Raynauds

Bkanter72
Bkanter72 Member Posts: 39
in Head and Neck Cancer #1
I finished my treatment about 19 months ago. Have gained my weight back and life is beginning to return to my "new" normal.

So I'm pumping gas yesterday and my tongue starts to tingle a bit. I should mention it was chilly out.the tingling seems to be progressing and moving to numbness. So I head to the gas station bathroom and stick my tongue out to see if I can notice anything. To my horror the front half of my tongue is off-white. So after staring in the mirror for a long 10 seconds or so, I head to my car trying to consider my options. Well by the time I get to my car and look into the rear view mirror my tongue is beginning to turn to pink and eventually back to normal. After googling I found Raynauds syndrome which can come secondary as a result of connective tissue and nerve damage from chemotherapy. Have any of you experienced or heard of this? If so, what was your course of action? I have an appointment with my ent next week, but since I have no symptoms I doubt he'll be able to diagnose. I waited for the same thing to happen today and it never did. Even stood out in the cold to try and trigger it....nothing. Any insight?

B

Comments

  • Hondo
    Hondo Member Posts: 6,636 Member
    #2
    Hi Bkanter

    I suffer with tongue numbness it was caused from Radiation to my head for my NPC cancer about 7 ½ years ago. I was told nothing could be done about it so doctors just left me at that. With me the numbness gets worse with time and the nerve spasm make everything from Eating to speaking extremely difficult. I am now at a point where I can no longer swallow and must eat using a PEG tube.

    I have one doctor who has stepped out of the medical box to see if I can get some help. Right now I am doing Laser Nerve Therapy with 40 HBO treatments, I also got Botox treatment to help with the nerve and Jaw moving pain.

    I will keep you up-dated on how I do as it might help many others someday. If you want my contact info is on my profile drop me a line.

    Wishing you the best
    Hondo
  • phrannie51
    phrannie51 Member Posts: 4,716
    #3
    I've had this syndrom in my fingers and toes for years....
    even before radiation...and it happens when it's cold outside, or it can happen when I touch something cold like getting something out of the freezer. I've never heard of it happening to the tongue, tho....I can imagine fully what it feels like. Now I have neuropathy of my fingers (which has the same feel, minus them turning white)...It's getting cold up here in Montana, and my thoughts were that the Reynauds might be worse than ever now.

    Are you going to talk to your ENT or Onc about it?

    p
  • Bkanter72
    Bkanter72 Member Posts: 39
    #4
    Hondo said:

    Hi Bkanter

    I suffer with tongue numbness it was caused from Radiation to my head for my NPC cancer about 7 ½ years ago. I was told nothing could be done about it so doctors just left me at that. With me the numbness gets worse with time and the nerve spasm make everything from Eating to speaking extremely difficult. I am now at a point where I can no longer swallow and must eat using a PEG tube.

    I have one doctor who has stepped out of the medical box to see if I can get some help. Right now I am doing Laser Nerve Therapy with 40 HBO treatments, I also got Botox treatment to help with the nerve and Jaw moving pain.

    I will keep you up-dated on how I do as it might help many others someday. If you want my contact info is on my profile drop me a line.

    Wishing you the best
    Hondo

    Hondo
    Thanks for the reply. I sure hope you are able to get some relief with the new approach. Have you looked into acupuncture at all? I began seeing a chiropractor that specialized in acupuncture approximately 2 months ago and I no longer take salegen for dry mouth.

    Did you suffer from the numbeness right away or did if come on later? What confuses me is its a year and a half later and really came out nowhere and then disappeared...

    Whata wonderful new world we must discover and explore after the gifts of radiation and chemo. :)

    B
  • Bkanter72
    Bkanter72 Member Posts: 39
    #5
    phrannie51 said:

    I've had this syndrom in my fingers and toes for years....
    even before radiation...and it happens when it's cold outside, or it can happen when I touch something cold like getting something out of the freezer. I've never heard of it happening to the tongue, tho....I can imagine fully what it feels like. Now I have neuropathy of my fingers (which has the same feel, minus them turning white)...It's getting cold up here in Montana, and my thoughts were that the Reynauds might be worse than ever now.

    Are you going to talk to your ENT or Onc about it?

    p

    Phrannie
    Thanks for your post! I plan to discuss it with my acupuncturist, ent, and onco next week. I dont hold out great optimism as sometimes I think they are learning as we go as am I. Honestly, I have learned more from this board than I have from my team of doctors. Ill keep you posted as to what I find out.

    B
  • D Lewis
    D Lewis Member Posts: 1,581 Member
    #6
    I had never heard of this one...
    Perhaps it is the explanation for why I occasionally can't speak clearly. I'll have to check my tongue and see if it goes white at the same time.

    Ah, the gifts that keep giving and giving and giving...

    Deb
  • Pam M
    Pam M Member Posts: 2,196
    #7
    D Lewis said:

    I had never heard of this one...
    Perhaps it is the explanation for why I occasionally can't speak clearly. I'll have to check my tongue and see if it goes white at the same time.

    Ah, the gifts that keep giving and giving and giving...

    Deb

    Hmmm
    I've got that one too, Deb. It's mild, and doesn't happen often, but really irritates me.

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