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#147820 - 04/05/12 07:59 PM Interesting observation
Cheryld Offline
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)

Registered: 12/22/10
Posts: 5091
Loc: Toronto canada
For those of you who've undergone a tongue surgery and neck dissection I was wondering...

I know we all have our good days and bad days and somedays my tongue feels more swollen than others. I have always wondered at the differences from day to day... since I tend to like to figure out the whys of this stuff. This is of course all in my quest to return to optimum post treatment status. ;o)

I do find that the acupuncture really helps loosen my neck and scar tissue and returning blood flow to the area has really softened the area up, though there are days that my neck feels tighter than others...

it's come to my attention that this symptomology is closely related to swelling in my face, jaw and neck... ultimately the more swollen all of them feel the tighter my neck... it makes sense since that tissue is full of blood and therefore less slack.

I do notice that lymphatic massage helps this a lot, however I have also noticed it has a lot to do with how I sleep as bizarre as that may sound. I was never a back sleeper before all of this happened - through treatment I would sleep on my side with a facecloth on my pillow to catch the drool... but since I have a bit of post nasal drip courtesy of rads, I got into the habit of sleeping on my back with my head in a little valley between two pillows.. weird I know but it allows my head to drift off to the left a bit so I don't feel the post nasal drip while trying to fall asleep. However, I've noticed now when I do this, I wake up a little more swollen in the morning... I also recently discovered - thankfully - sleeping on my side..either side... allows me to wake up feeling almost normal...

Just thought I'd share.

Has anyone else noticed this?

have a good one.

Edited by Cheryld (04/05/12 08:02 PM)
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan

#147909 - 04/07/12 03:45 PM Re: Interesting observation [Re: Cheryld]
Cherri79 Offline
Contributing Member (25+ posts)

Registered: 09/27/11
Posts: 45
Loc: Arkansas
I too had to use the cloth on my pillow to catch drool... I also find that sleeping on my side or stomach makes me feel less stiff in the morning. I massage my neck and jaw daily as well. Wish I had acupuncture available in my hometown. Would love to try it.
31 @ Dx SCC of tongue right side May 27, 2011, no tobacco, light drink
Partial gloss. and ND June 2011 - 2 jaw nodes positive ("encapsulated")
33 rads ended 10/21/11. NED 6/11/13
I can do all things through Christ who strengthens me.

#147916 - 04/07/12 06:49 PM Re: Interesting observation [Re: Cherri79]
MikeM Offline
Contributing Member (25+ posts)

Registered: 01/21/12
Posts: 40
Loc: California
Cheryl, interesting observations.. Maybe more common than realized. I thought the post nasal drip was just me, started with the original symptoms and hasn't stopped. Always when you forgot to put a tissue in your pocket. Sleeping in the 'V' between pillows is the norm. Sliding down too far increases the morning soreness in neck and shoulders. Can't comment on the drool since the tonsils are further back.
I feel more normal now, thanks for sharing.
Nov2011Tonsil Cancer Stage3 T1N1 HPV+, Non-smoker, slight drinker
Dec2011 Radical Tonsilectomy (TORS),
Jan2012 Neck Disection areas 2,3,4
Feb2012 Opinions from 5 RO's decision for No Rads/No Chemo
Jan2013 all clear at 1 year , continue regular check-ups
Jan2014 all clear at 2 years, less frequent check-ups
Jan2015 all clear at 3 years, MRI, chest x-ray, blood work all good

#147930 - 04/08/12 12:34 AM Re: Interesting observation [Re: MikeM]
KP5 Offline
"Above & Beyond" Member (500+ posts)

Registered: 10/09/11
Posts: 798
Loc: NY
I know Kevin says that if he sleeps on his back he is more swollen in the am. He attributes to breathing with his mouth open more than when he is on his side.
Kathy wife/caregiver to:
Kevin age:53
Dx 7/15/11
Non smoker, casual drinker
7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11
PEG placed 9/1/11 Removed 11/8/11
Clear PET 10/2012


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