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danielr Offline OP
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Hello everyone, I am new to this forum.

First off, i want to wish everyone here a quick recovery.

A bit of background:

On August 2016 my wife underwent a partial tongue removal after a tumour was discovered under her tongue.
On November 2016 she finished a series of 33 head & neck radiotherapy treatments,
On the following 3 months the tip of her tongue slowly got it's feeling back (became less numb).
Over the last 2 months she noticed that sometimes the tip her ''regular'' tongue became completely white, and returned to normal after about a minute. throughout this minute she feels the tip of her tongue is numb.
She thinks this happens when she feels coldness in her body (not in her tongue). I've read about this phenomenon on the web and discovered it may be the "Lingual Raynaud phenomenon".
as time goes by, this phenomenon happens to her more frequently. All of her doctors don't think it's anything to worry about, but we feel they just don't know about the phenomenon.
last night, the tip of her tongue became COMPLETELY NUMB, without her tongue becoming white. It happened just like that. We are now 8 hours later, and the situation remains the same.

We would really appreciate it if you guys could help us figure this out, since it seems like this forum has a lot of experience (sometimes for than the doctors').

Thank you,
Daniel.

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Welcome to OCF! You have come to the right place for info and support. With yoru wife being 8 months post rads, she is still in the recovery phase with lots of improvements still to happen up until about the 2 year post rad mark.

I know all about the white tongue. Ive had that happen to me many times and it can be quite painful. I called it grey tongue, but yes white is a good description too. Its from lack of circulation or it happens when its cold outside. Im in Pennsylvania where winters (to me) can be very cold its happened to me when I go outside to shovel snow. The longer it stays white (or grey) the more it can hurt when the circulation starts working again. At least thats what Ive experienced. I didnt get as far as you did with researching it to find out what the phenomenon is called. I havent had it happen to me in a long time. Since Im now almost 10 years post rads, I cant remember what my ENT told me about it. Make sure you ask your wifes doctors on her next appointment. Or if this continues to happen for extended periods of time then go get it checked out by her doc. Please come back and post what they tell you after the appointment as Im sure its not only your wife and I who have had this happen.

Thank you!



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
Joined: Jul 2017
Posts: 4
danielr Offline OP
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Hi Christine. WOW, I did not expect such a quick response. Seems like this is an amazing place to be a part of. Thanks so much smile

I have a few questions/replies regarding your message:

1. Do you think you just got used to the cold weather over time, and that's how the gray tongue issue passed? Did you take any meds/do anything to help with the phenomenon?
2. My wife met her oncologist a week ago and he kinda waved her off when she mentioned the white tongue, saying that she's just paranoid and that everything's ok. it seemed like he's never even heard of the phenomenon. She has an appointment with her ENT on July 17th. We are also looking to get an appointment with a rheumatologist (the doctor that treats Raynaud). Our worries are that he will not know about the Lingual Raynaud because it is considered quite rare.
3. As i've mentioned in my first post, the tip of her tongue became completely numb, WITHOUT her tongue becoming white. Usually the numbness occurred for a short minute or two WHILE her tongue becomes white. This is why she is worried this time. There is nothing to explain why the numbness occurred (and remains) right now. -Just wanted to add that after her surgery the tip of her tongue was also completely numb, and over the next months she slowly got her feeling back. this time the numbness struck her all at once.

Thanks for all the help. It means a lot to her. She feels like no one really understands her (until your reply).

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I did not take any meds to help with the grey/white tongue. It only happened once in a while when I got really cold outside. It was just a freak thing that would come out of the blue. I was outside going from my front door to my car about 30 ft away in the winter when it hit me. That fast, in only about 10 seconds my tongue circulation quit on me. It only lasted a few minutes and then I didnt have it happen again for weeks. I talked with my ENT about the problem but I just cant remember that far back to what he told me. I know there wasnt anything he could do to help me with it.

I would think the ENT would be much more familiar than the oncologist. The ENT specializes in the head/neck areas where the oncologist probably treats all types of cancer. Oral cancer is relatively rare, that doctor may not have seen many patients who have had it. Sounds odd but even most dentists are not familiar with OC patients as many have not ever seen anyone with OC.

We are all in this together. Im sure you wife will feel at home with our group as we have been thru what she has and we know how lousy it is to go thru those things. The entire this STINKS!!!!... to say the least.

Your wife's tongue problem could be related to something with her surgery or poor circulation caused by some kind of inflammation. As with any surgery the patients will experience swelling so your wifes numbness is completely normal. Im sure this can be very troubling to your wife. Id be upset about it too! Please understand, Im not a doctor and I do not have a medical background so I may not know things an experienced doctor would. But, I also probably know many things the doctors dont as Ive talked with thousands of OC patients over the years about all sorts of issues. Im especially a wiz with the problems patients have with their feeding tubes 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
Joined: Jul 2017
Posts: 4
danielr Offline OP
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Joined: Jul 2017
Posts: 4
Thank you so much for taking the time to reply in such detail. I'll be sure to update on my wife's meeting with the doctor!

Joined: Jun 2007
Posts: 10,507
Likes: 6
Administrator, Director of Patient Support Services
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Im interested in hearing what your wifes doctor says. Good luck smile

Heres a link to previous threads (links on more threads are in my old post) about this same subject....

thread about grey tongue




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
Joined: Jul 2017
Posts: 4
danielr Offline OP
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OP Offline
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Joined: Jul 2017
Posts: 4
Thank you!! I'll update soon.


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