Looking for people who have experianced a full laryngectomy surgery.

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SharonCK
SharonCK Member Posts: 1
in Head and Neck Cancer #1

I had a complete laryngectomy on OCT 20 2014 and am having a hard time coping, I would like to talk to some one who has gone through this. I have many questions and concerns that a Doc with no personal experiance can help me with.

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  • Ladylacy
    Ladylacy Member Posts: 773 Member
    #2
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    Surgery

    My husband had a laryngectomy in March of 2011.  While this is a great site and wonderful people to answer your questions, there are not too many laryngectomees on this site.   WWW.Webwhispers.org is a site that is for laryngectomees and has great information on it regarding your type of surgery.  We have found during our journey that if you have the right doctor you can get great help from them and their office staff.  Our local ENT diagnosed my husband right away with laryngeal cancer and then proceeded to do a biopsy after a PET/CT scan.  He was an older gentlemen and was great.  After treatment, radiation and chemo, his partner found out that the tumor was still there and growing so we were referred to a head and neck specialist who had a lot of experience and we were extremely grateful for this specialist and this referral.  Our local ENT said that my husband needed a head and neck specialist who was experienced to do the surgery.  He had done them before but had stopped because he felt my husband needed a specialist who had done the surgery and one that could handle any problems he ran into.  Which there was a major problem for my husband and that was that the radiation had damaged his throat and it had to be reconstruction and the specialist was able to do that during the surgery.  

    There are not a lot of laryngectomees in this country today so many don't know or understand what a person goes thru with this type of health problem.  My husband is on in-home hospice and has been since September 2013 and while hospice has been great, the nurses admitted upfront that they have no experience with a patient who has gone thru a laryngectomy so I have had to explain to them what is needed for his care.  I also notified 911, our local fire department and police department that my husband had his voice box removed due to cancer so that if he ever had to call 911 they would have it on record.  

    Wishing you the best -- Sharon

  • wmc
    wmc Member Posts: 1,804
    #3
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    Welcome to the H&N Group

    Welcome to the group and like Sharon said there is only a few here, about seven or eight. I had my laryngectony Oct 2 2013 and will answer what I can. It is a major change in life but when you get the right help and understand it then you get to where you need to be, accepting it. There is only 60,000 in the entire US and most doctors and hospitals have never delt with one. So you will need to contact your local 911 operator and have them put in your file that he is a total neck breather, and might not be able to talk when he calls 911 and can only bang on the phone. They well add this to your home phone number and that will let fire, police,and paramedics know before they get their.

    My questions to you are; Did he have chemo or Radiation? Does he talk now with an EL [electronic larnyx, vibrates so he can talk]? Does he have a TEP [prosthesis in his neck to talk]? Was this done local or at a major cancer hospital like UCLA, Stanford, Mayo, MDA, as that can matter as well.

    It sounds like he has never been sent to a SLP [speech-language pathologist] This is a person who will help teach him to swallow food again and learn to talk again as all has to be relearned. Some get lucky and don't need that. The SLP is also the one who changes the TEP if he has one. Now every town might have an SLP but they do not work with laryngectonee. My town has about seven and none will see me. There is only one that is 50 miles away and that town has over 350000 population. I drive to Stanford which is 215 miles away to have mine changed. [I live in California]

    Where was his cancer at that caused the surgery. Was it bace of tounge or larnx? The reason I ask is it will let me know how hard it might be for him to talk. I only had surgery and removed my larynx, No chemo or radiation, so it was much easier for me to talk. If you feel more confortable answering this direct, please feel free to do so. I'm sure the others will chime in and try to answer all your questions. 

    As Sharon said the WebWhispers is only for larys and there people all over the world and can help as well. They have a wonderful library as well that can answer many of your questions.

    If you ckick on my name on the side of this it will take you to my page and you can go to Expressions and see photos . I hope this helps some.

    Bill

     

  • wmc
    wmc Member Posts: 1,804
    #4
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    Sorry I read your bio

    Sorry I responded before reading your bio. My questions were all answered, but have you been sent to an SLP, and how do you talk now. By the way some depression goes with this but when you understand it will get better and much less, more on the line ox axinity. I have even answered the phone and forgot to block my stoma so I could talk, I felt like my old self, but the "New Normal" will get better.

    Bill

  • lornal
    lornal Member Posts: 428
    #5
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    Hi Sharon

    I'm also another Larnynectomy.  There are a couple of others on this site that haven't chimed in yet - Patricke and DebbieJean

    We are all members of WebWhispers and it is a great site to learn about living as a laryngectomee.

    Web Whispers also has a Facebook group - which is a lot of fun.

    I am 52 years old and live in St. Louis.  I had my laryngectomy on January 16, 2014.  I also had difficulty swallowing and lost my voice.  I even ended up with a feeding tube.  All the doctors I saw (and there were lots of them - GI and ENTs) all said it was because of radiation scar tissue from my 2007 tonsil cancer.

    THis time, I just had surgery, and did not need radiation or chemo. 

    About a month after the surgery, I was able to eat - and now I can eat just about anything I want.

    Depression comes with the territory.  I was put on meds right after my surgery.  I tried to get off the meds this summer - but I wasn't ready.

    I'm almost a year out - and I am still not back 100%.  I might not ever be.  Fortuanately, I do have long term disability, and am able to work part time at my job and still get the disability.

    Feel free to send a message if you have any questions.

    Lorna 2007 & 2014

  • Hondo
    Hondo Member Posts: 6,636 Member
    #6
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    Hi Sharon

     

     

    I can’t help because I am NPC but all the same I like to Welcome you to our family here on CSN H&N. God Bless and give you the strength you need to cope with your new normal you.

     

    Tim Hondo

  • phrannie51
    phrannie51 Member Posts: 4,716
    #7
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    Hi Sharon, and welcome....

    to our little home away from home.  I'm glad you came here, even if there aren't many laryngectomees here, we are a great resource for leading you to where there are more people who have gone through what you have gone through.  I had NPC, and was treated for that....however my mom went through a complete laryngctomy in 1999, so I do have some idea what you're going through.  I do remember her going through a period of depression in the first 2 or 3 months after the surgery....I think most of that was because communication was so difficult.  She ended up getting the TEP and she was off and running, once she could talk. 

    There is a Facebook group with a number of laryngectomees on it.....it's a hidden group, and you need an "invite" to get in.  Do you have a Facebook account?  If you can befriend me on there, I can get you into the group....my name on Facebook is "Jackie Larrick Stevens".....once we are friends, I just submit your name, and the next thing you know, you'll see that you're a part of the group (group lists are on the left side of your FB timeline)....

    Also, the Webwhisper's site is full of tips and tricks.....they were the only resource at the time my mom had her laryngectomy...they were wonderful. 

    http://www.webwhispers.org/

    If you are living in the Seattle area, there is a support group for laryngectomee's there: 

    Meeting Information:

    Highline Cancer Center-Franciscan Highline Hospital
    16233 Sylvester Rd SW
    Burien , WA 98166

    Meets 1st Tuesday every month from 11 AM until 1 PM

    Contact Information:

    Rebekah Bird
    Burien, WA 98166

    phone: 206-431-5249

    RBird@highlinemedical.org

    p

     

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    #8
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    hi Sharon.  i am also a

    hi Sharon.  i am also a lary.  i had my surgery 2/28/12 for recurrence of larynx cancer.  like you i still have rough days accepting this new life style.  i also suffer with depression which got much worse after this surgery.  i take medicine daily to help combat that.  are you able to talk?  once i was able to talk, about 1 yr or so after surgery, it was a little easier to accept.  feel free to pm if you want.  as the others said, web whispers is a great site and it is all larys and their caregivers.  i learned a lot from them that i should have been told but wasn't.  like P said, there is also a lary group on fb.  you can look me up if you want, Debbie Delaney Deaton.  i'm glad you have joined our family here but surely wish you didn't have the need.  this is a great group of people and all will do their best to answer any question you may have.

    God bless you,

    dj

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