Idiopathic Subglottal Stenosis

There is a site on Facebook - Living with Idiopathic Subglottic Stenosis. They are a great resource for doctors and information on ISS.

You might also want to check out the blog "Fix My Subglottic Stenosis" by Brenda Sunby. (https://bsunby.wordpress.com) I don't have ISS, but had a similar surgery to Brenda's to remove a tumor in my larynx at the Mayo. I found her blog extremely helpful in understanding surgery, recovery and what to expect. It also helped me to put together a list of questions for my surgeon. She had her surgery at Cleveland Clinic. Best of luck to you. It can certainly be overwhelming, but good information helps.

I have damaged brocards and one is paralyzed as a result of reintubation after facelift surgery. It happened in May 2022, the chocking and coughing have improved but the breathing is difficult especially going on stairs or doing housework. My two doctors in Boston recommended a tracheostomy and I say I would rather die than have that. I’ll be willing to go anywhere in the country to fox this without a tracheostomy. Please help . I’m a college professor and I had to quit my job and retire early something I have done for 22 years and enjoyed. I made a living by lecturing and now I get tired from talking and activities and I need to find a solution for breathing. Also, has anyone tried synergy equipment run by the tennants father and son in Texas. Apply energy to your throat and it will cure it. Tony Robbins used them and he got cured. Advice please

Meant to say vocal cords

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!

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

Mona, I’m so glad you’re seeking other opinions. It is a huge decision as it is life changing. My surgeon is Eric Genden at Mt Sinai in NY in case you’d like to research him. He performed the first trachea transplant. You can google his name along with tracheal transplant and a New York Times article should pop up. Good luck to you! - Janice

Hi
Anyone has had an arytenoidectomy which is widening of the vocal cords to improve breathing with laser. I’m desperate to hear from someone that had it to tell me if it helped. I’m told it’s irreversible and it could diminish my voice quality. Please help
Mona