Idiopathic Subglottal Stenosis - is there a current discussion group?

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.

Hi, Anyone out there have this disease?

@debbredin

Hi, Anyone out there have this disease?

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Hello @debbredin! Welcome to Mayo Clinic Connect! Thank you for posting to the group. You will find a wealth of information in talking with the community members and connecting with people who may be experiencing the very same situation as yourself. You will notice that I moved your topic to a discussion already taking place on Idiopathic Subglottic Stenosis.

I would like to introduce you to fellow members here discussing Idiopathic Subglottic Stenosis. Please meet @brookssh, @deborahe, @miller0614 and @hopeful33250. I hope they will all welcome you and answer any questions you may have regarding the topic.

@debbredin, were you recently diagnosed? Are there specific questions you have for the community?

Hello @debbredin

Let me add my welcome to you. I’m glad that you have reached out to Mayo Connect. We have many supportive, encouraging members in our community who are glad to share their experiences with others.

Three years ago, I had surgery for a paralyzed vocal cord. I was never give the diagnosis of Subglottic Stenosis, however, the reason for the paralyzed vocal cord remains somewhat of a mystery (possibly related to a Parkinson’s disorder). Nonetheless, the surgery I had was to implant a silastic implant into the paralyzed vocal cord and it helped my speech as well as swallowing problems. My surgery was done at Cleveland Clinic (about 3 hours from where I live), they have a good ENT program there and do many of these surgeries.

As Jamie said, I too would be interested in knowing more about your diagnosis as well as your symptoms. Have any recommendations been made regarding treatment?

Teresa

Hi Jamie & Teresa, Thank you for reaching out. My reason for hooking up with Mayo is my sister-in-law in Arizona keeps asking me to come get checked out there so I was looking on-line to see if anyone there performed this surgery and that’s when I found your site 🙂

I was diagnosed in 2011 with ISS and will have my 7th dilatation this coming Tuesday. The stenosis is very close to my vocal box and this time around I have basically lost my voice along with not being able to breathe.

Do you have others on this site with ISS? I have heard of Dr. Lorenz (sp?) in Cleveland from a site I follow on Facebook. I see Dr. Merati at the Univ of WA.

@debbredin If you sister is in AZ you might consider the Mayo facility there. I’m not familiar with Dr. Lorenz at Cleveland. As I live in Michigan, Cleveland Clinic was relatively close to me. It sounds like you have dealing with this problem for a while. I hope you are able to get some treatment that will hold up and help your talking and breathing problems. Is speech therapy recommended for this disorder?

Teresa

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.

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