13 days post-surgery - neck noose and increased pain swallowing

Cut Back...

Cut back on the solid foods for a few days and see if you get any relief... More than likely it's just being caused from the solids going over the freshly hacked up throat... (my thoughts anyways)...

 More than likely if that's the cause and depending on your regime..., you might get a few more weeks of solid foods even with rads before it's back to either a tube, or mainly liquids and very soft soupy stuff.

Best

John

May I ask.....

Michael,

You mentioned above that you had selective disection on both sides. I am wondering how many lymphnodes you may have had removed? Are you sleeping in a flat position? You may be experiencing some lymphadema which can cause the tight feeling. The backup of fluids around the neck also causes the throat to narrow, swallowing becomes harder. Just tossing this out there for you to think about.

My Best to You and Everyone Here

CivilMatt said:

one sip at a time

M,

 

I also had BOT surgery to remove primary and Jugular Vein Dissection to remove one lymph node.  I never felt noose neck, but agree with what the others have mentioned.  You have to eat and you have to heal, it is a conundrum.

 

Matt

Noose Neck

I did not have BOT surgery but did have my jaw replaced and lymph nodes removed. At times, I have felt like I had a necklace on that tightened. The discomfort is on the exterior and has never felt like my swallowing was restricted. I would mention it to your doctors.

MICH4EL said:

Thanks for your replies

Thanks for your replies.  I have gotten through the rough patch with the swallowing and am now eating most foods with only a little sore throat.  The feeling of having a noose around my neck is lymphedema, which the doctor says will likely subside over time as new pathways for lymphatic fluid are formed and allow better drainage.  I have mild turkey neck syndrome. 

 

gobbledegook

Ahh yes,,, Thanksgiving in April!  It was week 2 I believe... I came out of rads, looked in the mirror and there it was! Turkey neck and wrinkly chin and mouth!  ~Sigh~  

I met with a lymphedema specialist and she showed us some exercises to help channel the fluids. However, she doesn't see that I actually have lymphedema "yet".  I had a special "neck bra" made with an additional pad that has foam chips in it to help break up the liquid. 

Glad to hear the eating has improved and you're continuing to recover. Take advantage of that and get that bucket list of foods into you as I assure you it will become an extreme challenge once treatment begins. 

"T"

MICH4EL said:

How are you doing, T?

T,

You are getting closer and closer to the end.  I imagine it is very difficult for you right now but you will be coming out the other side soon.  You're my role model for being optimistic and strong during your treatment and still finding time to be helpful and encouraging to me and others on the discussion board who are earlier in the treatment process.

Thanks!

M

 

 

No Sugar Coating

Hey M,

I'm sitting in chemo getting #5 as I write. It's been a ROUGH weekend. I was Ok Saturday but crashed again Sunday. Add to that, the often mentioned yet not experienced until this weekend...MUCOUS! Ohhhhh Joy of Joys... and I'm not talking Christmas! I want to know who opened the faucet and what other pretty colors are going to show themselves. 

I have 7 rads and 1 chemo to go (The chemo bag is now empty!...just IV fluids left). This last week has been the most difficult by far. The side effects of the drugs pretty much have me delirious. Steroids for the nausea are a real picnic and don't help with sleeping. I'm lucky to get 3-4 hours straight. Eating has been a challenge with lesions in my mouth and throat from the rads. I'm still able to take my pills with an Ensure and I was able to actually eat some mashed potatoes and scrambled eggs On Saturday. I was a hurtin' pup this morning but now that I have some fluids in me I feel better. I'll be heading down to see my RO after this to get a followup from last Thursday.

With the amount of research you've done and your experience thus far, you're going to do fine Michael. Treatment is brutal but you'll survive

"T"

fishmanpa said:

No Sugar Coating

Hey M,

I'm sitting in chemo getting #5 as I write. It's been a ROUGH weekend. I was Ok Saturday but crashed again Sunday. Add to that, the often mentioned yet not experienced until this weekend...MUCOUS! Ohhhhh Joy of Joys... and I'm not talking Christmas! I want to know who opened the faucet and what other pretty colors are going to show themselves. 

I have 7 rads and 1 chemo to go (The chemo bag is now empty!...just IV fluids left). This last week has been the most difficult by far. The side effects of the drugs pretty much have me delirious. Steroids for the nausea are a real picnic and don't help with sleeping. I'm lucky to get 3-4 hours straight. Eating has been a challenge with lesions in my mouth and throat from the rads. I'm still able to take my pills with an Ensure and I was able to actually eat some mashed potatoes and scrambled eggs On Saturday. I was a hurtin' pup this morning but now that I have some fluids in me I feel better. I'll be heading down to see my RO after this to get a followup from last Thursday.

With the amount of research you've done and your experience thus far, you're going to do fine Michael. Treatment is brutal but you'll survive

"T"

T,
Keep fighting and find
T,

Keep fighting and find something to make you laugh. The Steriods bothered me and to this day can't take them. I felt like I was crawling out of my skin, it got sob bad at the first 5 day 24/5 chemo session I told them to stop it and just let me throw up and it got better.

Michael,

Hang in there. Rads/Chemo all suck. The side effects are tough, if your a man of faith just pray for strength to get through everyday, it worked well for me. Try to stay positive and focus on the end, the reward NED is all worth it I promise.


God
Bless you both,

Rachel

NJShore said:

No sugar added...

No sugar added.. it wouldn't taste right anyway...

T,

 

So happy to hear you are doing as well as you are - Not sure Dan could have written a note, or letter by week 5. Let alone make coherent sentences. You are doing so well.. I know it doesn't feel like it, or look like it, but hang in there.. you really are almost done.. Soon you will get to go home and sleep it all off. Not a bad idea to get extra fluids every day either... makes it much easier with the mucocitis..

Hearts and Prayers are with you,

Kari

Writing is something I CAN do when....

Hi Kari,

Taking a few minutes to jot a note down is in many ways easier than speaking and it definitely takes my mind off the pain. As an added bonus I've retained about 80% of my taste buds! I can taste the sweetness of Ensure (Vanilla, Chocolate and Strawberry). Even blander foods like mashed potatoes and scrambled eggs & cheese have a good flavor. There are some foods that are "off" but not unpleasently so. 

A tip/hint I'll confidently pass on as I've personally seen it's effectiveness. When I started to see my taste go astray, I, at the advice of my PCP bought a product called Miracle Fruit Tablets. It's a berry extract that effectively acts as a halucinegen for your tongue. I just googled it and found a place here in VA that sells them (ordered on-line). The effect lasts for a few hours. Things that are bitter taste sweet and things that are sweet and have lost their sweetness re-gain it. It's done wonders for saliva production while eating too! It's not something I've used often but it's helped when I need a little edge in getting food into me

"T"

fishmanpa said:

Writing is something I CAN do when....

Hi Kari,

Taking a few minutes to jot a note down is in many ways easier than speaking and it definitely takes my mind off the pain. As an added bonus I've retained about 80% of my taste buds! I can taste the sweetness of Ensure (Vanilla, Chocolate and Strawberry). Even blander foods like mashed potatoes and scrambled eggs & cheese have a good flavor. There are some foods that are "off" but not unpleasently so. 

A tip/hint I'll confidently pass on as I've personally seen it's effectiveness. When I started to see my taste go astray, I, at the advice of my PCP bought a product called Miracle Fruit Tablets. It's a berry extract that effectively acts as a halucinegen for your tongue. I just googled it and found a place here in VA that sells them (ordered on-line). The effect lasts for a few hours. Things that are bitter taste sweet and things that are sweet and have lost their sweetness re-gain it. It's done wonders for saliva production while eating too! It's not something I've used often but it's helped when I need a little edge in getting food into me

"T"

They're on my list too!!

I'm going to see if I can Miracle Fruit Tabs the second I post this to the thread!!  Everything is worth a try.

p

Edit:  Just ordered some from Amazon....the day they arrive I'm going to the store for some Praline Icecream

phrannie51 said:

They're on my list too!!

I'm going to see if I can Miracle Fruit Tabs the second I post this to the thread!!  Everything is worth a try.

p

Edit:  Just ordered some from Amazon....the day they arrive I'm going to the store for some Praline Icecream

Did the Miracle

Fruit tabs help or have you recieved them yet ? Praline Ice Cream sounds soooo good !

Peggy