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#195630 - 01/24/18 08:19 PM Cronic swollen tongue  
Joined: Jan 2018
Posts: 3

Joined: Jan 2018
Posts: 3
Hi, I’m Sandra,

I had my surgery in July for Squamous Cell Carcinoma. It was a big growth. I had a skin graft on the bottom of my mouth, too. I have done all of the tongue exercises to get my tongue back in place and working right. I did my exercises everyday 3or4x per day. Then, a couple of months ago it started swelling and has stayed swollen. It is sooo aggravating and inhibits me in talking and eating!

Has this happened to anyone else and, if so, what did you do about it.

This is my first post and I know I will be make posting errors. Tell me and forgive me!


Stage 2
Invasive Squamous Cell Carcinoma
Skin graft bottom of mouth
Bottom of mouth, right side
Lymph nodes, right retrojuglar, excision
Teeth removal
Breast cancer, mastectomy July, 2008
Stage 4 COPD

#195713 - 02/11/18 01:01 AM Re: Cronic swollen tongue [Re: SFH.JUSTME]  
Joined: Feb 2018
Posts: 2
JonAngel Offline
JonAngel  Offline

Joined: Feb 2018
Posts: 2
... and this is my first post, right after registering. I have a swollen tongue after having its right base removed for a small primary site (squamous cell carcinoma, HPV-related) It was robotic (Da Vinci) surgery.

In any case, I believe tongues swell up when the lymphatic fluid in them no longer has a clear path to drain, fibrous tissue or scar blocking the flow, or no gland to empty into. I have not solved the problem, and I've been told that the lymphedema is likely a lifetime condition. I come here now looking for someone who knows a good manual drainage method for the tongue.

best wishes, Jon

Jonathan Angel
#195727 - 02/14/18 04:54 PM Re: Cronic swollen tongue [Re: SFH.JUSTME]  
Joined: Jun 2013
Posts: 98
KristenS Offline
Supporting Member (50+ posts)
KristenS  Offline
Supporting Member (50+ posts)

Joined: Jun 2013
Posts: 98
I hadn't thought about it being a drainage issue, and honestly it makes me feel better to think that. I know my neck and side of face still have issues, even a few years later. The part that scares me (mostly it just frustrates me, but this part really scares me) is that I now have food allergies that can be anaphylactic and I even have to carry an Epi-pen. I *need* to be able to tell if my tongue is swelling because it's just wonky or if it's part of the reaction I'm encountering when someone lies about my food (which happened on my anniversary dinner of all things, and my food allergy is NOT a hard one to control; I'm allergic to spinach, of all ridiculous things).

My speech therapist who helps with my neck massage work does have me do tongue massage work too, to keep scar tissue from continuing to form. I need to keep on top of that better ... it probably helps more with the drainage than I would have thought. I think the term she uses for my neck work is myofascial release, but I might have spelled it wrong. If you can find a therapist who specializes in this, they are worth their weight in gold.

Surgery 5/31/13
Tongue lesion, right side
SCC, HPV+, poorly differentiated
T1N0 based on biopsy and scan
Selective neck dissection 8/27/13, clear nodes
12/2/13 follow-up with concerns
12/3/13 biopsy, surgery, cancer returned
1/8/14 Port installed
PEG installed
Chemo and rads
2/14/14 halfway through carboplatin/taxotere and rads
March '14, Tx done, port out w/ complications, PEG out in June
2017: probable trigeminal neuralgia
Fall 2017: HBOT
Jan 18: oral surgery

Moderated by  Eva Grayzel 

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