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Epiglottis not working right after treatment

jenandheath
Posts: 8
Joined: Dec 2012

Good evening all...My husband is now almost 9 months out of treatment. A couple months ago after continually having trouble with swallowing and choking the ENT sent him for a swallow test and it was positive for aspirations on all foods except really thick ones. The ENT said that treatment can sometimes cause your epiglottis to not work right and that he may need a trachea  or permenant feeding tube; niether of which were really discussed about when it should happen. Has anyone with cancer to the larynx had this problem? He was diagnosed with pheumonia today.

Hondo's picture
Hondo
Posts: 5608
Joined: Apr 2009

 

Sorry to hear this but it happens, I can no longer swallow and must live on a feeding PEG tube the rest of my life. My Cancer was up in my sinus but the wonderful treatment gave me some very bad side effects, but the good part is I am still here. I was in the hospital for two weeks with pneumonia because of aspiration that is when they put the PEG tube in, now it is just a part of my everyday life.  

 

Take care and God bless and be with you both

Hondo

Ladylacy
Posts: 457
Joined: Apr 2012

Cancer of the larynx is no fun.  My husband was diagnosed with it in July 2010.  He underwent radiation and chemo but then in March 2011 he had to have a omplete laryngectomy, partial neck dissection and reconstruction of his throat due to radiation.  We were told going in that the treatment for head and neck cancer was the worse.  From August 2010 until May 2011 he had a PEG tube because he couldn't swallow at all.  After that time he was able to eat but slowly and with lots of water to wash it down.  He has had a second PEG tube now since May of 2012 and will have one for the rest of his time.  He has never had any problems with aspirating.

I hope you are seeing a head and neck specialist.  Our local ENT when he had to do a trach and another biopsy in February 2011 referred us to a H&N specialist because he told us that if what my husband needed.  I wish we had seen one at the very beginning.

This is a great site for questions but only a few have laryx cancer.  WWW.webwhispers.com is another site that deals primarily with larynx cancer.

 

Wishing you and your husband the best -- Sharon

 

Grandmax4's picture
Grandmax4
Posts: 577
Joined: Dec 2011

On November 2,2011, I had di vinci robotic surgery to remove my epiglottis~~I had a cancer mass growing on it. With intense speech therepy, and doing exercises faithfully, I was able to regain my voice and developed a new way to swallow. I too, suffered a bout of aspirating pheunomia before I learned the correct swallow. After 1 year on soft and liquid, I'm now able (1 year 8 months out ) to eat anything I want, and my voice is loud and clear.

My worse experience was my family dr saying " you won't live without an epiglottis" She's no longer in my life.

Ruben and Jude's picture
Ruben and Jude
Posts: 152
Joined: Apr 2013

I'm doing a happy dance for you. We make choices of the people to keep in our life..... GOOD CHOICE!

debbiejeanne's picture
debbiejeanne
Posts: 2225
Joined: Jan 2010

what great news that u can now eat!!  i hope rachel sees ur post b/c she can't eat due to aspiration.  maybe she can learn ur swallow!  maybe u could pm her.  a loud and clear voice is always a good thing  Laughing  keep up the good work.

i'm very glad u don't c that doc anymore!!!!!!!

p.s.  what is an epiglottis?

dj

George_Baltimore's picture
George_Baltimore
Posts: 303
Joined: Jun 2009

An epiglottis is the little piece of tissue that covers the opening to your trachea (airway) when you swallow to keep food and liquids from going down intoyour lungs.  I had cancer of the base of the tongue.  As a result of the radiation in the area, my epiglottis has become curled and basically non-functional.  Since my dilations haven't been keeping my esophagus open, if I tried to eat food right now, my epiglottis would let it go into my lungs instead.  This could lead to aspiration pneumonia or death due to choking.

debbiejeanne's picture
debbiejeanne
Posts: 2225
Joined: Jan 2010

thank u, george.  there are several on here like u with this problem.  i'm sorry u r faced with such a serious side effect.  it is just amazing how much damage the drugs that saved our lives do to our body.  can ur epiglottis b fixed or is that a permanent side effect?  i wish u the very best.

dj

Duggie88's picture
Duggie88
Posts: 515
Joined: Feb 2010

I had my epiglotis removed along with part of the base of my tongue. I went through some therapy and I am eating and swallowing just fine. My radiaologist is impressed on how I have compensated for the loss. I will never win a pie eating contest because I do have to take my time. I would talk to the doctors and see if they can refer your husband to a speech therapist who also does the swallowing therapy. My surgeon felt confident enough to state that there was a 10% chance I would need a feeding tube the rest of my life but if I went elswhere it would jump to 35%. A bit cocky yes, but I sit here today without the feeding tube.

Where is coach Rachel? She is a long term survivor who can add alot more to your delemma.

      Jeff

debbiejeanne's picture
debbiejeanne
Posts: 2225
Joined: Jan 2010

rachel is off enjoying some quality family time and summer.  not sure when she'll b back.

dj

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