Tracheotomy - ins and outs

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newbie

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Sep 12, 2008
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Reason
CALS
Diagnosis
06/2008
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US
State
wa
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Lynnwood
My husband is facing choices with negative trade offs. Anyone had hands on experience with managing trachs at home? Because of choking all the time, even on his own saliva, and also having laryngeal spasms, Dr.s recommend a trach or laryngotracheal separation. Any experience with either one?
 
surgical procedure laryngotracheal separation

Thanks, Joelc,

I read the thread you listed, and some others. I didn't run across anyone referring to the specific procedrue they want to do on my husband. I think he wants it also because choking when material seeps past the epiglottis into his airway, and then suffering spasms of his vocal cords so he can't cough anything out nor get a breath in is very freightening - he feels panicked several times/day. He still has good use of his limbs and is able to breath unassisted (except during choking events), using a cough-assist machine whenever he is having a choking/strangling episode.

They say he won't have a tube in the trachea or the stoma. It will just be a hole. I'm trying to figure out what equipment and how limiting it will be. Will he be able to go without suction (has never had it yet, except as provided by the cough-assist machine)? What will the mist equipment look like and how big will it be, will he need it all the time? Will we really be able to go places and do things like they think because his body is still strong (still walks, has good use of hands and arms).

What can they do about the drooling? How will he be able to handle mucous in the nose, for instance after crying, when he will no longer have air going through his nose and mouth (because of the laryngotrachael separation proceodure)?

There are so many questions! My husband was just diagnosed in June, had a PEG tube place in August and now this recommendation to have his trachea separated from his throat and routed out through a stoma in his neck to solve the problem of choking, pneumonia and vocal cord spasms. It feels like a run-away-train.

Any answers or suggestions?:-?
 
WOW! I am not a doctor but I seriously question what is being recommended. I would definitely get a second opinion before doing anything. The doctor may be correct in what has been recommended and should be able to answer your questions, if not I would find a different doctor. Sorry I cannot be more help, maybe someone else can add some words of wisdom.
 
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