Hi Jeff, I sent you a message through the portal here. : )
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Hi, Sorry to hear of your condition. If you are not putting yourself at risk by delaying surgery to do so, a second opinion can give you another perspective that may reinforce your current course of action or offer other options, and I think it's especially important with rare cancers. It's worth a phone call to Mayo. All the best to you on this journey.
Congratulations, Jeff! That is indeed wonderful news! All is well with me; I return to Mayo in November for scans. In April I elected to have a scar revision to the trach site, and am very pleased with the results. I don't know if you are on Facebook, but I follow a page called "The Voice Forum" (run by a Speech-Lang Pathologist with a specialty in voice disorders). Your story was shared on that page on April 20! Enjoy your summer and keep in touch! -Deb
Hi Jeff, Thanks for letting me know. It has truly been a remarkable journey. I I plan to share it with my family and friends, and wish you and your family all the best. I'm so happy for your health and your great attitude. Life is sweet! PS: It's nice to have a face to put with the name!
Hi Jeff! Sounds like you are doing great! I found the speech therapy sessions to be helpful; the goal being to smooth the roughness of my voice. Good training and tips on how to breathe more deeply and relax the neck muscles and not try to force the voice so much. Your running may be achieving the same things!
Keep in touch and continued good health to you!
Hi Jeff! I was just thinking about you! My appointment went very well- scan looks good and my surgeon is extremely happy with results. As a small piece of my cricoid cartilage remains, I will still be monitored, but I don’t go back for a year. He discussed doing some revision to tissue to open my airway a bit more and possibly an injection to damaged vocal cord to “pump it up” and potentially improve voice quality. Have you had any additional procedures? Today is my speech eval-I’ll let you how that goes. I agree, much to be thankful for! Deb
Thanks for checking in and congratulations on your upcoming anniversary and strong recovery! How goes your running? I am doing well. In two weeks I have my first scan since surgery 6 months ago and I’m hopeful that it is clear and all is well. My voice quality is not much changed, so I’m going to see a speech/lang therapist next month for an evaluation and see what options there might be to improve that. Take care and continued good health to you! Deb
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.