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Joined: Nov 2017
Posts: 7
Xamuhs Offline OP
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Joined: Nov 2017
Posts: 7
As an update to this situation...

I ended up having a biopsy on my tongue at the end of May, 2018. The ENT took a portion out of the TOP of my tongue - put 6 stiches in and outside my tongue. The incision was close to the area bothering me, but not directly on it. I was frustrated by that, but he told me he didn't want to cut into the tip of my tongue as it could create bigger issues. The results came back negative for cancer. They did remark that the lining in my tongue was abnormal and could be similar to HPV, but the tests didn't show that. The incision healed fine, but there is scar tissue.

The pain in the original site continues. Further, it's now inflamed, red and numb. I ended up going to another ENT and an oral surgeon. I ended up having two CT scans and two MRI's. I also had more blood work done. All came back normal, sans some concern with my red blood cell count. But, I was fighting a cold at that time, too.

In the end, I am no better off. In fact, it's worse. As I talk, the spot gets tight, aches and I get shooting pains in the tip of my tongue. It's starting to impact my work as I speak for a living. It's taking a toll on myself, but also my family. I'm currently in PT to try some stretching but I think that makes it worse. They also have me on an anti depressant.

I don't know what else to do at this point. To look at my tongue tip, you don't see much until I start talking, or flex it. At that point, you can see a raised lump. That area is always red, sore and numb.

Sure wish I knew what to do next!... frown

Joined: Jul 2012
Posts: 3,267
Likes: 1
Patient Advocate (old timer, 2000 posts)
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Patient Advocate (old timer, 2000 posts)

Joined: Jul 2012
Posts: 3,267
Likes: 1
Xamuhs,

I like when they say no cancer was found! The tongue is very sensitive with nerves, taste buds etc, and I found from experience how painful a biopsy or minor surgery can be in the mouth. I originally had a blocked salivary stone when diagnosed, so I had it removed during my exploratory surgery. I think that was the most painful out of all my surgeries, and the plug they was temporarily put in was annoying. Later times I had two tongue biopsies, an incisional and punch biopsies, both were no joys either, but at least they came back negative! Today, my tongue is fine!

Have to tried a Speech and Language Pathologist (SLP). They work closely with an head and neck surgeon, but with other doctors as well. They give you exercises to do to help in swallowing and speech, etc.

I hope this helps


10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs






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