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#60448 03-15-2007 09:23 AM
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Posts: 126
Vin Offline OP
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My wife has been complaining about numbness in the floor of the mouth on the left side extending into the tongue.

She had surgery to remove an SCC tumor on the left later tongue in March 2005 which was followed by chemoradiation.

Even though we had a couple of scares since then and one additional surgery in December 2006 to remove another tongue growth which turned out to be all scar tissue there has not been any sign of cancer. She also gets a CT scan every 6 months.

I would like to ask if the any of the forum members have experiences this type of numbnesses as we are concerened about it.

We have an appointment next week with our ENT for an evaluation of this problem.

Thank you.


CG to wife;
Jan 2005 DX SCC Tongue T2N1MO; RND surgery Mar 2005; 35 XRT and 4 cisplatin completed Jul 2005.
Dec 2006 tongue surgery, Scar tissue no cancer.
Feb 2010 neck node FNA - negative.
2010 ORN right jaw plus fracture
2015 ORN left jaw plus fracture
Feb 2016 Lower jaw reconstruction by Fibula free flap+titanium plate - Permanent G-tube
June 2016 Difficulty breathing - Permanent Trachea tube
Dec 2019 DX Cervical cancer - Stage 1 - Surgery Jan 16 2020.
15-20 esophagus/larynx dilations

#60449 03-15-2007 09:42 AM
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Posts: 108
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Vin,

I can't help you but I have an opposite situation. Some of the nerve ends, somehow rerouted themselves from the tongue area that was removed to between two of my molars. This makes it very painful to floss because when I hit the spot, it feels like someone is sticking my tongue with a pick. It is still that way 4 years after the surgery and I have resigned to living with it as a minor inconvenience.

My point is that nerves are not very predicitable at least in my experience with this surgery on the tongue. What she is experiencing may be permanent; it may not be. Only time will tell.

Jim


T3N2aM0 SCC right oral tongue. Partial Glosectomy, Modified Neck disection for 1 Lymph Node. Dec. 2002. 35 IMRT 2003.
#60450 03-15-2007 10:57 AM
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Posts: 126
Vin Offline OP
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Jim,

Thank you for your reply. We are also hoping that this is a nerve ending related problem as a result of two surgeries.

Your post makes me feel somewhat better. I hope that your nerve ending problem will get better with time.

Vin


CG to wife;
Jan 2005 DX SCC Tongue T2N1MO; RND surgery Mar 2005; 35 XRT and 4 cisplatin completed Jul 2005.
Dec 2006 tongue surgery, Scar tissue no cancer.
Feb 2010 neck node FNA - negative.
2010 ORN right jaw plus fracture
2015 ORN left jaw plus fracture
Feb 2016 Lower jaw reconstruction by Fibula free flap+titanium plate - Permanent G-tube
June 2016 Difficulty breathing - Permanent Trachea tube
Dec 2019 DX Cervical cancer - Stage 1 - Surgery Jan 16 2020.
15-20 esophagus/larynx dilations

#60451 03-15-2007 11:26 AM
Joined: Jul 2006
Posts: 446
"OCF Canuck"
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Vin,
my cancer was in my jaw, however the numbness issue is a real hassle at times.

I am numb (as in novaaine numb) all along my lower left jaw inside and out. I have no sensation in my mouth at all on that side, and about 30% of my tongue is numb as well.

It's problematic in that I have to be very careful of the temperature of food; I've burnt the inside of my mouth with hot cheese from a slice of pizza, and didn't realize it until some time later.

It's normal, and I'm told it will improve to some degree, although it may not return to pre-surgery norms.
Wayne


SCC left mandible TIVN0M0 40% of jaw removed, rebuilt using fibula, titanium and tissue from forearm.June 06. 30 IMRT Aug.-Oct. 06
#60452 03-16-2007 06:27 PM
Joined: Oct 2005
Posts: 126
Vin Offline OP
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Wayne,

Thank you for your reply and sharing your experience. We are feeling somewhat relieved that the numbness my wife is feeling may be related to nerve ending problems resulting from the two surgeries she has had.


CG to wife;
Jan 2005 DX SCC Tongue T2N1MO; RND surgery Mar 2005; 35 XRT and 4 cisplatin completed Jul 2005.
Dec 2006 tongue surgery, Scar tissue no cancer.
Feb 2010 neck node FNA - negative.
2010 ORN right jaw plus fracture
2015 ORN left jaw plus fracture
Feb 2016 Lower jaw reconstruction by Fibula free flap+titanium plate - Permanent G-tube
June 2016 Difficulty breathing - Permanent Trachea tube
Dec 2019 DX Cervical cancer - Stage 1 - Surgery Jan 16 2020.
15-20 esophagus/larynx dilations

#60453 03-16-2007 07:23 PM
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Vin, I too have numbness on one side of my tongue and that side of my mouth. It has been that way since a surgery to remove a large tumor from the area where wisdom teeth are. It has not changed in five years, but I have become so used to it that I no longer consider it a problem.

Like Jim, the nerves were rearranged to the point where dentists have no idea where to start the numbing process. I also have some painful flossing areas, but at 5 years out, I am so happy to be alive and having a great time with no limitations that I just consider it the price I paid for what I have now.

Another OC survivor and I once sat down to make a list of all the ways in which we were changed physically. It was hard to do because we both feel so normal, not "new normal" but pre-cancer normal. I write about this because it just takes time to get used to changes, and then adapt in whatever manner may be necessary, then just get on with life.

If it turns out that your wife's numbness is permanent, please assure her that when some time has passed, it will become much less irritating. If she would like to talk to me, send a message through this site and I will be happy to call.

#60454 03-17-2007 01:10 AM
Joined: Apr 2005
Posts: 2,219
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Vin,

I would just like to add a few words to what others have said. I had tongue surgery around the same time as your wife and although I didn't have any chemo or radiation, I too have residual numbness. Most of the time I don't notice it or think about it. It is amazing what the human mind and body can adapt to and she will find this out too, in time.

Nobody comes out of this experience 100% physically or mentally the same, but the key thing to remember is that each day is a gift and I am thankful every day for that.

Jerry


Jerry

Retired Dentist, 59 years old at diagnosis. SCC of the left lateral border of the tongue (Stage I). Partial glossectomy and 30 nodes removed, 4/6/05. Nodes all clear. No chemo no radiation 18 year survivor.

"Whatever doesn't kill me, makes me stronger"
#60455 03-19-2007 09:50 AM
Joined: Feb 2005
Posts: 2,019
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I have numbness on the left side of my mouth--the tongue and the gums on that side are numb and I think part of the jaw. It has been that way ever since my surgery. I think if your wife has had this numbness since her surgery, that's pretty common. On the other hand, if it hjas just come on since then, she might want to see someone about that.

Nelie

p.s. How is her swallowing now, Vin?


SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"

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