Laryngectomees Heads Up

patricke
patricke Member Posts: 570 Member
in Head and Neck Cancer #1

Hey guys (unigender) it would appear that there are a number of folks here who, like me, are laryngectomees.  So, I just want to give this heads up to everyone, in case someone does not know, about the International Association of Laryngectomees (IAL) on the web; and Webwhispers, a daily e-mail forum for larys.  The IAL and WW are rich resources for information and question answering for all things laryngectomee, and another great support group.  I'm wish'in everyone is having the best holiday possible!  

PATRICK   

Comments

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    #2
    Patrick, i'm a member of both

    Patrick, i'm a member of both and agree, both are great groups for information.  thank you for taking time to share this b/c as you said, there are a few of us larys here now, unfortunately.  i hope the others will check out these sites.  i'm sure they will find them useful.

    dj

  • wmc
    wmc Member Posts: 1,804
    #3
    Thanks Patrick

    I'm on WW already but not the IAL. Still thinking about them and the jury's still out. LOL

    Bill

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    #4
    questions for you larys:
    1. 

    questions for you larys:

    1.  were you told that you have 100s of clamps in your neck since the lary surgery?  that's what i was told today.  said it was necessary to close off all the blood vessels.

    2.  were you told that they removed your Hyoid Bone during lary surgery?  I was told today that it was removed during that surgery and that is standard during lary surgery.

    3.  have you ever been told you should have cartoid doppler tests?  i read that here some time ago but my doc said they will only do it if i have symptoms.  he didn't say what the "symptoms" are tho.

    4.  do you know of anything else that's removed during a lary surgery?  if so, what.  its been 2 yrs and 4 months since my surgery and i'm still finding out just what happened during that surgery :0(

    any info will be appreciated.  i hope you aren't surprised about your surgery and what all happened like i was/am.

    dj

  • patricke
    patricke Member Posts: 570 Member
    #5
    debbiejeanne said:

    questions for you larys:
    1. 

    questions for you larys:

    1.  were you told that you have 100s of clamps in your neck since the lary surgery?  that's what i was told today.  said it was necessary to close off all the blood vessels.

    2.  were you told that they removed your Hyoid Bone during lary surgery?  I was told today that it was removed during that surgery and that is standard during lary surgery.

    3.  have you ever been told you should have cartoid doppler tests?  i read that here some time ago but my doc said they will only do it if i have symptoms.  he didn't say what the "symptoms" are tho.

    4.  do you know of anything else that's removed during a lary surgery?  if so, what.  its been 2 yrs and 4 months since my surgery and i'm still finding out just what happened during that surgery :0(

    any info will be appreciated.  i hope you aren't surprised about your surgery and what all happened like i was/am.

    dj

    Hey DJ,

    My surgery was three years ago as of June, and my docs didn't tell me anything about what was removed other than the tumor on my trachea entrance, and of course, my dearly departed larynx.  You have raised some interesting questions.  I have no idea whether or not I have a major clamp down going on with my blood vessels, wow, that sounds way over the top, and I would think would be very uncomfortable!!  Can you feel them?  

    I don't know if my Hyoid Bone is still residing in the vicinity of my neck or not; another interesting question. 

    Now then, about the cartoid doppler tests recommendations, no they have not recommended them.

    I'm sorry that I don't have anymore information to offer.  These would be great questions for Webwhispers, I'm sure there are a number of folks therewho have a lot of information about lary surgery. 

    PATRICK

  • Ladylacy
    Ladylacy Member Posts: 773 Member
    #6
    Stuff Removed

    Our head and neck specialist didn't tell us about anything that was removed or clamped other than the larynx, lymph nodes, the tumor and half of my husband's thyroid.  In fact I have a copy of the operating report, and it doesn't state anything about the hyoid bone or clamps.

    As far as a checking the arteries in the neck, it was our primary who said it should be done since Joe had undergone radiation (72 rounds).  Said it should be done yearly.  You should submit this information to Webwhispers and see what people say there as they are great questions.

    Sharon

  • lornal
    lornal Member Posts: 428
    #7
    debbiejeanne said:

    questions for you larys:
    1. 

    questions for you larys:

    1.  were you told that you have 100s of clamps in your neck since the lary surgery?  that's what i was told today.  said it was necessary to close off all the blood vessels.

    2.  were you told that they removed your Hyoid Bone during lary surgery?  I was told today that it was removed during that surgery and that is standard during lary surgery.

    3.  have you ever been told you should have cartoid doppler tests?  i read that here some time ago but my doc said they will only do it if i have symptoms.  he didn't say what the "symptoms" are tho.

    4.  do you know of anything else that's removed during a lary surgery?  if so, what.  its been 2 yrs and 4 months since my surgery and i'm still finding out just what happened during that surgery :0(

    any info will be appreciated.  i hope you aren't surprised about your surgery and what all happened like i was/am.

    dj

    Surgical Notes

    I actually got the surgical notes.  Interesting read.  Included ALL the biopsy reports as well.  I didn't understand it all, but now I understand why it took 12 hours.

    Lorna 1/2014

  • wmc
    wmc Member Posts: 1,804
    #8
    debbiejeanne said:

    questions for you larys:
    1. 

    questions for you larys:

    1.  were you told that you have 100s of clamps in your neck since the lary surgery?  that's what i was told today.  said it was necessary to close off all the blood vessels.

    2.  were you told that they removed your Hyoid Bone during lary surgery?  I was told today that it was removed during that surgery and that is standard during lary surgery.

    3.  have you ever been told you should have cartoid doppler tests?  i read that here some time ago but my doc said they will only do it if i have symptoms.  he didn't say what the "symptoms" are tho.

    4.  do you know of anything else that's removed during a lary surgery?  if so, what.  its been 2 yrs and 4 months since my surgery and i'm still finding out just what happened during that surgery :0(

    any info will be appreciated.  i hope you aren't surprised about your surgery and what all happened like i was/am.

    dj

    Answers...I hope

    #1  NO Never told or read about clamps of blood vessels. Does talk about cautery of blood vessels.

    #2  NO, I have the surgery notes [ the same report he sent my doctor that sent me to him],and it does not say it was         removed, only outlined, [marked]. Your tongue conects to it.

    #3  No, never told. You would have to have signs that you had blood flow problems in that artery.

    #4  I have read the surgery notes many times and just alot of muceles, some cut just to let the air go up [when you           use the TEP] instead of going downword. It has the size of scaple used and even what stiches and size and type         used. It is very detailed including pathology reports of everything tested.

    Hope this helps DJ

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    #9
    patricke said:

    Hey DJ,

    My surgery was three years ago as of June, and my docs didn't tell me anything about what was removed other than the tumor on my trachea entrance, and of course, my dearly departed larynx.  You have raised some interesting questions.  I have no idea whether or not I have a major clamp down going on with my blood vessels, wow, that sounds way over the top, and I would think would be very uncomfortable!!  Can you feel them?  

    I don't know if my Hyoid Bone is still residing in the vicinity of my neck or not; another interesting question. 

    Now then, about the cartoid doppler tests recommendations, no they have not recommended them.

    I'm sorry that I don't have anymore information to offer.  These would be great questions for Webwhispers, I'm sure there are a number of folks therewho have a lot of information about lary surgery. 

    PATRICK

    no, Patrick, I can't feel the

    no, Patrick, I can't feel the clamps.  i only learned about them reading the op report....lol.  you may want to ask about the doppler test if you had radiation.  radiation and damage those arteries.  its good to know i'm not the only one who doesn't know everything about their major surgery, it shows its not just my doctor not taking time to explain everything.  maybe there would just be too much to explain with this major surgery.

    dj

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    #10
    debbiejeanne said:

    questions for you larys:
    1. 

    questions for you larys:

    1.  were you told that you have 100s of clamps in your neck since the lary surgery?  that's what i was told today.  said it was necessary to close off all the blood vessels.

    2.  were you told that they removed your Hyoid Bone during lary surgery?  I was told today that it was removed during that surgery and that is standard during lary surgery.

    3.  have you ever been told you should have cartoid doppler tests?  i read that here some time ago but my doc said they will only do it if i have symptoms.  he didn't say what the "symptoms" are tho.

    4.  do you know of anything else that's removed during a lary surgery?  if so, what.  its been 2 yrs and 4 months since my surgery and i'm still finding out just what happened during that surgery :0(

    any info will be appreciated.  i hope you aren't surprised about your surgery and what all happened like i was/am.

    dj

    thanks for all the good

    thanks for all the good replies.  i will ask these questions on ww.  have a wonderful day all.

    dj

  • Hondo
    Hondo Member Posts: 6,636 Member
    #11
    Hi Patrick

     

    I am not at that point just yet but who know with me and all my problems, good information to have in case.

     

    Tim Hondo

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