After radiation: Tracheotomy, feeding tube and hard to swallow

Hi, I sent a post 2 days ago. I have a very similiar condition as Eva marie. You responded to her post saying thier is a new surgical technique. Could you let me know on 4/13 what that entails? I would appreciate any help you can give me. Thank you!

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Hi, I am new to this site, and my username is Suz22. I also have a trach and I'm on a permanent feeding tube. I also do bleed under my trach. My situation is very similiar to evamarie's. I can't eat, drink, and can only whisper. Can you please let me know of the new surgical technique? My medical team told me they can't remove my scar tissue or fix my epiglottis, which is fused to my throat wall. They said I need a larengectomy. But too afraid to do that, and don't want it. Feel depressed at times. Appreciate any responses. ThanK you, God bless, and big hugs!

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Hi @suz22, I'd like to add my welcome too. It sounds like you are having a difficult time with the trach, scar tissue and bleeding. I'm tagging fellow members @karly @sepdvm @jeffk @phinken and @alpaca in the hopes that they may have experiences and tips to share with you.

Suz, have you considered getting a second opinion?

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Absolutely agree to minimally consider a second and third opinion. I had laryngeal chondrosarcoma and as a result of the cancer removal and reconstruction procedures I had a trach in for about six months. I found that excessive canula cleaning combined with 3 times daily doing a lavage really helped with breathing, swallowing and everything else. Moisture is another key which you appear to be doing frequently. Lastly I changed my entire trach on a weekly basis. My cancer did not require radiation so I cannot help in that regard. God Speed!

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Hi @suz22, I'd like to add my welcome too. It sounds like you are having a difficult time with the trach, scar tissue and bleeding. I'm tagging fellow members @karly @sepdvm @jeffk @phinken and @alpaca in the hopes that they may have experiences and tips to share with you.

Suz, have you considered getting a second opinion?

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@suz22 and @evamarie0077 I haven’t touched base with Cynde for awhile and need to introduce myself to Suzz and find so many things that make two similar. As a Volunteer Mentor on Connect I had the pleasure of meeting Cynde several weeks ago. I think moving to a new group was beneficial and I would like to suggest that Suzz would find many good connections there as well.
https://connect.mayoclinic.org/group/head-neck-cancer/
Meanwhile, although I have a totally different medical path, I don’t want to think of anyone not finding someone to talk with. So I will always be here for both of you, and hope that you might find help and support in knowing each other. Perhaps @jbhart38731 will post to share his findings from April 14. Since this is actually the first time I have paired two who have not “met”, will you please let me know if it is helpful to share the similar path with each other? And Suzz, how does the other site fit for you? Peace, Nancy

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Hi Nancy,

I will try the other site. Maybe it's a better fit fir me.
I'm akways greatfull fir any suggestions ir comments I might receive.
Thx for responding, and for the link.

Best regards,
Suz22

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@suz22. Hello and hopefully a nice Saturday where you are.
Since our last conversation https://connect.mayoclinic.org/ takes you to the new and improved Home Page and I wonder if you have tried it out. Would you mind letting me know if there is anything I can do for you?
Peace, Nancy

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Hi Nancy,
No, I haven't tried the new site yet. Can you send me the link?
Thx, Suz

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Hi Suz. Actually it is the same site, just much improved in response to the many requests from members like you. We are posting right now in the Group “Cancer: Managing Symptoms”. If you click on the three dots in the upper right of this page a menu will drop down. Click on “Home” and you will have a good look at all you need to move around in Connect. I don’t resend to be one who excels in all things computer, but these changes have made this easier even for me! Meanwhile, how have you been doing?
Nancy

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