Cricoid Chondrosarcoma

Posted by deborahe @deborahe, Feb 25, 2017

I am currently being treated for this rare cancer at Mayo Rochester. Anyone else with this condition?

Interested in more discussions like this? Go to the Head & Neck Cancer group.

Did they also discuss changing the whole trach once a week and fully cleaning it and rotating them? My wife whose name also happens to be Deb would pull out trach and insert a clean one that she would have all set up with the collar. Because I had a strong cough mucus woul also escape around the trach and I changed split gauze very frequently as well.

Also meant to ask if your tumor damaged one of your vocal cords? I have one that it totally paralyzed. When was your procedure?

You have to remind yourself at least three times a day that this is only temporary! Focus solely on getting it out. Jeff

REPLY

Hi Jeff, I’ve been back for checks weekly, so they change out the trach at my visits. It seems I’ve had a very similar experience to you.
Yes, one vocal cord is paralyzed, so my voice has been compromised for some time. But some voice is better than no voice at all.
My surgery was on April 4. I’ve also had a big neck brace that holds my head in a flexed position with chin down since my trachea was rotated to limit stress on the surgical area, but that comes off in a few days.
Do you need any additional procedures at this point? You must be about 6 months post surgery. Do you feel you’ve recovered completely yet?
Thank you for your continued messages and support! I really appreciate it!

REPLY
@deborahe

Hi Jeff, I’ve been back for checks weekly, so they change out the trach at my visits. It seems I’ve had a very similar experience to you.
Yes, one vocal cord is paralyzed, so my voice has been compromised for some time. But some voice is better than no voice at all.
My surgery was on April 4. I’ve also had a big neck brace that holds my head in a flexed position with chin down since my trachea was rotated to limit stress on the surgical area, but that comes off in a few days.
Do you need any additional procedures at this point? You must be about 6 months post surgery. Do you feel you’ve recovered completely yet?
Thank you for your continued messages and support! I really appreciate it!

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Yes six months past my major surgery.  Had a few setbacks along the way and had the trach in for 4 months.The good news is that I am back at work, breathing, eating and talking.As the doctor says my new normal.  I asked him to make sure that my c voice ended up between Luther and Barry.  He did good I can talk.  Have a great day.  

REPLY
@deborahe

Hi Jeff, I’ve been back for checks weekly, so they change out the trach at my visits. It seems I’ve had a very similar experience to you.
Yes, one vocal cord is paralyzed, so my voice has been compromised for some time. But some voice is better than no voice at all.
My surgery was on April 4. I’ve also had a big neck brace that holds my head in a flexed position with chin down since my trachea was rotated to limit stress on the surgical area, but that comes off in a few days.
Do you need any additional procedures at this point? You must be about 6 months post surgery. Do you feel you’ve recovered completely yet?
Thank you for your continued messages and support! I really appreciate it!

Jump to this post

Hello, Hope this finds you well on your way to recovery. Just wanted to check in to see how you are progressing? Remember the trach will come out and it will be one of the happiest days of your life. Jeff

REPLY
@deborahe

Hi Jeff, I’ve been back for checks weekly, so they change out the trach at my visits. It seems I’ve had a very similar experience to you.
Yes, one vocal cord is paralyzed, so my voice has been compromised for some time. But some voice is better than no voice at all.
My surgery was on April 4. I’ve also had a big neck brace that holds my head in a flexed position with chin down since my trachea was rotated to limit stress on the surgical area, but that comes off in a few days.
Do you need any additional procedures at this point? You must be about 6 months post surgery. Do you feel you’ve recovered completely yet?
Thank you for your continued messages and support! I really appreciate it!

Jump to this post

Hi Jeff,
I see my surgeon tomorrow to check progress and I’m hoping for a good report! I really appreciate your support and input as it is nearly impossible to find good information on trach care management from a patient perspective. I don’t feel they stressed enough the importance of humidification. I am looking forward to celebrating the day it’s gone and hope it is soon!
-Deb

REPLY
@deborahe

Hi Jeff, I’ve been back for checks weekly, so they change out the trach at my visits. It seems I’ve had a very similar experience to you.
Yes, one vocal cord is paralyzed, so my voice has been compromised for some time. But some voice is better than no voice at all.
My surgery was on April 4. I’ve also had a big neck brace that holds my head in a flexed position with chin down since my trachea was rotated to limit stress on the surgical area, but that comes off in a few days.
Do you need any additional procedures at this point? You must be about 6 months post surgery. Do you feel you’ve recovered completely yet?
Thank you for your continued messages and support! I really appreciate it!

Jump to this post

Hello Deb, I wanted to check in to see how much progress you are making. I hope your recovery is generating positive results. I know how hard it is and your positive attitude will see through it. Let me know how you are. Jeff

REPLY

Hi Jeff! Thanks for checking in. I was at Mayo this morning to have the trach removed, so it was a very good day! Your advice and tips have been a great help to me. My voice has a ways to go yet, but I believe it will continue to improve. Hope all is well with you! Deb

REPLY

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

REPLY

Thank you, again, Jeff. You continue to be a great source of information and encouragement. I was expecting to feel like I could breathe better right away and that is not the case. Also very dry mouth and throat so your tips are very timely. All the best to you, Deb

REPLY
@deborahe

Thank you, again, Jeff. You continue to be a great source of information and encouragement. I was expecting to feel like I could breathe better right away and that is not the case. Also very dry mouth and throat so your tips are very timely. All the best to you, Deb

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What kind of nebulizer did you use?

REPLY
@jeffk

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

Jump to this post

@jeffk You are offering some great suggestions! Teresa

REPLY

The home nebulizer we bought from the Mayo Store and it was a Respironics brand Compressor Nebulizer.

Here is the link to the one we purchased from the Mayo Store:
http://www.usa.philips.com/healthcare/product/HC1099966/innospire-essence-compressor
I used the normal saline solution used for the lavage process and it really helped. Did it 3 to 4 times a day. Good luck, Jeff

REPLY
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