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brookssh
@brookssh

Posts: 7
Joined: Aug 30, 2016

Idiopathic Subglottal Stenosis - is there a current discussion group?

Posted by @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.

REPLY

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?

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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 

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@aliskahan

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?

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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.

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

@brookssh

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

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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.

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!

@deborahe

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!

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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

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

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

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!

@deborahe it sounds as if your situation is different than mine. i certainly wish you well as you seek help with your tumor and vocal cord problem It does make for a more difficult life when you can’t talk comfortably. Best wishes, Teresa

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@hopeful33250

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

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So wonderful to hear from you, thanks for getting in touch.  No one has mentioned this to me, but I have a very similar situation to you.  My left vocal cord does not always work, and certainly not properly, so I too have a very
raspy voice and I do get very tired talking.  I have gotten collagen injected and it also helped immensely, but only for about six months.

I have thought about contacting a doctor at Cleveland.  Could you relay who did your surgery and anyone else you consulted there?

I also have a subglottic stenosis so I get balloon dilations and CO2 laser on scar tissue to keep my trachea open for clear breathing.

Best wishes to you and thanks for your help.  Susan

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@hopeful33250

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

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Hi @brookssh, Your situation sounds a bit different from mine in that I do not have the subglottic stenosis. That sounds difficult with the balloon dilations, etc. The doctor I saw at Cleveland Clinic is Dr. Paul Bryson. Here is the website with his info: http://my.clevelandclinic.org/staff/14474-paul-c-bryson. Cleveland Clinic was a 3 1/2 hour drive from home, but I felt it worth the drive. Best wishes to you. Keep in touch with Mayo Connect, we would like to know how you are doing. Teresa

Hi @brookssh, my husband suffers from idiopathic subglottic stenosis. Long story short, in May 2016, Dr. Hillel at Johns Hopkins performed a new(er) procedure on him after the initial traditional treatments failed. It’s a tracheal resection and he used a skin graft from my husband’s thigh to replace the removed area. Hubby is a new man! He has gone back a couple of times since to have scar tissue lasered out (I call it getting roto-rootered), but other than that, his breathing is fantastic! He still struggles with the cough and phlegm, but nothing even CLOSE to how bad he used to be. If you have the opportunity, check out Dr. Hillel – he is phenomenal!

Hello Amy! Welcome to Mayo Clinic Connect.

Thank you for posting, I’m glad that your husband has had a successful surgical outcome.

Will he continue to have to go in for scar tissue removal? How often has he had to do this?

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