Hi Deb and @jeffk , just letting you know that my vocal chord surgery went quite well. The surgeon used one of my muscles to attach the Gore-Tex wedge, as the trachea was too friable. He's expecting the muscle to atrophy such that the chord will be in the right position in a couple months. I feel so fortunate, as COVID policies were changing rapidly during the two days I was in the hospital. I was still able to have my follow-up bronchoscope last week, which showed that the airway looks great. I was allowed to start practicing with my voice a couple days ago. It's small and raspy, and it takes a few tries to get started, like a stubborn lawn mower. But I do think it will sound like the old me. The cats and my husband are thrilled to hear it. I think singing will be possible too. Hoping all is well with you and your loved ones. Take care!
Hi Deb and @jeffk , just letting you know that my vocal chord surgery went quite well. The surgeon used one of my muscles to attach the Gore-Tex wedge, as the trachea was too friable. He's expecting the muscle to atrophy such that the chord will be in the right position in a couple months. I feel so fortunate, as COVID policies were changing rapidly during the two days I was in the hospital. I was still able to have my follow-up bronchoscope last week, which showed that the airway looks great. I was allowed to start practicing with my voice a couple days ago. It's small and raspy, and it takes a few tries to get started, like a stubborn lawn mower. But I do think it will sound like the old me. The cats and my husband are thrilled to hear it. I think singing will be possible too. Hoping all is well with you and your loved ones. Take care!
Julie, What fantastic news! I’m so glad you were able to have your procedure done and have such an excellent outcome. All the best to you as you continue to heal and find your voice again. Keep us posted on your progress! -Deb
Julie, thank for sharing such a bright spot amongst all the concern. So delighted that you were able to have the procedure and more importantly that it was successful. Hope that your voice continues it's path back to a new normal. I believe that it sound's like you will be joining Deb and I on the other side of all of this. I assure that at the end of the very painful journey is an unbelievable feeling of gratitude and appreciation for each and every day that we have with full functionality and life! Be safe and as Deb said, keep us informed we are cheering and praying for you! Jeff
Julie, What fantastic news! I’m so glad you were able to have your procedure done and have such an excellent outcome. All the best to you as you continue to heal and find your voice again. Keep us posted on your progress! -Deb
Hi Deb and @jeffk, I've been thinking about you often and hoping all is well with you. It's been 2 years since the Gore-Tex implant to prop up my paralyzed vocal cord. About 10 months ago, I had another surgery, this time to take lipids from my abdomen and inject them into my vocal cord to plump it up and make better contact with the other one. It made my voice less raspy and gave me a little more volume. The benefits are expected to fade over time. On a good day, my singing range is half an octave in the baritone range, but I played my clarinet with the alumni band at a football game last fall, and it felt exactly like normal (even while marching). Good to have some endurance back. Continuing to be grateful for you and your inspiration! Take care. -Julie
Hi Deb and @jeffk, I've been thinking about you often and hoping all is well with you. It's been 2 years since the Gore-Tex implant to prop up my paralyzed vocal cord. About 10 months ago, I had another surgery, this time to take lipids from my abdomen and inject them into my vocal cord to plump it up and make better contact with the other one. It made my voice less raspy and gave me a little more volume. The benefits are expected to fade over time. On a good day, my singing range is half an octave in the baritone range, but I played my clarinet with the alumni band at a football game last fall, and it felt exactly like normal (even while marching). Good to have some endurance back. Continuing to be grateful for you and your inspiration! Take care. -Julie
Hi Deb and @jeffk, I've been thinking about you often and hoping all is well with you. It's been 2 years since the Gore-Tex implant to prop up my paralyzed vocal cord. About 10 months ago, I had another surgery, this time to take lipids from my abdomen and inject them into my vocal cord to plump it up and make better contact with the other one. It made my voice less raspy and gave me a little more volume. The benefits are expected to fade over time. On a good day, my singing range is half an octave in the baritone range, but I played my clarinet with the alumni band at a football game last fall, and it felt exactly like normal (even while marching). Good to have some endurance back. Continuing to be grateful for you and your inspiration! Take care. -Julie
Julie, thank you for sharing yet another successful leg of your journey. I am so happy that all of the prayers that everyone has said for you are being answered. As a runner, with comprised breathing because of my paralyzed vocal cord I have huge admiration for you being able to play the clarinet while marching. God bless and God speed!
Deborah, I had Laryngeal chondrosarcoma and presented with a hoarse voice and difficulty breathing. I saw 8 world class surgeons throughout the US and fortunately I met Dr. Eric Moore at Mayo. He was the only surgeon who had an approach that had a high probability of a successful outcome preserving all functionality. He removed my tumor in its entirety, opened my airway and preserved the one remaining vocal cord and kept in tact the paralyzed vocal cord so that I could breathe, eat and speak. I had a temporary trach that I was able to remove post op after a couple of months. I urge you to visit with Dr. Eric Moore at Mayo, he was the answer to my prayers. Jeff
@jeffk and @deborahe @colleenyoung
Hello,
I see this post is from a number of years ago, but thought I would reach out in case you might receive this message. I would love to know how you are doing since receiving treatment at Mayo. I have been diagnosed with a laryngeal chondrosarcoma which involves my left vocal cord and the cricoid cartilage. I live in New Mexico and had transoral CO2 laser surgery to debulk the tumor 2 years ago. Since then, there has been a reoccurrence of the tumor. At my last appointment at UNMH, my surgeon discussed a total laryngectomy, although they are taking my case to a tumor board. I’m very interested in your experience with voice preservation surgery, as I would certainly like to avoid a total laryngectomy.
Thanks so much,
Jane Heinstein
Hi Jane!
I was diagnosed in 2014 and was also referred for a total laryngectomy, at which point I got a second opinion at Mayo. My surgeon( who has retired) followed a conservative approach: I had two debulkimg procedures and then in 2017 a more extensive procedure to remove the tumor. I am doing well and have functioning voice, breathing and swallowing. No recurrence to date. I imagine that there are even better options today!
I would encourage you to get a second opinion.
All the best to you!
Hi Jane!
I was diagnosed in 2014 and was also referred for a total laryngectomy, at which point I got a second opinion at Mayo. My surgeon( who has retired) followed a conservative approach: I had two debulkimg procedures and then in 2017 a more extensive procedure to remove the tumor. I am doing well and have functioning voice, breathing and swallowing. No recurrence to date. I imagine that there are even better options today!
I would encourage you to get a second opinion.
All the best to you!
Deborah,
Thank you so much for your reply and advice. I’m so glad to hear that you are doing well, this is very encouraging news to hear. Yes, I do think I want to pursue a second opinion about my case. I really appreciate the opportunity to hear about your experience with this rare type of cancer/tumor.
All the best to you,
Jane
Deborah,
Thank you so much for your reply and advice. I’m so glad to hear that you are doing well, this is very encouraging news to hear. Yes, I do think I want to pursue a second opinion about my case. I really appreciate the opportunity to hear about your experience with this rare type of cancer/tumor.
All the best to you,
Jane
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Hi Deb and @jeffk , just letting you know that my vocal chord surgery went quite well. The surgeon used one of my muscles to attach the Gore-Tex wedge, as the trachea was too friable. He's expecting the muscle to atrophy such that the chord will be in the right position in a couple months. I feel so fortunate, as COVID policies were changing rapidly during the two days I was in the hospital. I was still able to have my follow-up bronchoscope last week, which showed that the airway looks great. I was allowed to start practicing with my voice a couple days ago. It's small and raspy, and it takes a few tries to get started, like a stubborn lawn mower. But I do think it will sound like the old me. The cats and my husband are thrilled to hear it. I think singing will be possible too. Hoping all is well with you and your loved ones. Take care!
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2 ReactionsJulie, What fantastic news! I’m so glad you were able to have your procedure done and have such an excellent outcome. All the best to you as you continue to heal and find your voice again. Keep us posted on your progress! -Deb
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1 ReactionJulie, thank for sharing such a bright spot amongst all the concern. So delighted that you were able to have the procedure and more importantly that it was successful. Hope that your voice continues it's path back to a new normal. I believe that it sound's like you will be joining Deb and I on the other side of all of this. I assure that at the end of the very painful journey is an unbelievable feeling of gratitude and appreciation for each and every day that we have with full functionality and life! Be safe and as Deb said, keep us informed we are cheering and praying for you! Jeff
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1 ReactionHi Deb and @jeffk, I've been thinking about you often and hoping all is well with you. It's been 2 years since the Gore-Tex implant to prop up my paralyzed vocal cord. About 10 months ago, I had another surgery, this time to take lipids from my abdomen and inject them into my vocal cord to plump it up and make better contact with the other one. It made my voice less raspy and gave me a little more volume. The benefits are expected to fade over time. On a good day, my singing range is half an octave in the baritone range, but I played my clarinet with the alumni band at a football game last fall, and it felt exactly like normal (even while marching). Good to have some endurance back. Continuing to be grateful for you and your inspiration! Take care. -Julie
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2 ReactionsThat is wonderful! Continued good health to you, Julie.
-Deb
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1 ReactionJulie, thank you for sharing yet another successful leg of your journey. I am so happy that all of the prayers that everyone has said for you are being answered. As a runner, with comprised breathing because of my paralyzed vocal cord I have huge admiration for you being able to play the clarinet while marching. God bless and God speed!
@jeffk and @deborahe
@colleenyoung
Hello,
I see this post is from a number of years ago, but thought I would reach out in case you might receive this message. I would love to know how you are doing since receiving treatment at Mayo. I have been diagnosed with a laryngeal chondrosarcoma which involves my left vocal cord and the cricoid cartilage. I live in New Mexico and had transoral CO2 laser surgery to debulk the tumor 2 years ago. Since then, there has been a reoccurrence of the tumor. At my last appointment at UNMH, my surgeon discussed a total laryngectomy, although they are taking my case to a tumor board. I’m very interested in your experience with voice preservation surgery, as I would certainly like to avoid a total laryngectomy.
Thanks so much,
Jane Heinstein
Hi Jane!
I was diagnosed in 2014 and was also referred for a total laryngectomy, at which point I got a second opinion at Mayo. My surgeon( who has retired) followed a conservative approach: I had two debulkimg procedures and then in 2017 a more extensive procedure to remove the tumor. I am doing well and have functioning voice, breathing and swallowing. No recurrence to date. I imagine that there are even better options today!
I would encourage you to get a second opinion.
All the best to you!
-
Like -
Helpful -
Hug
2 ReactionsDeborah,
Thank you so much for your reply and advice. I’m so glad to hear that you are doing well, this is very encouraging news to hear. Yes, I do think I want to pursue a second opinion about my case. I really appreciate the opportunity to hear about your experience with this rare type of cancer/tumor.
All the best to you,
Jane
@jane1962, if you would like to pursue a second opinion at Mayo Clinic, here's how to get started http://mayocl.in/1mtmR63
How are you doing with treatment decision making?