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May 21, 2017 · ISS - Mayo Protocol works in Ear, Nose & Throat (ENT)

I wanted to relay that I was diagnosed about seven years ago with ISS and vocal cord dysfunction by Dr’s White and O’Rourke at MUSC, Charleston, SC..
After doing dilations twice a year, I am very happy to say that my doctor thinks the Mayo protocol I am following using flonase, flovent, nexium seems to be working. I am now at almost twelve months since my last dilation and can still breath well. We believe it was the addition of the flovent that did the trick.
I am going in this week to receive a fat (from stomach) injection into my frozen vocal cord to help me talk and also to measure how dilated I am. Also investigating CBD oil for inflammation. Has anyone had luck with the fat injections or the oil? Thanks and good luck to all.

Feb 26, 2017 · Idiopathic Subglottal Stenosis - is there a current discussion group? in Ear, Nose & Throat (ENT)

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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Feb 25, 2017 · Idiopathic Subglottal Stenosis - is there a current discussion group? in Ear, Nose & Throat (ENT)

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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Feb 5, 2017 · Post intubation tracheal stenosis complications in Lung Health

Thank you so much for your reply. My ENT surgeon is Ashley O’Rourke at MUSC in Charleston, SC. For seven years we have been doing dilation, CO2 laser and steroid injections, hoping that the stenosis would “give up” and that it would not get so inflamed causing me to have bi-annual dilations.
I have been following the protocol of Nexium, Flonase and just recently Flovent. Good news is that for the first time, I have now made it to nine months without need for dilation. We believe that the combination of all treatments above may now be having a positive effect. I have avoided resection due to the “big” nature of the surgery and recuperative period, along with the fact that I could re-stenos. Looking to see if anyone out there has had other positive treatments. I have been to Mayo before to discuss Wegener’s and polycondritis, which I am negative for, but may still seek out second opinions about stenosis, inflammation and vocal cord dysfunction. does anyone know who the guru at Mayo is for ISS?

Sep 3, 2016 · Idiopathic Subglottal Stenosis - is there a current discussion group? in Ear, Nose & Throat (ENT)

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

Sep 3, 2016 · Idiopathic Subglottal Stenosis - is there a current discussion group? in Ear, Nose & Throat (ENT)

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.

Sep 2, 2016 · Idiopathic Subglottal Stenosis - is there a current discussion group? in Ear, Nose & Throat (ENT)

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.