I am currently being treated for this rare cancer at Mayo Rochester. Anyone else with this condition?
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Congratulations, how exciting and what a BIG day! My learning from post trach removal is; when coughing, speaking or doing anything with your voice do place a few fingers over the area where the trach was, use a nebulizer to provide moisture and take some Musinex D. The good news is that the hole will close very quickly. Patience is still required to allow your body to learn how to breathe normally again. Good luck. Jeff
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Deb, wanted to see how you are progressing post trach. I bet you miss the noise at night from the device used to provide moisture for the trach. Hope all is well. Jeff
Hi Jeff, I don’t miss a darn thing about that trach! (I never had the nighttime humidifier mask, which I think I should have had.) My voice is improving slowly, though my breathing seems about the same as it did with the trach. It’s good to be able to communicate verbally once again. I am sleeping so much better now and that makes a huge difference. How long did you feel it took for you to get back to your pre-surgery level of activity? Hope you are doing well, too. Deb
Hi @deborahe and @jeffk!
I’ve enjoyed reading the support and information the two of you have shared and provided for each other here on Connect. This is what Connect is about and great to see it in action. Deborahe, so glad to hear your trach is out and you are on the path to recovery! great news!
You both mentioned paralyzed vocal chords- I’m curious if a voice specialist would have tips to help strengthen your voice? Did Dr. K or Dr. Moore talk about that? or was that not an option for either of you?
I hope both of you enjoy the rest of the weekend!
Hello, I have a follow-up visit mid July with Dr. Moore and I suspect that it will be a topic of discussion. The good news is that for my partners in the business is that they have to pay close attention to hear what I have to say, a real change of pace. Jeff
Hello Deb, I wanted to see if your breathing is still improving. Mine continues to improve along with time and exercise. I am running again, albeit a lot slower and not as far, I was a marathon runner. All in all patience and persistence and the desire to want to be as close to whole as possible. Wishing you all the best.
Hi Jeff, Great to hear that you are running again-that is truly inspirational! I’m a walker, and getting back at it, which feels great. Progress has been slower than I’d like, and definitely a challenge to impatient nature! I just saw my surgeon on Wednesday and will see him again in 3 months for a scan. You had mentioned that you had an appt coming up in mid-July; have you been back for that yet? Have a great summer!
Hi Deb, I just wanted to tell you how much I appreciated this discussion. I'm hoping things are going very well for you and also for Jeff. This condition is so rare that I'm having a hard time finding relevant information to help me stay positive. (My surgery and diagnosis took place in mid-January 2020.) So, thank you very much for this! Julie
Hi Julie, You are post surgery and that's fantastic! I'm glad you found @jeffk and me; I know how hard it is to find someone with this specific condition. jeffk was a lifeline for me when I had a lot of questions. How are you doing now? Where and with whom and what surgery did you have? -Deb
Julie, we are members of a very small and special family of thriver's. Please let Deb and I know how you re doing and all of your concerns and questions. We would very much want to share our learning's and experiences. The good news is that we made it through the unending overwhelming question of will we really ever get the trach out? We both did and Deb did it in record time. Let us know how we can help. God Speed! Wish you a speedy recovery. Jeff
Hi Deb and @jeffk , my surgery was a tracheal resection for cricoid chondrosarcoma, Stage 1 and 2, at University Hospitals in Cleveland. It all happened so fast that I didn't do any research about best hospitals, so I was very fortunate to have an amazing surgeon (Dr. N. Scott Howard) and surgical team. Eight day hospital stay; trach removed two weeks after surgery. I can manage a soft whisper in a quiet room. Working with a speech pathologist to get off the dysphagia diet. My next surgery is in mid-March to reposition my vocal chord and hopefully get my voice back. Hoping for a nice alto singing voice. Thank you again and enjoy your day!
Good luck with your next surgery and take good care of yourself. Let us know how it goes!
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