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Idiopathic Subglottal Stenosis

Ear, Nose & Throat (ENT) | Last Active: Oct 17, 2023 | Replies (28)

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@jpuntasecca

Hi @monarowan, I received a tracheostomy a year ago due to surgery for thyroid cancer that had spread and infiltrated my trachea. I could have had it removed after I recovered from surgery but was told to leave it in while I received radiation to my neck. I’m glad I did because the treatment caused a lot of swelling which affected my breathing. It has been about 10 months since I completed my radiation and I’ve been left with only one working vocal cord and a lot of scar tissue in my airway so the trach can’t be removed without some surgical intervention. Although I’m grateful that I had the trach while undergoing treatment, it’s overstayed its welcome! It requires quite a bit of care and interferes in daily life. It also makes speaking difficult. My surgeon performed a bronchoscopy a couple of days ago and cut out some scar tissue near my vocal cords to free them up. Now that he’s seen what he’s dealing with in there he’s going to go back in and resect part of the larynx and graft a piece of my cheek to repair it. Apparently if he just cut out the scar tissue it more than likely would grow back. Resection is a more permanent solution. I hate the thought of another surgery but Id do anything to be trach-free. I want to be able to go swimming with my granddaughter! My advice is try a second opinion. I’m very lucky to live in North Jersey just outside of New York City so I have quick access to cutting edge healthcare. I don’t know where you live, but if you look elsewhere you may find you have more options. Then you can make an educated decision. I wish you the best!

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Replies to "Hi @monarowan, I received a tracheostomy a year ago due to surgery for thyroid cancer that..."

Hi
Thank you for getting back to me. I’m in Boston, but there is no way on earth I’m having a tracheostomy after seeing videos the way people live with it. I contacted the Mayo Clinic and other opinions to avoid this mess. It’s ruining my life and that’s all I think about.
Good luck and thank you,
Mona