Swollen epiglottis

michdjp
michdjp Member Posts: 220
in Head and Neck Cancer #1
Hello to all,

My dad is 14 weeks since his last chemo and radiation treatment. We have had 8 weeks of speech therapy (a swallow study showed us a swollen epiglottis which was not flipping well making swallowing foods difficult) we had a ct scan which showed Ned and a scope as well so the big picture is a blessing. However has anyone ever had a swollen epiglottis hindering their swallow. It is very frustrating for my dad who I know just wants a piece of Italian bread with butter! So far only Lipton noodle soup goes down o.k. I have read about vitalstim which is a stimulation of the throat muscles and the rad and onc and gi dr. Say it is a bit early to try throat dilitation. The speech therapist says this wouldn't help as his problem is much higher (in the epiglottis not the throat). He has a peg tube so we are getting enough nutrition but he is soooo done with that!!!
I would really appreciate any advice with this.
Thanks,
Michelle

Comments

  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    #2
    Swelling = lymphedema
    His swelling is related to the radiation. Rads can cause lymphedema in a variety of neck structures. Time will solve it, but dilation won't. Dilation is for strictures only. Is he sleeping lying flat on his back, or partially sitting? Gravity is really an enemy for people with this problem, and his epiglottis will be worse if he's spending nights lying down as opposed to at least partially sitting.

    How much time, you wonder? I don't know. I know that 14 weeks is not enough for some of us. My own swelling, after my last surgery, was still slightly present even a year after.


    Best regards

    Pat
  • michdjp
    michdjp Member Posts: 220
    #3
    longtermsurvivor said:

    Swelling = lymphedema
    His swelling is related to the radiation. Rads can cause lymphedema in a variety of neck structures. Time will solve it, but dilation won't. Dilation is for strictures only. Is he sleeping lying flat on his back, or partially sitting? Gravity is really an enemy for people with this problem, and his epiglottis will be worse if he's spending nights lying down as opposed to at least partially sitting.

    How much time, you wonder? I don't know. I know that 14 weeks is not enough for some of us. My own swelling, after my last surgery, was still slightly present even a year after.


    Best regards

    Pat

    Thanks
    Thank you and I'm glad to hear that time of course we all know heals all but while you are waiting or like me, watching, it so hard. He has not laid on his back since the phlegm began back when and even though it has stopped he is so used to lying on either of his sides that is how he has continued. During the day he naps sleeping in the recliner. I do, however, notice his neck and face does seem swollen at times. What helps this, again, time probably. As his daughter, all I want to do is help fix everything.
    Thank you for your reply
    Michelle
  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    #4
    michdjp said:

    Thanks
    Thank you and I'm glad to hear that time of course we all know heals all but while you are waiting or like me, watching, it so hard. He has not laid on his back since the phlegm began back when and even though it has stopped he is so used to lying on either of his sides that is how he has continued. During the day he naps sleeping in the recliner. I do, however, notice his neck and face does seem swollen at times. What helps this, again, time probably. As his daughter, all I want to do is help fix everything.
    Thank you for your reply
    Michelle

    I know how you must feel
    With my first surgery, which was just a radical neck dissection, after being dismissed from the hospital, I decided to stay overnight in a loccal hotel. At 3AM I awoke, feeling like something was obstructing my windpipe. Panic! I tried to get ahold of my ENT Oncologist for instructions, hoping to avoid taking up his time in the ER, and ran into a bunch of interference from the hospital switcchboard. At 5AM I finally reached him. He was already making rounds at the hospital, and agreed to meet me on the floor and examine me in the inpatient proceedure room. The funny thing about this was, by the time I got there, my symptoms were much better. Of course, that was 3 hours after getting up, which was significant in that it was laying flat which had caused the edema to begin with. I was embarassed. He wasn't upset, as I guess this is a pretty common result.

    Make certain when he lies down his head is higher than his heart. That ensures optimum drainage. And I guess that makes sense when you think about it. It always takes longer than you can imagine to get past these problems.

    I'm getting radiated now for the second time, and I've now had a whole bunch of surgery. My lymphedema, which was almost gone from surgery a year ago, is returning. Sigh. That's just how these things go.

    Pat
  • michdjp
    michdjp Member Posts: 220
    #5
    longtermsurvivor said:

    I know how you must feel
    With my first surgery, which was just a radical neck dissection, after being dismissed from the hospital, I decided to stay overnight in a loccal hotel. At 3AM I awoke, feeling like something was obstructing my windpipe. Panic! I tried to get ahold of my ENT Oncologist for instructions, hoping to avoid taking up his time in the ER, and ran into a bunch of interference from the hospital switcchboard. At 5AM I finally reached him. He was already making rounds at the hospital, and agreed to meet me on the floor and examine me in the inpatient proceedure room. The funny thing about this was, by the time I got there, my symptoms were much better. Of course, that was 3 hours after getting up, which was significant in that it was laying flat which had caused the edema to begin with. I was embarassed. He wasn't upset, as I guess this is a pretty common result.

    Make certain when he lies down his head is higher than his heart. That ensures optimum drainage. And I guess that makes sense when you think about it. It always takes longer than you can imagine to get past these problems.

    I'm getting radiated now for the second time, and I've now had a whole bunch of surgery. My lymphedema, which was almost gone from surgery a year ago, is returning. Sigh. That's just how these things go.

    Pat

    I'm so sorry to hear you
    I'm so sorry to hear you have to go thru this again but I will keep you in my prayers. Just watching someone go thru this you gain a lot of respect for all they have to endure. You are a strong individual and will battle back.
    All the best to you and I thank you for taking the time to help with our problems.
    Michelle
  • D Lewis
    D Lewis Member Posts: 1,581 Member
    #6
    longtermsurvivor said:

    I know how you must feel
    With my first surgery, which was just a radical neck dissection, after being dismissed from the hospital, I decided to stay overnight in a loccal hotel. At 3AM I awoke, feeling like something was obstructing my windpipe. Panic! I tried to get ahold of my ENT Oncologist for instructions, hoping to avoid taking up his time in the ER, and ran into a bunch of interference from the hospital switcchboard. At 5AM I finally reached him. He was already making rounds at the hospital, and agreed to meet me on the floor and examine me in the inpatient proceedure room. The funny thing about this was, by the time I got there, my symptoms were much better. Of course, that was 3 hours after getting up, which was significant in that it was laying flat which had caused the edema to begin with. I was embarassed. He wasn't upset, as I guess this is a pretty common result.

    Make certain when he lies down his head is higher than his heart. That ensures optimum drainage. And I guess that makes sense when you think about it. It always takes longer than you can imagine to get past these problems.

    I'm getting radiated now for the second time, and I've now had a whole bunch of surgery. My lymphedema, which was almost gone from surgery a year ago, is returning. Sigh. That's just how these things go.

    Pat

    What Pat said....
    I am over 20 months out from end of treatment, and I still have lymphedema in my neck. I use one of those bed wedge pillows (usually advertised as being for folks with acid reflux). I put my regular pillow on that, for additional elevation. I've noticed it does help with the lymphedema.

    Deb
  • Sooner79
    Sooner79 Member Posts: 29
    #7
    D Lewis said:

    What Pat said....
    I am over 20 months out from end of treatment, and I still have lymphedema in my neck. I use one of those bed wedge pillows (usually advertised as being for folks with acid reflux). I put my regular pillow on that, for additional elevation. I've noticed it does help with the lymphedema.

    Deb

    Me too
    I am eight months out and I also experience lymphedema most of the time. I don't know if there is any connection or not, but I think it tends to be worse when my salt intake is higher than normal. Is that possible?
  • Jamie_Ann
    Jamie_Ann Member Posts: 35
    #8
    I too have swollen epiglottis...
    The surgeon actually describes it as "asymetrical and bulky". They have done scopes and a PET. So far everyone is just saying it is treatment related inflammation/scarring. I'm not sure there is much they can do for it, I was just told to avoid the foods which caused choking. I did struggle with certain consistencies initially but over time (I'm 7 months out from treatment) I've gotten to the point where, in the last few months, I don't choke on my liquids nearly as much as I was. I like to think it means things are getting back to normal in there. :-) Give it a little more time! Healing can take many months and as he heals, you may find it bothers him less and less!
  • michdjp
    michdjp Member Posts: 220
    #9
    Jamie_Ann said:

    I too have swollen epiglottis...
    The surgeon actually describes it as "asymetrical and bulky". They have done scopes and a PET. So far everyone is just saying it is treatment related inflammation/scarring. I'm not sure there is much they can do for it, I was just told to avoid the foods which caused choking. I did struggle with certain consistencies initially but over time (I'm 7 months out from treatment) I've gotten to the point where, in the last few months, I don't choke on my liquids nearly as much as I was. I like to think it means things are getting back to normal in there. :-) Give it a little more time! Healing can take many months and as he heals, you may find it bothers him less and less!

    My dads swallow study also
    My dads swallow study also says the same thing asymmetrical and bulky. Amazing. Well I'm glad to hear you are doing better as it gives us hope. I know the "time healing" is sooo frustrating but at least there is light at the end of the tunnel (I believe this and tell him everyday but your progress is uplifting).
    Thank you and continue to feel good.
    Michelle

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