Idiopathic Subglottal Stenosis

Posted by brookssh @brookssh, Sep 2, 2016

I have had a subglottal stenosis for over twenty years, been diagnosed for six years, with a partially paralyzed vocal cord causing shortness of breath and a very weak, raspy voice.. Every six months I go to MUSC, Charleston to get my trachea dilated and CO2 laser for scar tissue on the stenosis, along with injections of collagen and juvederm into the vocal cords. All in all, this treatment works very well, I can breath and talk. However, I am frustrated by the lack any long term success and would like to know if anyone knows of any cutting edge research, doctor, or hospital that seems to be making better progress.

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Ali Skahan | @aliskahan | Sep 2, 2016

Hi @brookssh, welcome to Connect! I'm glad you asked about this because it is a rare condition that should be discussed. Here is some information I was able to find, which includes additional resources and a section on investigational therapies: http://rarediseases.org/rare-diseases/idiopathic-subglottic-stenosis/

I'm also tagging @hopeful33250, who's a mentor here on Connect who may be able to help as well. Have you asked your physician if they know of any research being done on this?

elltd | @elltd | Sep 2, 2016

My perception there is no money in the cure, there's more money to be made by the continued treatment. I wish you well and will pray one day there will be a long time cure

brookssh | @brookssh | Sep 3, 2016

In reply to @aliskahan "Hi @brookssh, welcome to Connect! I'm glad you asked about this because it is a rare..." + (show)

thank you so much, will read the info you relayed. I would really like to go to Mayo Jacksonville, but need to know if there is a real pro there who can effect better results, maybe a different procedure. also do not know who to see there. Did see Rheumatology for consult on
disease, but they did not do any referral to ENT for scope or ideas on next steps.

brookssh | @brookssh | Sep 3, 2016

Thank you for the good wishes, I hope I can locate a doctor who can lend some enlightened thoughts one day.

Colleen Young, Connect Director | @colleenyoung | Sep 3, 2016

In reply to @brookssh "Thank you for the good wishes, I hope I can locate a doctor who can lend..." + (show)

Brook, You'll find the contact numbers for Mayo Clinic in Jacksonville on this web page http://mayocl.in/1mtmR63 They will review your medical history and can recommend at physician specialist.

deborahe | @deborahe | Feb 25, 2017

Hi Brook, I recently came across some great info and support groups for ISS. I do not have this condition myself, but was searching for info on tracheal resection. There are Facebook support groups (Idiopathic Subglottic Stenosis and Living with Idiopathic Subglottic Stenosis) and a blog (search "fix my subglottic stenosis-breathe in breathe out") Hope that helps!

brookssh | @brookssh | Feb 25, 2017

In reply to @deborahe "Hi Brook, I recently came across some great info and support groups for ISS. I do..." + (show)

thank you so much for your kind reply and the information. I am so happy to receive it and will begin reading immediately. Sincerely, Susan Brooks Sent from Windows Mail

deborahe | @deborahe | Feb 25, 2017

I think you will find excellent info in the blog-particularly with regard to doctors. Direct link to blog is: bsunby.wordpress.com

Teresa, Volunteer Mentor | @hopeful33250 | Feb 25, 2017

Hello @brookssh and @deborahe My left vocal cord is completely paralyzed. I also had a very raspy voice and I would tire easily when I talked. I found myself talking less and less as the situation went on. I consulted doctors and they said that my option for relief was to have an implant put in the paralyzed cord. I went to Cleveland Clinic and had that procedure done and it helped immensely. Now the two vocal cords close better and I have less difficulty with swallowing, choking and talking. It was a good decision for me. Has anyone ever suggested surgery such as this for your situation? Teresa

deborahe | @deborahe | Feb 25, 2017

Hi Teresa, Thank you for your comments. I also have a frozen vocal cord and raspy voice, but it is related to the tumor in my larynx. I have seen a voice specialist in addition to my ENT surgeon, so maybe that is a possibility in combination with my surgery. I have heard good things about the Cleveland Clinic and happy that you found a solution. It is frustrating to have a compromised voice. Thanks again!