| | Joined: May 2010 Posts: 224 Gold Member (200+ posts) | OP  Gold Member (200+ posts)
Joined: May 2010 Posts: 224 | For the last week or so, I started getting these spasms, like a charlie horse, that are in my chin area, that feel like it is the bottom of my tongue, or maybe a muscle near the incision that they removed my lymph nodes from. I am thinking it is more the bottom of my tongue, but I am not sure. It has usually been doing this once a day, but today, I did an walking exercise dvd, and it did it for about 30 minutes after that, and now still hurts, but at least isn't spasming.
Has anyone else experienced this, or know of anyone else who has? I don't have insurance right now, but I finally got paperwork to do disability again, and may have medicare when that goes through, but so up in the air about everything I am not sure. I have been out of treatment since July 2010, and I don't know what is going on with this, but I don't like it.
25/female at diagnosis
Dx;stage 3 SCC tongue 03/25/2010
Surgery 04/13/2010
Trach,ng tube, peg feeding tube
Hemiglossectomy, right side neck dissection, 40 lymph nodes removed. Free-Flap transplant to tongue.
30 rounds IMRT ended July 15,2010
| | | | | Joined: Oct 2012 Posts: 118 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Oct 2012 Posts: 118 | Bethers,
My husband gets spasms or cramps as he calls them in the side of his neck often since his laryngectomy. He spoke to his Dr. regarding this and she suggested physical therapy which he declined. She felt it was from the surgery and the fact that they excised through the neck muscle.
Hope this helps
Bette
Bette/CG to husband Reggie 66
dx 1: SCC Soft Palate (12/06)
tx: chemo and rad
dx 2: SCC 6 cm tum rt. vocal chord (12/09)
tx: total laryngectomy with stoma, 2 nodes
dx 3: SCC 4 cm tum BOT (10/16/12)
Tx: partial gloss w/ mod deck dis 4 nodes incl. part. pharyngectomy
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 7 | Hi Bethany!
Nice to see you. Hope it turns out to be nothing! Scar tissue can cause pain.
I get stabbing type pains from time to time.
If you would get SS disability, medicare isnt available until you are on it for 2 years. they usually will backdate it for 6 months so that still would make you wait for 1 1/2 years for medicare insurance. How about asking at your treatment facility or asking your doctor directly if they have any programs to help people without insurance. Many places will have programs to help uninsured patients but too often they wont offer them, you have to ask.
If this pain is bothering you please dont wait too long to get yourself checked out.
Good luck!!
ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive  | | | | | Joined: Sep 2009 Posts: 618 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Sep 2009 Posts: 618 | I had jaw surgery 25 years ago (unrelated to my cencer) I get a muscle spasm just under my chin every once in a while. they are fairly painful and can last for 15 or 20 minutes. After it goes I still feel some pain for up to an hour afterwords. My doctor said it happens some times and they have no way to stop it. I just massage it myself which helps alot.
Kelly
Male
48, SCC (Soft Palet) Rt.,
Stage 1, T3n0m0,
Dx, 8-09, Start IMRT 35 9-2-09 end 10-21-09
04-20-10 NED
8-11 recurrence, node rt. neck N2b
10-11 33 IMRT w/chemo wkly
3-12-12 PET - residual cancer
4-12 5 treatments with Cyberknife & Erbitux
6-19-12 Pet scan CLEAR
12-3-12 PET - CLEAR
| | | | | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,260 Likes: 3 | Yup happens to me ocassionally - not often but every once in a while.
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
| | | | | Joined: Jan 2009 Posts: 1,844 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2009 Posts: 1,844 | Oh yeah I get wicked neck cramps, locks my jaw up and makes it look like I'm having a seizure.
Has gotten better with time and the more P/T I do and making sure I'm hydrated.
Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.
| | | | | Joined: Jan 2009 Posts: 476 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jan 2009 Posts: 476 | John gets them in the side of his neck when he yawns. They stop him in his tracks they are so painful. 
Wanda (47) caregiver to husband John (56) age at diag.(2009)
1-13-09 diagnosed Stage IV BOT SCC (HPV+)
2-12-09 PEG placed, 7-6-09 removed
Cisplatin 7 weeks, 7 weeks (35) IMRT
4-15-09 - treatment completed
8-09,12-09-CT Scans clear, 4-10,6-11-PET Scans clear
4-2013 - HBO (30 dives) tooth extraction
10-2019 - tooth extraction, HBO (10 dives)
11-2019 - Left lateral tongue SCC - Stage 2
| | | | | Joined: Nov 2009 Posts: 493 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Nov 2009 Posts: 493 | Hmmm..I get something that I have referred to as my tongue swelling, but after reading this thread, maybe a spasm is a better word for it. It happens every so often and only lasts a couple of minutes, but it really effects my speech when it happens. There doesn't seem to be any rhyme or reason for it, but it is annoying and often embarrassing when it happens.
Female, nonsmoker, 70, diag. 5/09 after tongue biopsy: stage IV. Left hemi-gloss. and left selec. neck disec. 30 lymph nodes removed May 20. Over 7 weeks daily rads. with three chemo. PEG removed 12/4/09 Am eating mostly soft foods. Back to work 11/09 Retired 4/1/11. 7 clear scans! Port out 9/11. 2/13. It's back: base of tongue, very invasive
surgery involving lifestyle changes. 2/14: Now speaking w/Passey-Muir valve. Considering a swallow study. Grateful to be alive.
| | | | | Joined: Jul 2009 Posts: 1,406 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jul 2009 Posts: 1,406 | My experience is like that of Wanda's husband Slim. A shooting pain when I yawn, but it goes away. I hope you get some relief, Beth!
David 2
SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 14 years all clear in 6/23 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
| | | | | Joined: Sep 2011 Posts: 61 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Sep 2011 Posts: 61 | I get the spasms in my tongue especially when I yawn.
Do not go gentle into that good night. Rage, rage against the dying of the light.
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.
Dx Non small cell lung cancer 05/18/15
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