your pain should be increasing, perhaps an infection?

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

"...my throat felt like was a freshly skinned knee, dragged through several yards of hot crushed glass then mopped with a couple of coats of fire".

That's one heck of a description!!! But that's pretty accurate as to how my throat felt all last week. Just to swallow salive was brutal! Yeah, I know... I won't have that to worry about soon enough ~lol~

Today is the best I've felt since the surgery. That's not saying much but I was able to get some food in me and my voice is above a whisper. Still nothing solid and the choking sensation is there with every sip of water but I can tell a move in a positive direction. Both tonsillectomies were difficult but the 2nd along with the neck dissection coupled with swelling, edema (they removed several other lymph nodes from the left side) along with more BOT biopsies don't make for a fun time. My mobility has improved, espesially my left arm and shoulder. Still very painful and weak but I can tell the differece when I do my PT exercises. I actually slept 4 straight hours until the pain woke me. That helped a lot!

I've been on antibiotocs since the surgery. My last dose will be tomight so I don't think it's an infection. The wound is healing nicely and is starting to itch so that's a good thing. From my previous experience, I belive this is par for the course with the extensive cutting they did. I recall from the first surgery that I felt pretty good considering through the weekend (surgery was on Friday Dec. 21st). The following Monday, Christmas Eve, is when I got hit upside the head and it progressively got worse until after New Years day. This was much the same but worse. The numbness and lack of swallowing ability because of the neck dissection definitely amplified everything. 

Thanks for all in input! Praying it gets a little better or at least doesn't get any worse.

"T"

jcortney's picture
jcortney
Posts: 423
Joined: Sep 2012

Even though we've had this conversation before, I want to try to convince you to take another look a getting a PEG. I can't imagine going through what I've gone through (let alone you and your surgeries) without the PEG. Once you are down the road with your RADs there will be WEEKS where swallowing anything will be a challenge. I had to be dragged kicking to get mine, but man has it saved my butt.

 

Joe Cortney

Dallas, TX

Ingrid K's picture
Ingrid K
Posts: 811
Joined: Mar 2011

T

My doc put the PEG in during my original surgery.  It was not an option, it was mandatory.

I would have died of starvation without it.  Had it in for 18 months.  Was highly dependent on it for 12 months.

Hopefully you won't need it, and can get thru rads without using it, but since you so much pain now, I would ask them to put one in.

that's my 2 cents anyway. 

feel better soon !

 

cureitall66's picture
cureitall66
Posts: 862
Joined: Aug 2012

You will be so glad you did.....

NJShore's picture
NJShore
Posts: 411
Joined: Nov 2012

T,

I definitely vote for the PEG! Dan has so many issues from not being able to eat. His Irish stubbornness said, if I told you I'd eat, I'll eat. Until that mantra became, you have no idea what it's like, I can't, but still refusing help because he felt so poorly. From the caretakers point of view, it's is excruciating to watch. if you end up not using it, they'll pull it a few weeks after, but something tells me it might come in handy when you get down to small sips. To keep healing through tx you need good nutrition or you slow down healing - no need to feel bad any longer than necessary. 

Meanwhile, Dans surgery, he turned the corner just a day or two after the two week mark, your sitting on the door step of better!

you are in my prayers,

Kari

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

I've seen your picture 
Your name in lights above it 
This is your big debut 
It's like a dream come true 
And when you smile for the camera 
I know they're gonna love it .....  Peg.....

I'll be definitely speaking with the surgeon tomorrow. What's one more "minor" procedure right? 

Thanks for the info and experiences. 

"T"

jcortney's picture
jcortney
Posts: 423
Joined: Sep 2012

Except, this one really is minor.

 

J.

 

staceya's picture
staceya
Posts: 702
Joined: Jan 2010

I lost all of my muscle mass (what little there was of it) and gained back fat.
I did not get enough good nutrition during treatment because I had no peg.

Take care

Stacey

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

Thank you so much for the replies from the caregiver perspective. Poor Marcia has had to deal with this too. She feels helpless and I know I'm not helping when I beg her to stop asking if I want something to eat. The PEG will make it easier and make her feel better when she sees nutrients going into my body. I showed her the responses and she agrees as well. 

This is going to be so difficult for her. Food and eating together is such a bonding thing for us. We both enjoy good food and she's an absolutely marvalous cook (Man, I'm going to miss her food!). We've made it a point to sit down together every day and enjoy a meal together, talk and enjoy each other's company and it makes her very happy that I love what she prepares :) (It's good to be the "Papi"). Since December and the 1st surgery, that has taken a back seat as I healed. I then started bringing food to work so I could get in as many hours as I could because of all the appointments and such. Because of that and a general loss of appetite, I'm not eating when I get home in the evenings (or very little) and I know she's not eating either. She's going to need all her strength to be with me on this journey and I worry about her. 

Having the PEG will give her much peace of mind if she can actively participate in my nourishment. It's not pretty from what I can tell and she'll have some getting used to I'm sure, but she wants so badly to help and the PEG will be key in her doing that, (Can you tell I've pretty much sold myself already?).

I've definitely lost a bit of weight the last 10 days and I only have a short time to put some on before treatments start. We're stocked up on protein smoothie/shake supplies and have the medicine cabinet stocked with the essential over-the-counter meds so we're almost there. (thank you to whoever posted a list of treatment essential items to have around the house!)

PS... Milk of Magnesia was a BLESSING during the last 10 days as I couldn't swallow colace and believe me, you don;t want to break one of those puppies open and mix it with anything! Blaarrrggg! 

"T"

 

jcortney's picture
jcortney
Posts: 423
Joined: Sep 2012

First, I'm with you brother.  My wife Jennifer and I just had dinner together.  She had homemade ravoli with a red sauce, and I had a glass of water.  We were talking about what we both miss most is dinners together and having folks over for dinner.  Our lives used to revolve around food, now it revolves around Drs appointments, mucous and sore throats.

Feeding using the tube is not going to be a problem.  It's fast (about 10 minutes start to finish) and will not gross anyone out.  It's a little weird looking at first, but after that, piece of cake.  I feed about every 2-3 hours during the day.  My formula is 375 calories so I need to fit six in a day; sometimes that's a challenge.  In a pinch, I can give myself a water infusion if I didn't do a good enough job hydradrating that day.  When I was really in bad shape and couldn't swallow at all I crushed up my meds and took them through the PEG.

Any questions just ask, but you guys will do fine.

 

Joe Cortney

Dallas, TX

donfoo's picture
donfoo
Posts: 1239
Joined: Dec 2012

T,

>>>   This is going to be so difficult for her. Food and eating together is such a bonding thing for us. We both enjoy good food and she's an absolutely marvalous cook (Man, I'm going to miss her food!). We've made it a point to sit down together every day and enjoy a meal together, talk and enjoy each other's company and it makes her very happy that I love what she prepares :)  <<<

My plan, currently being fleshed out, is to PEG up early then as things get harder to swallow, start using the PEG for two things: hydration and nutrition.

Nutrition is to take the form of a custom blend of power building supplements that my son has quite a bit of experience with. I tried his main custom blend and it tastes darn good, packs 1200 calories and mucho nutrition. The second thing is I am getting a Vitamix and plan to liquify regular meals my wife prepares. My understanding is the high end blenders literally liquify the food to such a degree that you can easily PEG the liquified contents after a pour through a single strainer. 

The liquifier route seems like it can make your make your meal time quite a pleasant and rewarding experience for you both.

don

http: //beatdown.cognacom.com

 

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