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

MICH4EL's picture
MICH4EL
Posts: 73
Joined: Mar 2013

I am not too worried about this but I thought I would ask folks about it.  I am 13 days post-surgery after receiving tonsillectomy and biopsies of tongue, plus selective neck dissection both sides.  They found a small primary tumor at the base of the tongue.  It was really tough after surgery, but I have been making steady progress, feeling better and better every day.  I am still on a pretty soft diet but I have been able to eat real food for about 5 days.  However, during the last two days I have taken a turn for the worse.  My throat feels really tight like there is a noose around my neck.  Also, swallowing has become more difficult again - it hurts and feels like there is lump in my throat when I swallow that I didn't feel 2 days ago.  Today I can't easily eat foods that I was eating 2 days ago. 

Have others with similar surgeries experienced the "neck noose" or a worsening of pain when swallowing about 2 weeks after surgery?

Oh, by the way, I received a test result indicating that my H&N cancer is probably HPV related.  P16 test showed the cancer cells were strongly positive for P16.  Good news in terms of treatment outcomes and survival rates, but fromw what I have read on this discussion board this finding will probably not affect my course of treatment.

I am meeting with the radiology oncologist at Mayo Clinic next week to talk about a treatment plan.  I will be getting a second opinion from another RO.

M

 

Skiffin16's picture
Skiffin16
Posts: 8057
Joined: Sep 2009

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

fishmanpa's picture
fishmanpa
Posts: 1105
Joined: Jan 2013

Hi Michael,

Skiffin is right. Take a break from solid food for a few days. I'm willing to bet you ate something that irritated your throat. I had that happen with the second tonsillectomy. I had a hankerin' for pigs in a blanket (Hebrew National and Pillsbury Crescent rolls) and nothing was going to stop me... except.. OUCH! ~lol~  If your pain doesn't ease up, definitely call the doctor. 

While no news about cancer short if NED is good news, the fact that your primary site was found and it's HPV positive bodes well for responsiveness of treatment. I'm glad you're seeking a 2nd opinion. 

Positive thoughts and prayers

"T"

 

 

MarineE5
Posts: 746
Joined: Dec 2005

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's picture
CivilMatt
Posts: 2861
Joined: May 2012

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

hwt's picture
hwt
Posts: 1836
Joined: Jun 2012

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's picture
MICH4EL
Posts: 73
Joined: Mar 2013

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. 

 

fishmanpa's picture
fishmanpa
Posts: 1105
Joined: Jan 2013

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's picture
MICH4EL
Posts: 73
Joined: Mar 2013

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

 

 

fishmanpa's picture
fishmanpa
Posts: 1105
Joined: Jan 2013

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"

donfoo's picture
donfoo
Posts: 1163
Joined: Dec 2012

Countdown now well into single digits. Congrats as well derved so far. Hang in there, keep inching forward and fighting the good fight. You are experiencing all you knew might happen so pat yourself on the back for being well informed and going in and staying eyes wide open.

Just a few more days to reach the peak of this battle, then you know things will stablize a bit then the side effects will start backing down.

 

Don

rachel12yrsuv's picture
rachel12yrsuv
Posts: 429
Joined: Feb 2013

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's picture
NJShore
Posts: 411
Joined: Nov 2012

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

fishmanpa's picture
fishmanpa
Posts: 1105
Joined: Jan 2013

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"

donfoo's picture
donfoo
Posts: 1163
Joined: Dec 2012

Thanks for the tip - I added to list of ammo while suffering rads. Thanks

phrannie51's picture
phrannie51
Posts: 3624
Joined: Mar 2012

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 Tongue Out

donfoo's picture
donfoo
Posts: 1163
Joined: Dec 2012

<<Just ordered some from Amazon....the day they arrive I'm going to the store for some Praline Icecream Tongue Out>>

Be in a chair inside so when you start hallucinating you won't get run over or something. lol

peggylulu's picture
peggylulu
Posts: 367
Joined: Dec 2012

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

Peggy

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