Tracheotomy Tales

Anonymous7/6/2023
Anonymous7/6/2023 Member Posts: 176
in Head and Neck Cancer #1

I have updated my profile with my own 'tracheotomy tale' - I'll bet we all have a tale to tell about our trachies, be they temporary or more longstanding. 

When end you think of everything we have got ourselves through, we are a bunch of heroes when you think about it! Give ourselves a pat on the back :))

Comments

  • wmc
    wmc Member Posts: 1,804
    #2
    Tracheotomy Tales

    Yes having a trach is life changing. I am glad for the ones that it is not a perminent one, as mine and many others here. For me having the laryngectomy was life saving, as well as life changing, i'm glad to have been given a second chance on life. 

    Bill  10/2013

  • Anonymous7/6/2023
    Anonymous7/6/2023 Member Posts: 176
    #3
    wmc said:

    Tracheotomy Tales

    Yes having a trach is life changing. I am glad for the ones that it is not a perminent one, as mine and many others here. For me having the laryngectomy was life saving, as well as life changing, i'm glad to have been given a second chance on life. 

    Bill  10/2013

    I like that "second chance"

    I like that "second chance" feeling. 

    Do permanent trachies get less uncomfortable as time goes on?

  • wmc
    wmc Member Posts: 1,804
    #4
    Estelle_H said:

    I like that "second chance"

    I like that "second chance" feeling. 

    Do permanent trachies get less uncomfortable as time goes on?

    Do permanent trachies.....

    Permanent trach is a little differant then a temp one. We are total nech breather's and have no voice box. No air goes through your nose or mouth. The nose is just a orniment, or in my case, keeps my glasses on. We had to learn how to eat, swallow, and communinate all over again. Some have no vioce due to radation, others use an EL [electronic larynix] and have a bit of robot sound. Then there are the ones with a TEP, [prosthises] and they sound more normal just a little horse sounding.

    Mine is not unconfortable, you just have to get used to putting your hand over your throat in stead of your mounth when you cough. A sneese it differant and takes time to get used to. Never new how much your noise really did for you until it's gone.  Most everyone that have the laryngectomy had no choice. I had it or they would not do the surgery because of my lungs. You get used to the "New You" and that second chance.

    Bill

  • Anonymous7/6/2023
    Anonymous7/6/2023 Member Posts: 176
    #5
    wmc said:

    Do permanent trachies.....

    Permanent trach is a little differant then a temp one. We are total nech breather's and have no voice box. No air goes through your nose or mouth. The nose is just a orniment, or in my case, keeps my glasses on. We had to learn how to eat, swallow, and communinate all over again. Some have no vioce due to radation, others use an EL [electronic larynix] and have a bit of robot sound. Then there are the ones with a TEP, [prosthises] and they sound more normal just a little horse sounding.

    Mine is not unconfortable, you just have to get used to putting your hand over your throat in stead of your mounth when you cough. A sneese it differant and takes time to get used to. Never new how much your noise really did for you until it's gone.  Most everyone that have the laryngectomy had no choice. I had it or they would not do the surgery because of my lungs. You get used to the "New You" and that second chance.

    Bill

    How is your swallowing?

    How is your swallowing?

  • wmc
    wmc Member Posts: 1,804
    #6
    Estelle_H said:

    How is your swallowing?

    How is your swallowing?

    My Swallowing is good.

    I have very little  problems with swallowing. I have to drink liquids slow or I asperate because of my TEP leaks around the outside and then I cough extreamely hard, which makes me loose what is in my stomach. The doctors are working on the leaking but have not got it fixed as of yet. However with all that I can eat anything I want to, it just takes a little longer to eat then most people.

    I also have acid reflex, GURD. hitanal hernia, stage 3 emphysema, Alpha 1 antitrypsin dificency, chronic bronchitis, osteoposis, and bone spurs in my neck that pinch nerevs and also are hitting the back of my esophagus and effect my swallowing. I had all of this before the cancer, and now I am cancer free for 10 months and doing great.

    Thanks, Bill In California 10/2013

  • lornal
    lornal Member Posts: 428
    #7
    tracheotomy

    I had one before I had the total laryngectomy.  WORST 10 DAYS OF MY LIFE!  I managed to stay home 1.5 days before going to ER by ambulance - it clogged.  Then back that same night - and stayed until my next surgery.

    The permanent trachestoma - although I'd rather NOT have it - is so much better.  I need to wear a tube 24/7, else it starts to shrink.  That is my biggest issue.  No pain, mucus under control.   I also can eat.  I couldn't eat before, but they used part of the forearm flap to reconstruct part of my esophagus.  Now I can eat anything.

    Sorry that your healing took soo long.  My stoma took the longest because of prior radiation in 2007.  I ended going back in the hospital for cellulitus at the stoma site.  Fortunately is was NOT MRSA.

    Lorna

    2007 & 2014

     

  • Hondo
    Hondo Member Posts: 6,636 Member
    #8
    lornal said:

    tracheotomy

    I had one before I had the total laryngectomy.  WORST 10 DAYS OF MY LIFE!  I managed to stay home 1.5 days before going to ER by ambulance - it clogged.  Then back that same night - and stayed until my next surgery.

    The permanent trachestoma - although I'd rather NOT have it - is so much better.  I need to wear a tube 24/7, else it starts to shrink.  That is my biggest issue.  No pain, mucus under control.   I also can eat.  I couldn't eat before, but they used part of the forearm flap to reconstruct part of my esophagus.  Now I can eat anything.

    Sorry that your healing took soo long.  My stoma took the longest because of prior radiation in 2007.  I ended going back in the hospital for cellulitus at the stoma site.  Fortunately is was NOT MRSA.

    Lorna

    2007 & 2014

     

    G'day Bill \ Lorna

     

    Something I always wondered about getting a tracheotomy done, can you talk through. I can talk some but continue to have spasms then it take my voice away until the spasm is over then it leaves my tongue numb and makes talking really hard and harder to understand. I was wondering if a tracheotomy would help me to speak better and longer.

    Tim Hondo     

  • wmc
    wmc Member Posts: 1,804
    #9
    Hondo said:

    G'day Bill \ Lorna

     

    Something I always wondered about getting a tracheotomy done, can you talk through. I can talk some but continue to have spasms then it take my voice away until the spasm is over then it leaves my tongue numb and makes talking really hard and harder to understand. I was wondering if a tracheotomy would help me to speak better and longer.

    Tim Hondo     

    Sorry Tim....No

    Sorry it would not help you at all. You still need your toung and mouth to talk. I just don't have vocal cords. I use the mucus folds in my neck to vibrate so I can talk. Even with an electric larynx you need your toung and mouth to form the words. The only advantage I have is if food gets stuck in my throat, I can still breathe. Now if you use an EL to talk and have an accent, say a southern or upper east coast, you still will have the accent. It all comes from how you shap your mouth and toung to talk.

    Bill

  • patricke
    patricke Member Posts: 570 Member
    #10
    wmc said:

    My Swallowing is good.

    I have very little  problems with swallowing. I have to drink liquids slow or I asperate because of my TEP leaks around the outside and then I cough extreamely hard, which makes me loose what is in my stomach. The doctors are working on the leaking but have not got it fixed as of yet. However with all that I can eat anything I want to, it just takes a little longer to eat then most people.

    I also have acid reflex, GURD. hitanal hernia, stage 3 emphysema, Alpha 1 antitrypsin dificency, chronic bronchitis, osteoposis, and bone spurs in my neck that pinch nerevs and also are hitting the back of my esophagus and effect my swallowing. I had all of this before the cancer, and now I am cancer free for 10 months and doing great.

    Thanks, Bill In California 10/2013

    LEAKY TEP

    Hey Bill,

    Back in the day when I had a TEP that leaked all the time, my SLP tried an extra-ordinary TEP that had what was the equivalent of washers on both sides of the prosthesis.  That prosthesis worked pretty well for a short time, until my fistula just kept getting bigger and bigger, until TEPs were no longer an option, and the fistula had to be patched.  I'm an EL kinda guy now.  You might want to talk with your SLP about whether or not a prosthesis like I described might help in your situation.  You might also want to put a call out on Webwhispers to find out if there are other larys with suggestions about possible solutions for your leaky prosthesis.  

    PATRICK    

  • patricke
    patricke Member Posts: 570 Member
    #11
    Estelle_H said:

    I like that "second chance"

    I like that "second chance" feeling. 

    Do permanent trachies get less uncomfortable as time goes on?

    TRACH COMFORT

    Hey Estelle,

    In time, i.e., many months, the diameter of your stoma should stablize and you will not need to wear a trach tube anymore.  In the meantime I found/find that the tube was/is unnoticeable most of the time.  I still wear a lary tube at times, because although my stoma is stable, the skin around my stoma becomes redened after a few days of wearing the adhesive tracheostoma attachment housings that hold the HME cartridges.  So, hopefully you will soon become acustomed to your trach tube and won't notice it much.   

    PATRICK

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