Severe pain

buzz99
buzz99 Member Posts: 404
in Head and Neck Cancer #1
Buzz finished treatment January 10, 2011 for Stage IV base of tongue cancer. He had chemo and radiation. Now he is having intermittent severe pain in the left side of his neck (both sides were radiated but the left more so). It hurts from the top of his head to his collar bone. We have a referral for physical therapy which doesn't start until the 19th. Has anyone experienced this pain? BTW, he can't take ibuprofen because he is on coumadin for a blood clot. Any ideas on what to do? Karen

Comments

  • Noellesmom
    Noellesmom Member Posts: 1,859 Member
    #2
    pain
    I'm sorry Buzz is having the pain he is.

    My husband finished treatment August 2010 for BOT and hypopharyngeal cancer and the pain has been a serious issue.

    He is currently seeing a pain specialist and takes Neurontin (for nerve damage pain), Cymbalta and hydrocodone. Jim has also had three nerve blocks with a fourth scheduled.

    It is our understanding that he will likely always experience some level of pain.

    Not sure what the physical therapy is for?
  • Greend
    Greend Member Posts: 678
    #3
    Noellesmom said:

    pain
    I'm sorry Buzz is having the pain he is.

    My husband finished treatment August 2010 for BOT and hypopharyngeal cancer and the pain has been a serious issue.

    He is currently seeing a pain specialist and takes Neurontin (for nerve damage pain), Cymbalta and hydrocodone. Jim has also had three nerve blocks with a fourth scheduled.

    It is our understanding that he will likely always experience some level of pain.

    Not sure what the physical therapy is for?

    Pain
    I had/have it but didn't show up for 13 years. Mine is damage to the trigeninal nerve. Affect face, ears, neck and back.

    I doubt this is your problem but worth asking if they are stumped.

    Treatment is pain pills for me' PT actually made it worse.
  • sweetblood22
    sweetblood22 Member Posts: 3,228
    #4
    Greend said:

    Pain
    I had/have it but didn't show up for 13 years. Mine is damage to the trigeninal nerve. Affect face, ears, neck and back.

    I doubt this is your problem but worth asking if they are stumped.

    Treatment is pain pills for me' PT actually made it worse.

    This is really strange.
    I woke up in severe pain this morning. Woke me out of a dead sleep. More like Denny's though. The pain was super sharp, and seriously intense. It ran from my left shoulder blade, up my neck and straight up the back of my head to the top. It's happened four times today. I tried to stretch it out after they subsided. I'm hoping this is not a new thing, because I have to tell you, it freakin' hurts. Like cry out in pain hurt.

    I've never quite felt anything like that. Not sure if it was nerve pain? I don't think that was a muscle spasam.
  • luv4lacrosse
    luv4lacrosse Member Posts: 1,410 Member
    #5
    sweetblood22 said:

    This is really strange.
    I woke up in severe pain this morning. Woke me out of a dead sleep. More like Denny's though. The pain was super sharp, and seriously intense. It ran from my left shoulder blade, up my neck and straight up the back of my head to the top. It's happened four times today. I tried to stretch it out after they subsided. I'm hoping this is not a new thing, because I have to tell you, it freakin' hurts. Like cry out in pain hurt.

    I've never quite felt anything like that. Not sure if it was nerve pain? I don't think that was a muscle spasam.

    SAME
    I too have been experiencing some intermittent pain that seems to start inside my right ear canal and goes up through the back or side of my head. It starts out small and intensifies over about 10-30 seconds and goes away the same way.

    I may experience several times during a day, or not have it at all for several days to a week.

    Might it be nerves starting to heal?
  • Greend
    Greend Member Posts: 678
    #6
    luv4lacrosse said:

    SAME
    I too have been experiencing some intermittent pain that seems to start inside my right ear canal and goes up through the back or side of my head. It starts out small and intensifies over about 10-30 seconds and goes away the same way.

    I may experience several times during a day, or not have it at all for several days to a week.

    Might it be nerves starting to heal?

    Heal might be the wrong word I hate to say
    I think scar might be right....but I'm not a doctor so ask one.

    Dawn

    Be careful if you get it massaged. If/when they press the wrong spot it makes mine worse. Hot tub/showers or heating pad give me the most relief.
  • sweetblood22
    sweetblood22 Member Posts: 3,228
    #7
    Greend said:

    Heal might be the wrong word I hate to say
    I think scar might be right....but I'm not a doctor so ask one.

    Dawn

    Be careful if you get it massaged. If/when they press the wrong spot it makes mine worse. Hot tub/showers or heating pad give me the most relief.

    It happend once this
    It happend once this morning, just before I got in the shower. Maybe I will charge up my neck wrap flax seed thingie in the microwave and put some heat on it later. Its so nasty and damp today, would probably feel good anyway.

    So does what I described sound like what you were taking about? And what is the cause of it?
  • Greend
    Greend Member Posts: 678
    #8
    Greend said:

    Pain
    I had/have it but didn't show up for 13 years. Mine is damage to the trigeninal nerve. Affect face, ears, neck and back.

    I doubt this is your problem but worth asking if they are stumped.

    Treatment is pain pills for me' PT actually made it worse.

    Clarify
    I said possible scar tissue however I also need to say that mine did not have scar issue (some may recall they were going to try a new treatment if it was scar tissue) rather it is damage form rads which normally do not show up until around seven years poat treatment. Some facts are under superthread "dysphagia"
  • sweetblood22
    sweetblood22 Member Posts: 3,228
    #9
    Greend said:

    Clarify
    I said possible scar tissue however I also need to say that mine did not have scar issue (some may recall they were going to try a new treatment if it was scar tissue) rather it is damage form rads which normally do not show up until around seven years poat treatment. Some facts are under superthread "dysphagia"

    Thanks. Nothing like
    Thanks. Nothing like throwing my own superthread right back at me to read. Hahaha. I find that funny.
  • Hondo
    Hondo Member Posts: 6,636 Member
    #10
    Greend said:

    Heal might be the wrong word I hate to say
    I think scar might be right....but I'm not a doctor so ask one.

    Dawn

    Be careful if you get it massaged. If/when they press the wrong spot it makes mine worse. Hot tub/showers or heating pad give me the most relief.

    Heating Pad
    Denny, I agree when my pain gets to bad and I have already took all the pain meds, I get out my hot pad and heat it up for about 2 min, then rap it around my neck, jaw and head, makes me fall to sleep.
    Hondo
  • jim and i
    jim and i Member Posts: 1,788 Member
    #11
    Jim had severe pain like
    Jim had severe pain like everyone is describing is the pain Jim had for three years prior to diagnosis. They treated him for nerve damage. The pain subsided when the tumor started to shrink so maybe it is scar tissue pressing on the nerve. My question is, "Did all of you experiencing the pain have surgery?" Jim will absolutely flip out if that horrible pain returns, nothing helped it and he gets really weird on even the mildest pain meds. They make him confused and he wanders around naked, even outside if he gets past me.

    Debbie
  • KristynRuth
    KristynRuth Member Posts: 21
    #12
    jim and i said:

    Jim had severe pain like
    Jim had severe pain like everyone is describing is the pain Jim had for three years prior to diagnosis. They treated him for nerve damage. The pain subsided when the tumor started to shrink so maybe it is scar tissue pressing on the nerve. My question is, "Did all of you experiencing the pain have surgery?" Jim will absolutely flip out if that horrible pain returns, nothing helped it and he gets really weird on even the mildest pain meds. They make him confused and he wanders around naked, even outside if he gets past me.

    Debbie

    sigh
    I'm so sorry your poor husband is having so much pain. I wish I had advice to offer, I just wanted to say I'll keep him in my prayers. Hope he feels better sooner than later. Take lots of care.
  • Greend
    Greend Member Posts: 678
    #13
    Sweet's superthread
    I smiled when I wrote that but fact is when I first readthe superthreadt I had no idea what dysphagia was so I skipped it (like I did many of the other topics that didn't direcly relate to me, or so I thought). Only after I saw the term in my records did I go back and read it. Not only that but provided a copy to both my GP and my ENT. ENT said it is so rare that he doesn't stay up to date on it like he should - yes he is a great ENT in my opinion. Tells me the truth.
  • connieprice1
    connieprice1 Member Posts: 300 Member
    #14
    Hi Karen, I just wanted Buzz
    Hi Karen, I just wanted Buzz to know that we are hoping the therapy helps aleviate his pain. The side effects of cancer treatment just seem to be endless sometimes. Hopefully this is a temporary condition and soon Buzz can relax a little. Either way Connie and I are always pulling for you guys. Your friends, Homer & Connie
  • buzz99
    buzz99 Member Posts: 404
    #15
    connieprice1 said:

    Hi Karen, I just wanted Buzz
    Hi Karen, I just wanted Buzz to know that we are hoping the therapy helps aleviate his pain. The side effects of cancer treatment just seem to be endless sometimes. Hopefully this is a temporary condition and soon Buzz can relax a little. Either way Connie and I are always pulling for you guys. Your friends, Homer & Connie

    Thanks Homer and Connie
    Thanks for your kind words. The pain and stiffness goes on and on. Buzz took 2 lortab in preparation for his PET scan yesterday hoping that the neck wouldn't seize up in the scanner. The scan went well but he slept all day! Karen

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