Lost most of my taste, sorta.

Options
wmc
wmc Member Posts: 1,804
edited August 2014 in Head and Neck Cancer #1

I never had any Chemo or Rad, but I lost most of tast on my tounge. I can tast some salt but that's it and not like it should be. I didn't realize it because when I swallow I do have tast, just not on my tounge until then. Yesterday I had my orange juice and cream of chicken soup [as everyday] and I noticed if I just hold it in my mouth there is no tast, until I swallow. I asked my wife to tast the orange juice, she asked if it wad bad, I told her no it's good. I asked her to just hold it in her mouth for a while and let me know if she can tast it on her tounge. Yes she can. If I hold it in my mouth and don't swallow I can't tast or tell you what it is, until I swallow and at that point I know it is OJ. I guess the only tast buds that work are of the base of my tounge way back down the throat. 

I know most of you that had RAD lost your tast but the ones that have it back, can you tast on your tounge? I will have to ask my Dr the next time I see him in two months.

Bill

Comments

  • KTeacher
    KTeacher Member Posts: 1,103 Member
    Options
    Fine pair!

    You have lost taste and I have lost feeling in more than 1/2 of my mouth and head.  I only chew on one side, that's a good thing because I now have an open gap in my upper gum area, trying to keep the food out.  You had quite a surgery plus neck dissection.  They took one of my favorite salivary glands during my dissection.  I don't know if nerves that were cut could effect taste.  I know when I first started tasting again that I could take a bite or two and taste and could not taste after that.  These side effects get curiouser and curiouser.

  • Goyca
    Goyca Member Posts: 220
    Options
    Bill don't know if this is

    Bill don't know if this is common, u should definitely check with ur Dr. Good luck though, I know what u r feeling :(

  • Hondo
    Hondo Member Posts: 6,636 Member
    Options
    No Taste

    It sounds like you might be dealing with a damage nerves from the surgery. With me as the nerve died slowly I lost the ability to do what it was designed to do. My problem is all from the vagus nerve and it was damaged when I did my second rendition treatment. Before it gets any worse you might want to see a Neurologist just to be sure. My doctor had no idea what was happening and just keep telling me it was radiation side effects and did not office me any help. When it got so bad I finally found a good Neurologist here in Lafayette who has been giving me a lot of help and getting me on the right medication. But I waited too long, should have seen him years ago, don’t want the same to happen to you so get it checked as soon as you can.

     

    Tim Hondo

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    Options
    bill, i lost a lot of my

    bill, i lost a lot of my taste after the lary surgery and neck dissection.  what i could taste, didn't taste good.  that lasted about 1.5 yrs.  today there are still some things i can't eat because they taste bad and some i don't eat because i can't swallow them, but i eat pretty much everything.  it is odd that it is just now happening to you.  i'd definitely mention it to the doc.  like others said, it may be nerve damage.  i know i have a lot of nerve damage from my surgeries.  will be praying that you get answers and that this is a short term problem.  please let us know.

    God bless you,

    dj

  • wmc
    wmc Member Posts: 1,804
    Options
    Hondo said:

    No Taste

    It sounds like you might be dealing with a damage nerves from the surgery. With me as the nerve died slowly I lost the ability to do what it was designed to do. My problem is all from the vagus nerve and it was damaged when I did my second rendition treatment. Before it gets any worse you might want to see a Neurologist just to be sure. My doctor had no idea what was happening and just keep telling me it was radiation side effects and did not office me any help. When it got so bad I finally found a good Neurologist here in Lafayette who has been giving me a lot of help and getting me on the right medication. But I waited too long, should have seen him years ago, don’t want the same to happen to you so get it checked as soon as you can.

     

    Tim Hondo

    Thanks Tim

    I will get it checked. It's funny that when I swallow is where I have tast, just not on my toung. I have tested it with Pepsi, ice cream, oramge juice, and many others, all have no tast if just held in my mouth but when I swallow it is when I tast it and seems normal. Just a differant type of "The New ME" I guess.

    Thanks again Tim

    Bill

  • wmc
    wmc Member Posts: 1,804
    Options

    bill, i lost a lot of my

    bill, i lost a lot of my taste after the lary surgery and neck dissection.  what i could taste, didn't taste good.  that lasted about 1.5 yrs.  today there are still some things i can't eat because they taste bad and some i don't eat because i can't swallow them, but i eat pretty much everything.  it is odd that it is just now happening to you.  i'd definitely mention it to the doc.  like others said, it may be nerve damage.  i know i have a lot of nerve damage from my surgeries.  will be praying that you get answers and that this is a short term problem.  please let us know.

    God bless you,

    dj

    Debbie....Thank you

    Thanks Debbie. It's not really that bad to live with because when I swallow I tast it all. Just when I hold it in my mouth there is no tast. I was sure I would have tasted the Orange juice but didn't. I can't smell it to see if it was still good so I put a small amount in my mouth and did not swallow is how I found out. The date on the OJ was good and I just opened it so I thought It might tast rancid or something.   Guess it is the New ME atleast for awhile.

    Thanks again

    Bill

  • donfoo
    donfoo Member Posts: 1,773 Member
    Options
    must be nerves

    Hey Bill,

    Obviously no doc here and not read up on side effects of surgery only but it seems the only thing that could affect taste from surgery would be disrupted or damaged nerves. Good thing is I think nerves can improve so maybe some time things will get better. Also that could surely explain why only a portion of your tongue is affected. Let us kjnow what the docs says, would be inrteresting to know. Don

  • wmc
    wmc Member Posts: 1,804
    Options
    donfoo said:

    must be nerves

    Hey Bill,

    Obviously no doc here and not read up on side effects of surgery only but it seems the only thing that could affect taste from surgery would be disrupted or damaged nerves. Good thing is I think nerves can improve so maybe some time things will get better. Also that could surely explain why only a portion of your tongue is affected. Let us kjnow what the docs says, would be inrteresting to know. Don

    Thanks

    I know some of the loss of tast is surgery and the neck dissection, and having the laryngectomy has a lot to do with it. I get no air through my nose so it in a way doesn't work. When I swallow I think some smell gets to the base on my nose [pharnix] and do smell some aroma. But that just my guess. I will ask the Dr next time I see him.

    Thanks

    Bill

  • CivilMatt
    CivilMatt Member Posts: 4,723 Member
    Options
    answer sorta

    Bill,

    It sounds like you are going to need rads to legitimize your lack of taste (LOL).

    Matt

  • wmc
    wmc Member Posts: 1,804
    Options
    CivilMatt said:

    answer sorta

    Bill,

    It sounds like you are going to need rads to legitimize your lack of taste (LOL).

    Matt

    Matt........Thats the best

    Oh Matt that is so funny it took awhile to stop.Thank you for that.

  • TracyLynn72
    TracyLynn72 Member Posts: 839
    Options
    I know what you mean

    I definitely have more taste once I swallow than when the food is in my mouth (chewing).  It's hard to explain, but I do understand what you're saying :)  The side that I had surgery on seemed to damage that side of my tongue.  I can taste more on my right side and further back in my throat.  It HAS gotten better, but it's been over a year now. 

  • wmc
    wmc Member Posts: 1,804
    Options

    I know what you mean

    I definitely have more taste once I swallow than when the food is in my mouth (chewing).  It's hard to explain, but I do understand what you're saying :)  The side that I had surgery on seemed to damage that side of my tongue.  I can taste more on my right side and further back in my throat.  It HAS gotten better, but it's been over a year now. 

    Wow Thanks, I thought it was just me.

    Tracy Lynn thank you. I thought it was just me being wierd. I can still tast food, but unly when I swallow so I didn't notice what was happening. Now that I am aware, I notice some speces seem to burn the inside of my cheek and I mostly tast way back on the tongue only as I awallow. Where I should be tasting on my tongue I only have a slite tast of salt but it faint. It's only when I swallow food tasts normal. Well as normal as it can without smell.

    Thanks so much

    Bill

  • TracyLynn72
    TracyLynn72 Member Posts: 839
    Options
    wmc said:

    Wow Thanks, I thought it was just me.

    Tracy Lynn thank you. I thought it was just me being wierd. I can still tast food, but unly when I swallow so I didn't notice what was happening. Now that I am aware, I notice some speces seem to burn the inside of my cheek and I mostly tast way back on the tongue only as I awallow. Where I should be tasting on my tongue I only have a slite tast of salt but it faint. It's only when I swallow food tasts normal. Well as normal as it can without smell.

    Thanks so much

    Bill

    It's so weird

    what this disease, surgeries, treatments and all of it can do to your body!  I used to could taste things all the way to the tip of my tongue, but not any longer.  I can tell as time goes by that I'm able to taste more than I could but it's still further back in my mouth (beginning to swallow) where I get the most taste :)  If you are weird, then I'm right there with you!!  Cool