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Suez39
Suez39 Member Posts: 162 Member
in Head and Neck Cancer #1

Hi everyone,

Haven't been on here in awhile. Had near death experience last May. Had mucus plug come up my throat and I couldn't breathe. Rushed to ER and they put permanent trach. I also have permanent FT. I had BOT and left tonsil cancer. Went through rads and chemo treatment. Radiation damaged my throat. Have alot of scar tissue build up and my epiglottis is fused to the throat wall. Doctors are saying I need a larengectomy, which I'm too petrified to go through. When the surgeon put in my trach, he knicked a vein. So I had to go in again for them to stop the bleeding. Doctor apologized, but I was upset. Thought should have been more careful doing the procedure. So, I don't have much faith in my doctors. Messed up putting in trach, they might make another one. Unfortunately the hospital I go to is supposed to be the best. Did get 2nd opinion from another doctor. Scoped me and took pics of my throat. Came to same conclusion as my ENT. Wanted to know if thier is anyone out there living with permanent trach and FT, or had a larengectomy? For larengectomy, just have quite a few questions to provide me with clarity. I try very hard to stay busy and pisitive, but my situation having tubes keeping me alive depresses me. But don't show it that much around my mom or boyfriend. Don't want to bring them down. So, any suggestions or advice would be greatly appreciated.

Hugs to all,

Susan

Comments

  • wbcgaruss
    wbcgaruss Member Posts: 2,275 Member
    edited December 2020 #2
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    Susan Glad To Hear From You

    But certainly sorry to hear the things you are going through. You certainly have your challenges and have had your share of the things we H & N folks sometimes have to go through. There is only one fella I remember who had a laryngectomy and permanent trach which is the route he chose for treatment. His name was Bill and his CSN name is wmc. He always had a fantastic and upbeat attitude. I have not seen him in any recent postings but you may be able to contact him through CSN private messaging. I know he would be glad to help. Here is a link to his My CSN Space page   https://csn.cancer.org/user/218705.  I remember he even had a video showing he could whistle and do other things that physicians said someone with a trach could never do but I can't find them right now. Wait I found it, go to this link of CSN posting https://csn.cancer.org/node/306376  and scroll to the bottom of the page and Bill is the last one telling about blowing up the balloon and offering a link to it and talking about web whispers group and offering a link to it and also a Facebook connection. Also, there are two folks in the forum that are on permanent feeding tubes, and if you private message them I am sure they would give you some support and help. One of them is Logan 51 here is his CSN page https://csn.cancer.org/user/297968 and the other fella is Mikemetz https://csn.cancer.org/user/159460 so you can do some reading and reach out to these folks and I hope this helps you. Wishing you the best Susan-Take Care-God Bless-Russ

  • Suez39
    Suez39 Member Posts: 162 Member
    edited December 2020 #3
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    wbcgaruss said:

    Susan Glad To Hear From You

    But certainly sorry to hear the things you are going through. You certainly have your challenges and have had your share of the things we H & N folks sometimes have to go through. There is only one fella I remember who had a laryngectomy and permanent trach which is the route he chose for treatment. His name was Bill and his CSN name is wmc. He always had a fantastic and upbeat attitude. I have not seen him in any recent postings but you may be able to contact him through CSN private messaging. I know he would be glad to help. Here is a link to his My CSN Space page   https://csn.cancer.org/user/218705.  I remember he even had a video showing he could whistle and do other things that physicians said someone with a trach could never do but I can't find them right now. Wait I found it, go to this link of CSN posting https://csn.cancer.org/node/306376  and scroll to the bottom of the page and Bill is the last one telling about blowing up the balloon and offering a link to it and talking about web whispers group and offering a link to it and also a Facebook connection. Also, there are two folks in the forum that are on permanent feeding tubes, and if you private message them I am sure they would give you some support and help. One of them is Logan 51 here is his CSN page https://csn.cancer.org/user/297968 and the other fella is Mikemetz https://csn.cancer.org/user/159460 so you can do some reading and reach out to these folks and I hope this helps you. Wishing you the best Susan-Take Care-God Bless-Russ

    Thank you!

    Russ, appreciate all your help. Unfortunately, if I stay the way I am now, I won't be able to speak. One of my vocal cords is paralyzed and the other very weak. But on the other hand, haven't larengectomy terrifies me. I like many others on this forum have been through alot. Having permanent trach and FT a double whammy. Depresses me, but still keep plugging away, and try hard to stay in good spirits. I want to tell you, you are a true inspiration to me and others on this forum. Always reaching out to help whenever you can. You have helped one of my friends on here, forum name Driving Daisy. She got a raw deal when being over radiated for small patch on her tongue and tonsil. She has many health issues resulting from chemo and rad treatments. Long story short ( which I never do - lol) you have helped her try to cope with her issues. Again, thank you for your suggestions. Will try to look them up. Hugs to you and God bless...

    Susan the pizanno!

  • Logan51
    Logan51 Member Posts: 464 Member
    #4
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    Suez

    Half my larynx has been paralyzed since I was 13, thanks to a car accident that also crushed my windpipe. Had a trachea for 26 months while going thru a lot of Ops., with a silicone stint grafted in below my larynx as part of the final solution. My voice has not changed over so many years. Went to a new ENT of recent, and he was concerned about the opening between the paralyzed and other half that moves. Shocked me to see the video- I was never told the paralyzed half got that way in a position blocking almost half my windpipe. He said he sees very little movement when he had me say "Eeeee,"  but I have not noticed a difference. Still, I can't help but think the Rads might have created scar tissue around the functioning half of my larynx.

    I am now FT-dependent since 8/6/2019, and you have my deepest condolences for the epiglottis problem. When my esophagus opening became a problem with the growth of scar tissue around it, then seeing the ENT's video, concerns about scar tissue involving it entered my mind. I cannot swallow, so I'm also dealing with the issue of the changed saliva going down the wrong hole and into my lungs. Cough-up a lot when I wake-up each morning.

    As for Bill, his whistling is not that big a deal- he still has air passing thru his windpipe to the mouth when he puts his finger over his trachea tube hole. There were times way back when that I was able to do that between Ops.

    Hopes for the best for you, Suez, and if both ENTs agreed- then do it. I would. 

  • PipLily
    PipLily Member Posts: 127 Member
    edited December 2020 #5
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    Suez ......

    I don’t have anything of value to add as far as experience, but I do want you to know I’m thinking of you, and am sorry you have to go through any of this. Strength and blessings to you. And lots of hugs. I hate cancer........

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