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#194937 - 08/04/17 02:13 PM Tongue paralysis  
Joined: Mar 2011
Posts: 126
MaineWill Offline
Senior Member (100+ posts)
MaineWill  Offline
Senior Member (100+ posts)

Joined: Mar 2011
Posts: 126
Portland Maine
Hello family, 6 years post chemo / rads I am running into some more problems. This week I started accidentally biting my tongue . OUTCH !!!. Then the other day I was having really bad neck spasms in my neck and started to notice that I was slurring my speech a bit. Now my tongue feels like it's a bit paralyzed on one side. It's crooked and I'm unable to gather any saliva from that side. I've read a bit about this and I'm wondering what OCF members have experienced this and if there is anything they they have found helpful.
Much thanks.
Will


Lump in left side neck discovered Sept 2009
Misdiagnosed & FNA inconclusive
Large lymph node removed Nov. 2010 SCC and HPV16 pos
PET pointed tonsilectomy Feb. 2011
1ml tumor left side tonsil
Rads scheduled March 14th 2011. 2X36 GY's (72)
CarboTaxol once a week X 4 or 5 starting 4/5/11
No PEG
#194968 - 08/11/17 12:52 AM Re: Tongue paralysis [Re: MaineWill]  
Joined: Jun 2007
Posts: 9,715
ChristineB Offline
Administrator, Director of Patient Support Services
ChristineB  Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 9,715
PA
Hey WIll! Nice to see you posting but Im sorry its due to a problem. My cancer was in my cheek and jaw so I havent been thru the problems you mentioned. Hopefully someone who has been thru this will reply sometime soon. I always err on the side of caution and suggest seeing your ENT for a good check up to make sure you're ok. We can never be too careful after what we all have been thru. Good luck!!!

Hope its nothing serious and resolves itself quickly. Feel better soon!!!


Christine
SCC 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 smile
#194970 - 08/11/17 02:26 AM Re: Tongue paralysis [Re: MaineWill]  
Joined: Sep 2016
Posts: 104
bjmpittsburgh Offline
Senior Member (100+ posts)
bjmpittsburgh  Offline
Senior Member (100+ posts)

Joined: Sep 2016
Posts: 104
If your tongue is crooked and saliva production is noticeably lower on one side, you may have something pushing on the main nerve on one side of the tongue at the base.

Don't wait, schedule a visit to your ENT as soon as possible. Could be an issue at the base of your tongue. Hard to spot and usually found only with scans.

Good Luck (Don't wait for this to resolve itself.)


1997 SCC Tumor on tongue - Partial Glossectomy
1997 Met to Lymph
Radical Neck Dissection / 2nd Partial Glossectomy
6 weeks chemo and radiation
Brachytherapy
2011 Stroke
2014 Recurrence SCC at Base of Tongue / Hemi-glossectomy
Free Flap reconstruction from thigh
PEG Tube inserted
6 weeks radiation
Trisimus
Pump Feed
Permanent Issues with speech and swallowing

#194978 - 08/12/17 04:24 AM Re: Tongue paralysis [Re: MaineWill]  
Joined: Mar 2011
Posts: 1,005
tamvonk Offline
"OCF Kiwi Down Under"
tamvonk  Offline
"OCF Kiwi Down Under"
Patient Advocate (1000+ posts)

Joined: Mar 2011
Posts: 1,005
New Zealand

Hi Will, the symptoms you describe are what started us on this journey.
Kris began having trouble with his speech. Slurring his words. Not always in the beginning, but over a couple of months it became consistent. He also wasn't able to stick his tongue out straight. It deviated markedly to the right. Turns out that he had a lymph node that was pressing on the Hypoglossal nerve. This nerve inervates the tongue.
I recommend that you see your oral cancer ENT to get this issue looked at.
Wishing you all the best,
Tammy


Caregiver/advocate to Husband Kris age 59@ diagnosis
DX Dec '10 SCC BOT T4aN2bM0 HPV+ve.Cisplatin x3 35 IMRT.
PET 6/11 clear.
R) level 2-4 neck dissection 8/1/11 to remove residual node - necrotic with NED
Feb '12 Ca back.. 3/8/12 total glossectomy/laryngectomy/bilat neck dissection/partial pharyngectomy etc. clear margins. All nodes negative for disease. PEG in.
March 2017 - 5 years disease free. Woohoo!
#195014 - 08/18/17 11:06 PM Re: Tongue paralysis [Re: MaineWill]  
Joined: Mar 2011
Posts: 126
MaineWill Offline
Senior Member (100+ posts)
MaineWill  Offline
Senior Member (100+ posts)

Joined: Mar 2011
Posts: 126
Portland Maine
I'm please to report that (per my scans) it was neither a stroke or a re-occurrence of cancer. It is some pressure on my Hypoglossal nerve from fibrosis resulting from radiation 6 years ago. It looks like I might even have some options to correct it. HUGE PHEW and thanx for your replies !

Will


Lump in left side neck discovered Sept 2009
Misdiagnosed & FNA inconclusive
Large lymph node removed Nov. 2010 SCC and HPV16 pos
PET pointed tonsilectomy Feb. 2011
1ml tumor left side tonsil
Rads scheduled March 14th 2011. 2X36 GY's (72)
CarboTaxol once a week X 4 or 5 starting 4/5/11
No PEG
#195017 - 08/19/17 12:27 AM Re: Tongue paralysis [Re: MaineWill]  
Joined: Feb 2017
Posts: 66
sooner Offline
Supporting Member (50+ posts)
sooner  Offline
Supporting Member (50+ posts)

Joined: Feb 2017
Posts: 66
That is great news!


Wife to DP. DX SCC BOT 1/31/17
First treatment 2/27/2017 Cisplatin 3 times and IMRT
Last treatment 4/18/2017
Clear PET 7/13/2017
PEG removed 8/4/2017
#195018 - 08/19/17 12:51 AM Re: Tongue paralysis [Re: MaineWill]  
Joined: Jun 2007
Posts: 9,715
ChristineB Offline
Administrator, Director of Patient Support Services
ChristineB  Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 9,715
PA
Thanks for posting the update. Congrats on the great news. Options, no cancer or stroke are always positive things smile


Christine
SCC 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 smile

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