Living without an Epiglottis

Grandmax4
Grandmax4 Member Posts: 723
edited January 1 in Head and Neck Cancer #1
I wonder if there's anyone on here that has had cancer of the epiglottis? Mine was successfully removed November 2 ,2011.Lymph nodes removed, but tested NO cancer, so I did not have chemo or radiation, Thank God. The surgery was done by Robot at the James in Columbus, Ohio.
I am eating soft foods, and since January has been going very well. My speech therapist has released me from my sessions, my voice is back very strong, some days it gets a little hoarse, but I'm not complaining. I do my exercises every day for eating ( swallowing ) and for my voice...my little Grandson and I do my voice mmmmmmmaaaaaaaaa, mmmmmmmayayayaya, etc in the truck...he gets a kick out of coaching Grandmom.
I enjoy reading everyones posts and feel very close to you all, I know how blessed I am!!! I just thought it would be awesome to actually speak with someone that has or is living thru what I am...

Comments

  • George_Baltimore
    George_Baltimore Member Posts: 303
    #2
    Epiglottis
    Hi Grandma, Are you sure the epiglottis was removed? That's the little flap of tissue that covers your trachea when you swallow to keep food and liquids from going down your airway. My epiglottis is curled and shrunken from radiation and basically non-functional. Did they replace the epiglottis with some kind of device or tissue? If I tried to swallow anything right now, between the esopageal stricture that I have and the curled epiglottis, it goes down my airway. If they replaced it with something, I would be very interested in finding out what they did.
  • Grandmax4
    Grandmax4 Member Posts: 723
    #3
    George_Baltimore said:

    Epiglottis
    Hi Grandma, Are you sure the epiglottis was removed? That's the little flap of tissue that covers your trachea when you swallow to keep food and liquids from going down your airway. My epiglottis is curled and shrunken from radiation and basically non-functional. Did they replace the epiglottis with some kind of device or tissue? If I tried to swallow anything right now, between the esopageal stricture that I have and the curled epiglottis, it goes down my airway. If they replaced it with something, I would be very interested in finding out what they did.

    Epiglottis
    Yes, George.I am very sure my epiglottis was removed, I've taken months of therepy to learn new techniques in swallowing. In January, I had 2 spells of asperation pneunomia, one resulting in a 3 day hospital stay. After that, I was given a barrium x-ray and discovered by tucking my neck while swallowing, I was allowing food and drink to enter my lungs, quit tucking and I've had no asperation problems since, tho I do admit, I worry about it sometimes and it would be a glorious day if medical science would come up with an artificial epiglottis!!!
    I had surgery by robot to remove the mass and 4 nodes, no chemo or radiation was needed, my Dr/surgeon is wonderful and The James In Columbus Ohio is reknown for their expertise.
    Right now, I eat yogurt,applesauce,pudding,soups and broth with ritz crackers crushed in them, mashed potatoes and gravy, ice cream...I drink coffee, ensure shakes 2 a day, boost 2 or 3 a day, water, green tea, I've tried soda a couple times, but it still doesn't taste right, v8 juice.
    The surgery left my right ear numb, I can hear fine, the ear itself is numb, I also, am still driven crazy by the mucus in my throat, but it is gradually getting less.

    Do your Drs feel your epiglottis will heal? Have they recommended removing it? Thank you for answering my post and best of luck to you....
  • George_Baltimore
    George_Baltimore Member Posts: 303
    #4
    Grandmax4 said:

    Epiglottis
    Yes, George.I am very sure my epiglottis was removed, I've taken months of therepy to learn new techniques in swallowing. In January, I had 2 spells of asperation pneunomia, one resulting in a 3 day hospital stay. After that, I was given a barrium x-ray and discovered by tucking my neck while swallowing, I was allowing food and drink to enter my lungs, quit tucking and I've had no asperation problems since, tho I do admit, I worry about it sometimes and it would be a glorious day if medical science would come up with an artificial epiglottis!!!
    I had surgery by robot to remove the mass and 4 nodes, no chemo or radiation was needed, my Dr/surgeon is wonderful and The James In Columbus Ohio is reknown for their expertise.
    Right now, I eat yogurt,applesauce,pudding,soups and broth with ritz crackers crushed in them, mashed potatoes and gravy, ice cream...I drink coffee, ensure shakes 2 a day, boost 2 or 3 a day, water, green tea, I've tried soda a couple times, but it still doesn't taste right, v8 juice.
    The surgery left my right ear numb, I can hear fine, the ear itself is numb, I also, am still driven crazy by the mucus in my throat, but it is gradually getting less.

    Do your Drs feel your epiglottis will heal? Have they recommended removing it? Thank you for answering my post and best of luck to you....

    No such luck
    Hi Grandma, unfortunately the radiation did its thing on mine. It will never heal. It does cover the trachea a little bit and if my doctors could just find a way of keeping my esophageal stricture open, I would at least be able to swallow liquids again. I'm in the process of getting a second opinion from another gastroenterologist. I'm keeping my fingers AND toes crossed.
  • Ductape
    Ductape Member Posts: 1 Member
    #5

    I realize this question is ten years after your original post but, here goes. I have fought 5 aspirational pneumonia hospitalizations over the past two years, ending with my second PEG tube placement. I recently read a post from someone about reconstructive surgery to their epiglottis & now they can eat again. I would be very interested to learn anything about this procedure. If you can provide some information I would be grateful.

  • llewtudor
    llewtudor Member Posts: 3 Member
    #6
    https://csn.cancer.org/discussion/239907/living-without-an-epiglottis

    Hi I've not ever had cancer but my epiglottis was removed when I was about a year old due to complications with my tonsils.

    I am now 82 years old and have never had any problems until recently when some one remarked that I am a noisy chewer. This forced me into examining myself as I've never had a problem.

    Well first of all I've discovered that my tongue has adapted to protect my airwaves etc. What my tongue does is to push my food in a forward motion forcing me to chew my food in and around my eye teeth. As I say, I did not do it purposefully it happened on how I developed from childhood (baby hood).

    In chewing towards the front of your mouth your teeth there aren't designed for heavy chewing so not knowing why, I have always been known as a slow eater. As I have to chew my food longer than others. Only when the food is thoroughly mashed does my tongue then help to guide the food down to my stomach. This all happens without any concious effort on my part.

    For 80 years I never had a probl;em, I still do not have a problem in eating excepting that my bite is very strong and I believe is noticeable for any one listening carefully to my chewing.

    On chewing I have also discovered that chewing is good for your brain so much so that people who chew properly, (up to 32 times per mouthful plus minus for hard or soft foods) very rarely suffer from dementia.

    I'd like to hear from others in this respect, as there are many other plus/minus things that happen that I never knew was because I had no epiglottis that now makes sense.

  • wbcgaruss
    wbcgaruss Member Posts: 2,482 Member
    #7

    Well, llewtudor, welcome to the CSN H&N discussion forum.

    All I can say is Praise God and Hallelujah, you are eating well and everything is working well and has been for 81 years. I think the fact that one person thought you are a noisy chewer, only one person in 81 years speaks for itself. That's one opinion opposed to how many?

    This is one of the nicest postings I think I have ever seen on here. No cancer, no problems, no lumps, no bumps, no sore throat, no swollen neck or anything else, everything is good, not one single problem or complaint, only to say I'm 82 years old but my BIG problem is I am a noisy chewer. Fantastic.

    So I say if it ain't broke don't fix it. Don't go into a big evaluation of the situation, especially after 81 years of having no problems eating, EAT ON and enjoy life for many more years.

    Wishing You the Best

    Take care, God Bless

    Russ

  • llewtudor
    llewtudor Member Posts: 3 Member
    #8
    https://csn.cancer.org/discussion/comment/1710710#Comment_1710710

    Thanks for your lovely encouraging post. God Bless

  • llewtudor
    llewtudor Member Posts: 3 Member
    #9


  • MGC
    MGC Member Posts: 72 Member
    #10

    This is an amazing story. I cant imagine not having an epiglottis. Mine is swollen and does not move which makes it impossible to eat without aspirating. I keep trying but have had many close calls. I get 100 % of my nutrition through a feeding tube. Radiation 14 years ago and neck surgery trauma destroyed the use of mine. Sad there is not much help for such issues but congratulations on your triumph.

  • Tawni_Ledbetter
    Tawni_Ledbetter Member Posts: 3 Member
    #11

    My husband also suffers from aspirational pneumonia often, he had lower throat cancer, and radiation fried his esophagus and epiglottis. he is 100% on a feeding tube. I have recently researched replacing it, apparently, there are a few places in the US and Switzerland that will do it. I would love to hear from anyone else who may have had any success with this type of surgery.

  • Tawni_Ledbetter
    Tawni_Ledbetter Member Posts: 3 Member
    #12
    https://csn.cancer.org/discussion/comment/1711323#Comment_1711323

    have you researched replacing the epiglottis?

  • wbcgaruss
    wbcgaruss Member Posts: 2,482 Member
    #13

    Hello Tawni and welcome to the CSN H&N discussion forum.


    I would recommend you check out the Superthread at the top of the page there are loads of information in there with links and you will find it helpful.

    Also, are you questioning replacing the esophagus, epiglottis, or feeding tube?

    Take Care, God Bless

    Russ

  • wbcgaruss
    wbcgaruss Member Posts: 2,482 Member
    #14

    OK, I think I understand now replace epiglottis.

    Just search "replace epiglottis" on the internet, there is information on it such as this site...

    Epiglottic Reconstruction Technique

    https://emedicine.medscape.com/article/2051357-technique

    Just read the short intro and click on Next: Reconstruction of the Epiglottis Using a Radial Forearm Free Flap



    Here is another article...

    Can the Epiglottis Be Repaired?

    https://www.medicinenet.com/can_the_epiglottis_be_repaired/article.htm


    I do not know where you live but I would start by asking your care team or any of the doctors he had during treatment and even your family doctor for references. They probably know where you can get it done if possible and do the contacting, sending medical records ahead, etc., and make things easier for you.

    Also, you can check with any major medical centers, hospitals, teaching hospitals, or cancer centers in your area and beyond if traveling is not an issue.



    There is a place in New York, Roswell Comprehensive Cancer Center, that says this... "Offering head-to-toe solutions to restore physical appearance and function in any part of the body."

    https://www.roswellpark.org/cancer-care/treatments/plastic-reconstructive-surgery


    Here is their Home Page...

    https://www.roswellpark.org/


    I hope this offers some help and wish you the best.

    Our Motto On Here is NEGU (Never Ever Give Up)

    index.png


    Take Care, God Bless

    Russ

  • Tawni_Ledbetter
    Tawni_Ledbetter Member Posts: 3 Member
    #15
    https://csn.cancer.org/discussion/comment/1711841#Comment_1711841

    Thank you Russ, I have read most of those, of course my husbands Doctor, who MD andersen said we did the wrong treatment, says there is NOTHING that will ever help him. they just say eventually the pneumonia will get him. But I am determined to try anything I can, but after reading most of these comments it seems everyone is told that nothing can be done, especially if its due to radiation, which his is. But I will continue to try.

Discussion Boards