Neck discomfort 17 months out

kgasmart
kgasmart Member Posts: 64 Member
in Head and Neck Cancer #1

Laser surgery for BOT HPV+ cancer in December 2017, modified radical neck dissection/both side, took 57 lymph nodes/cancer only spread to 1, doc called it an "indolent" cancer.  30 rads in Feb-March 2018. Just had a CT scan of neck soft tissues last month, all clear.

 

My problem is neck discomfort. There's always been some, and I've had moderate lymphedema; but over the past month or so the way the neck feels has changed; I'm getting a pretty consistent globus sensation, below the Adam's apple. No pain, just tightness and what feels like pressure on the windpipe. Can still eat and drink fine, but uncomfortable - but the odd thing is, when I wear the Jobst neck support garment, I don't feel it at all. Like, zero.

 

I went to my local ENT who said it might be complications of GERD, which I was diagnosed with 30 years ago; I take Omeprazole and she said I was taking it wrong, after meals instead of before. OK, now I'm doing it the right way but it didn't make a difference.

 

She did feel/examine my neck, no bumps/signs of nodes; did a laryngoscopy, saw what looked like slight inflammation of the vocal cords which led her to the GERD conclusion, but that was it.

 

Have a follow-up with my surgeon next month.

 

Wondering if this could be a late side effect of either the surgery, the dissection, the radiation? "Dr. Google" suggests it could be cricopharyngeal spasms, anyone have any experience with that?

 

Ugh. Some days gets depressing, thinking you're going to just have to deal with discomfort the rest of the way. But I guess the alternative is way worse.

 

 

Comments

  • ERomanO
    ERomanO Member Posts: 323 Member
    #2
    I am 6 weeks away from my one

    I am 6 weeks away from my one year mark and the neck stiffneess has gotten better.  I did not have a neck dissection, but I was told right from the get-go that radiation affects the neck muscles and that I have to stretch them everyday, otherwise in 5-10 years I'll no longer be able to turn my head, so I stretch it every day.  All I know is that all these side effects and symtoms never seem to stay the same... always changing.

  • kgasmart
    kgasmart Member Posts: 64 Member
    #3
    ERomanO said:

    I am 6 weeks away from my one

    I am 6 weeks away from my one year mark and the neck stiffneess has gotten better.  I did not have a neck dissection, but I was told right from the get-go that radiation affects the neck muscles and that I have to stretch them everyday, otherwise in 5-10 years I'll no longer be able to turn my head, so I stretch it every day.  All I know is that all these side effects and symtoms never seem to stay the same... always changing.

    I know, right?

    For a long time the neck felt different every single day; for the past 4-5 weeks it's mostly been this globus thing. Yesterday was a good day, didn't really feel it at all. Today it's back, no idea why - over the weekend I used the KT tape on the neck, maybe that helped. Maybe it's all in my head. Gah.

     

    And I've been derelict about stretching; I haven't had any issues with trismus, I haven't really had much neck stiffness so while I do the lympedema massages every morning I really don't stretch the neck - I need to start. 

  • ERomanO
    ERomanO Member Posts: 323 Member
    #4
    kgasmart said:

    I know, right?

    For a long time the neck felt different every single day; for the past 4-5 weeks it's mostly been this globus thing. Yesterday was a good day, didn't really feel it at all. Today it's back, no idea why - over the weekend I used the KT tape on the neck, maybe that helped. Maybe it's all in my head. Gah.

     

    And I've been derelict about stretching; I haven't had any issues with trismus, I haven't really had much neck stiffness so while I do the lympedema massages every morning I really don't stretch the neck - I need to start. 

    I have some lymphedema, but

    I have some lymphedema, but when it first showed up i was still at least 20 lbs lighter, so it was failry noticeable.  Now that I'm back up to my normal weight it's only slightly noticeable in the morning.  As soon as I'm vertical for a bit it goes away.  My one oncologist said the lymphedema will "wax and wane", but it has mostly been waning.  Lucky, I guess.

  • johnsonbl
    johnsonbl Member Posts: 266 Member
    #5
    I'm 2 years out from end of treatment....

    TORS surgery and radiation...  I also have this...  Not worried about it and not more than an annoyance to me.  But I suspect, as many others have said, that the deterioration of the muscles and structures of the neck/throat will continue to progress over the next 30 years.  The fortunate thing is that I feel like I'll be around another 30 years.

     

    Brandon

  • ERomanO
    ERomanO Member Posts: 323 Member
    #6
    johnsonbl said:

    I'm 2 years out from end of treatment....

    TORS surgery and radiation...  I also have this...  Not worried about it and not more than an annoyance to me.  But I suspect, as many others have said, that the deterioration of the muscles and structures of the neck/throat will continue to progress over the next 30 years.  The fortunate thing is that I feel like I'll be around another 30 years.

     

    Brandon

    Constant stretching should

    Constant stretching should help, I would think.  Neck muscles are like any others in that the stronger they are the more blood flow.  Like I said in an earlier post, my oncology doc/nurse told me that "patients that workout fare better", and I am putting that advice to the test.

  • kgasmart
    kgasmart Member Posts: 64 Member
    #7
    johnsonbl said:

    I'm 2 years out from end of treatment....

    TORS surgery and radiation...  I also have this...  Not worried about it and not more than an annoyance to me.  But I suspect, as many others have said, that the deterioration of the muscles and structures of the neck/throat will continue to progress over the next 30 years.  The fortunate thing is that I feel like I'll be around another 30 years.

     

    Brandon

    Glad to hear I'm not the only one...

    Annoyance loves company.

     

    I think you're right though, changes to the neck/throat/muscles are likely to continue as long as I do. Ugh.

  • johnsonbl
    johnsonbl Member Posts: 266 Member
    #8
    ERomanO said:

    Constant stretching should

    Constant stretching should help, I would think.  Neck muscles are like any others in that the stronger they are the more blood flow.  Like I said in an earlier post, my oncology doc/nurse told me that "patients that workout fare better", and I am putting that advice to the test.

    I agree...

    I'm just a stubborn, terrible patient...  I want to believe that just doing my thing and going about my life should be enough.  I should work at it...but don't.  

  • donfoo
    donfoo Member Posts: 1,773 Member
    edited May 2019 #9
    pretty common

    I'm 5 years out and since the first year have been dealing with neck tightness, spasms, etc. For me, it clearly follows the radiated pattern. Daily neck and shoulder muscle stretching, neck turning, etc. keeps in check for me.

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