Tracheotomy after Larynx cancer

Posted by stephanie101 @stephanie101, Aug 18 1:31pm

I need help and bigger advise. My husband went through Radiation for his Larynx Cancer and developed Necrosis on his (pre cancer) left side neck area. He has been in a Trach since 06/06/22 the Necrosis has healed. The ENT claims his airway is not open enough to remove the Trach. and only by a millimeters he says! This is now affecting my husbands well being……I want a second opinion and how many mm. does he need for his airway. BTW he has stage 1 COPD but was breathing fine before this all happened. Please help with your knowledge or advise.

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Hello Stephanie,
Was the necrotic tissue removed, or did it heal and leave scar tissue?
Were the vocal cords affected in any way?
I have had a Tracheotomy for over one year now due to my vocals cords to become bilaterally paralyzed. This was caused by radiation treatments for throat cancer, although having Covid (during the treatments) might have been a contributing factor.
The trach-tube is placed past the vocal cord area to enable me to breathe!
It sounds like there is damage to the airway above the vocal cord area. the exact mms needed to breathe is unknown to me. Has he gotten a needed second and even third opinion? Hoping your issue is resolved soon!

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@thomason

Hello Stephanie,
Was the necrotic tissue removed, or did it heal and leave scar tissue?
Were the vocal cords affected in any way?
I have had a Tracheotomy for over one year now due to my vocals cords to become bilaterally paralyzed. This was caused by radiation treatments for throat cancer, although having Covid (during the treatments) might have been a contributing factor.
The trach-tube is placed past the vocal cord area to enable me to breathe!
It sounds like there is damage to the airway above the vocal cord area. the exact mms needed to breathe is unknown to me. Has he gotten a needed second and even third opinion? Hoping your issue is resolved soon!

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his Necrosis has healed and he can talk when he covers his Trach hole. So his vocals are good and have been. He will be doing more therapy on his Edema in his neck which we were dealing with before all of this. The Trach happened because of the necrosis and he could not breathe is why it was an emergency placement. And I am searching for a second opinion and hopefully through this Mayo Clinic. To even try to remove it, see how he does on his own.

REPLY
@thomason

Hello Stephanie,
Was the necrotic tissue removed, or did it heal and leave scar tissue?
Were the vocal cords affected in any way?
I have had a Tracheotomy for over one year now due to my vocals cords to become bilaterally paralyzed. This was caused by radiation treatments for throat cancer, although having Covid (during the treatments) might have been a contributing factor.
The trach-tube is placed past the vocal cord area to enable me to breathe!
It sounds like there is damage to the airway above the vocal cord area. the exact mms needed to breathe is unknown to me. Has he gotten a needed second and even third opinion? Hoping your issue is resolved soon!

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And I am sorry you are going through this too. So is yours permanent? His oncologist pointed out he had some scar tissue before all this took place & taking Meds for that.
That is horrible that you had Covid through your treatments? Un heard of, again so sorry.

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@stephanie101

And I am sorry you are going through this too. So is yours permanent? His oncologist pointed out he had some scar tissue before all this took place & taking Meds for that.
That is horrible that you had Covid through your treatments? Un heard of, again so sorry.

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We all go through stuff. Thank-you for your kind words. Yes, unless the vocal cords (VC's) decide to start moving, they are frozen in place. It is very weird to understand- I do not understand it–that even with the VC's paralyzed, I can talk (when covering trach opening) and thank God can eat/drink. The ENT showed me that if you hold your fingers open like a peace-sign, that is how the VC's look when open. Mine are almost closed, so if you close those two fingers almost totally together, that is how my VC's look. Not only was breathing difficult before the tracheotomy, but mucus from the radiation treatment was also trapped behind the VC's. For almost an entire year I was on antibiotics, hospitalized several times on dangerous steroids/intravenous antibiotics, and up all night long trying to nebulize the mucus out. The mucus being trapped was causing lung infections and general misery. The tracheotomy has been a real lifesaver. Now, the mucus is suctioned right out, and I take the tube out several times per day to clean it out. I am no doctor, but it sounds like maybe his situation will be temporary. I am wishing you both the best. Take care!

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Thank you- and I feel every bit of your pain and yes thank god for the eating and being able to drink. I just need to find my husband a Doctor that is willing to take the chance in removing this trachea to see where he is at.
it's a journey and I wish you the best also.

REPLY

Stephanie, why doesn't he just take it out and see if he can breathe? I know that removing the tube at first is scary, but believe me, it is like blinking your eye after you do it a few times. Just make sure you wash it off with hydrogen peroxide, then rinse with sterile water and pat dry. Use the Obturator so it glides in without damaging throat tissue. It really is very easy. The opening would take days to close back up, so no need to feel like the hole is going to immediately close up! I take mine out about four times a day to clean out the gunk. It's up to you of course!!! Take care.

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@stephanie101

Thank you- and I feel every bit of your pain and yes thank god for the eating and being able to drink. I just need to find my husband a Doctor that is willing to take the chance in removing this trachea to see where he is at.
it's a journey and I wish you the best also.

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Stephanie, I left out the most important task! Cover the opening with a sterile cloth, then try to breathe. Of course, with the trach-tube out he will still be able to breathe because of the opening itself. The opening needs to be covered to test whether he can breathe normally! Sorry about that. Best wishes on your journey.

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@thomason

Stephanie, I left out the most important task! Cover the opening with a sterile cloth, then try to breathe. Of course, with the trach-tube out he will still be able to breathe because of the opening itself. The opening needs to be covered to test whether he can breathe normally! Sorry about that. Best wishes on your journey.

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Your feed back is very comforting. It has been annoying to talk to his ENT of anything being of an infection, He always comes back with, but everything looks good! we are not convinced that maybe his Necrosis is trying to come back especially these past 3 days/nights! constant coughing and gurgling of his Mucus through the nights!!

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@stephanie101

Your feed back is very comforting. It has been annoying to talk to his ENT of anything being of an infection, He always comes back with, but everything looks good! we are not convinced that maybe his Necrosis is trying to come back especially these past 3 days/nights! constant coughing and gurgling of his Mucus through the nights!!

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Stephanie, I have many friends online that have had radiation to the mouth/throat area. Mucus is the biggy, and unfortunately it seems to be a permanent fixture for most folks. Does he have a suction machine to suction out the mucus? If the mucus isn't removed, it can turn into a lung infection. Because of trapped mucus, I was on antibiotics for over one year before getting the tracheotomy. I hope things bet better for you!

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We do keep the suction going. He can't stand the sound and feeling of the gurgle so he has been cleaning it out himself when I'm not available and to give me a break of it. All we can do is push for the reversal. I have been reading up a lot on this stuff and we are trying to do everything right.

thank you : )

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@stephanie101

his Necrosis has healed and he can talk when he covers his Trach hole. So his vocals are good and have been. He will be doing more therapy on his Edema in his neck which we were dealing with before all of this. The Trach happened because of the necrosis and he could not breathe is why it was an emergency placement. And I am searching for a second opinion and hopefully through this Mayo Clinic. To even try to remove it, see how he does on his own.

Jump to this post

Hi Stephanie, I noticed that you're interested in seeking a second opinion at Mayo Clinic. I'm not sure if you've already done that already or not. If not, here's more information on how:
http://mayocl.in/1mtmR63
He can self refer or get his doctor to submit a physician referral. Let me know if you have any questions.

How are you doing today?

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@colleenyoung

Hi Stephanie, I noticed that you're interested in seeking a second opinion at Mayo Clinic. I'm not sure if you've already done that already or not. If not, here's more information on how:
http://mayocl.in/1mtmR63
He can self refer or get his doctor to submit a physician referral. Let me know if you have any questions.

How are you doing today?

Jump to this post

We are still trying to get there. He ended up in ER Wed. they did tests. found nothing. He is having issues breathing because of his Edema in his neck and now hurts to swallow and he feels like he is aspirating. ENT doesn't think so ER weighed it out with X-rays. Guess we just keep trying to move forward. I do have a second opinion ENT set up for next week. I did contact Mayo Clinic but it is too far for us to travel right now.

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