Epiglottis Repair

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Epiglottis Repair

by Ed1001 on Sun Mar 01, 2009 12:00 AM

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Has anyone had their epiglottis repaired?  50% of mine was surgically removed during a 12 hour cancer "salvage" surgery 2.5 years ago.  The surgery and subsequent chemo saved my life.  The surgery resulted in an inability to eat any solid foods.  I have to drink my meals in a reclining position thereby letting gravity do some of the work that my epiglottis did in the past; basically protecting my airway while swallowing.  I've studied this part of the human anatomy and it is very complex.  There are lots of parts working together to make swallowing a natural function.  There are other surgery-related side effects that impact my swallowing (e.g., removal of a small part of my soft pallet, nerve removal within parts of my throat), but the epiglottis is the largest of the issues.  If anyone has any helpful suggestions, resources in which to point me, or success stories of epiglottis repair to share with me, I'd like to hear and pursue them.  Thank you. I have a blog at www.hncancer.blogspot.com.

RE: Epiglottis Repair

by nasso on Thu May 07, 2009 12:00 AM

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my father had his epigllotis completely removed back in 1999.  I believe it was complete removal because of cancer.

 Within 2-3 months he was able to eat anything he wanted.  He was given special excercises that strengthened his swallowing muscles.  There is also a technique in how to swallow.

 My Dad had a major surgery 3 mos ago to remove two cancerous growths from his lungs.  Unfortunately I believe because of his age 79 the operation did set him back and most of his body functions have slowed down.  He is unable to swallow as well as he used to.  I have asked his doctor to provide me with the excercise instructions he had before so that he will strengthen his swallowing function.

I am puzzled as to why you have to lie down to eat especially that you had a partial removal.  As soon as I receive the instructions I will forward them to you and hopefully they will help you eat regularly.  I am hoping to receive them within 2 weeks.

 Good luck

RE: Epiglottis Repair

by Ed1001 on Thu May 07, 2009 12:00 AM

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On 5/7/2009 nasso wrote:

my father had his epigllotis completely removed back in 1999.  I believe it was complete removal because of cancer.

 Within 2-3 months he was able to eat anything he wanted.  He was given special excercises that strengthened his swallowing muscles.  There is also a technique in how to swallow.

 My Dad had a major surgery 3 mos ago to remove two cancerous growths from his lungs.  Unfortunately I believe because of his age 79 the operation did set him back and most of his body functions have slowed down.  He is unable to swallow as well as he used to.  I have asked his doctor to provide me with the excercise instructions he had before so that he will strengthen his swallowing function.

I am puzzled as to why you have to lie down to eat especially that you had a partial removal.  As soon as I receive the instructions I will forward them to you and hopefully they will help you eat regularly.  I am hoping to receive them within 2 weeks.

 Good luck


 

I would love to see those exercises.  In addition to my epiglottis, they had to remove my left lower jaw (which they replaced by a piece of titanium and the tibia bone from my leg) and remove and then replace a 7 x 2.5 inch section on the inside of my throat.  As such, the muscles and nerves within my throat do not work all that well.  Add onto this the stiffness from the radiation and my swallowing anatomy is kind of a mess.  I would really enjoy eating again. I look forward to seeing and trying those exercises.  Regards.

RE: Epiglottis Repair

by Suzeku2 on Sun Nov 29, 2009 11:39 AM

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Hey there Ed. I was looking to see if there was a way to reconstruct my epiglottis when I ran across your post. I don't have cancer, but am prone to getting cysts/tumors in my sinus cavities (all benign). ANYWAY, my doctor removed my epiglottis completely during a surgery I had last year in which he also removed part of my soft pallet. I was told before the surgery that he was going to SHORTEN it, but NOT remove it. Well... surprise, surprise! I have had the most difficult time eating ever since. I choke often and I was hoping to find some information on if it's possible to have it "replaced/reconstructed" , but I haven't "googled the right words" i guess. If you have any information about this, please share!

RE: Epiglottis Repair

by tonyrosa on Sun Apr 01, 2012 10:32 PM

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I see this is an old post.  My husband had his epiglottis removed 23 yrs ago.   He struggled with eating all those years.  Now he has parkinsons which made eating more difficult and developed aspiration pneumonia.   They gave him a feeding tube in his stomache.  Did you ever find out if there is such a thing as replace/reconstruction of an epiglottis?

RE: Epiglottis Repair

by Ed1001 on Mon Apr 02, 2012 01:23 AM

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Hi,

I did not find anyone even remotely hopeful of a repair. I asked two of the best Head & Neck surgeons in the country. For me it's been almost 7 years. I understand first hand what I'm assuming is frustration and limitations brought about by this circumstance. You and your husband are not alone. I've continued to write my blog and the most recent two entries dealt with swallowing difficulties. If interested, gotowww.hncancer.blogspot.com, there may be something worthwhile for you there. I dread the day when I'm no longer able to consume my nutrition, no matter how liquid and bland it is, orally. I guess here's the one area of hope or positive news. I'm meeting with a surgeon that specializes in swallowing issues in June. If anything good comes out of that visit, I'll write about it in my blog. I do wish you the best. I know how hard this can be.

Ed S.

RE: Epiglottis Repair

by Ed1001 on Mon Apr 02, 2012 01:24 AM

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That's www.hncancer.blogspot.com

 

RE: Epiglottis Repair

by tonyrosa on Mon Apr 02, 2012 12:44 PM

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On Apr 02, 2012 1:23 AM Ed1001 wrote:

Hi,

I did not find anyone even remotely hopeful of a repair. I asked two of the best Head & Neck surgeons in the country. For me it's been almost 7 years. I understand first hand what I'm assuming is frustration and limitations brought about by this circumstance. You and your husband are not alone. I've continued to write my blog and the most recent two entries dealt with swallowing difficulties. If interested, go towww.hncancer.blogspot.com "" target="_blank" rel="nofollow">http://towww.hncancer.blogspot.com " target="_blank" rel="nofollow">towww.hncancer.blogspot.com , there may be something worthwhile for you there. I dread the day when I'm no longer able to consume my nutrition, no matter how liquid and bland it is, orally. I guess here's the one area of hope or positive news. I'm meeting with a surgeon that specializes in swallowing issues in June. If anything good comes out of that visit, I'll write about it in my blog. I do wish you the best. I know how hard this can be.

Ed Steger   

Thank you.   Yes i would like to know how that goes.

RE: Epiglottis Repair

by LaurelPam on Sat Apr 06, 2013 09:54 PM

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On May 07, 2009 12:00 AM Ed1001 wrote:

 

On 5/7/2009 nasso wrote:

my father had his epigllotis completely removed back in 1999.  I believe it was complete removal because of cancer.

 Within 2-3 months he was able to eat anything he wanted.  He was given special excercises that strengthened his swallowing muscles.  There is also a technique in how to swallow.

 My Dad had a major surgery 3 mos ago to remove two cancerous growths from his lungs.  Unfortunately I believe because of his age 79 the operation did set him back and most of his body functions have slowed down.  He is unable to swallow as well as he used to.  I have asked his doctor to provide me with the excercise instructions he had before so that he will strengthen his swallowing function.

I am puzzled as to why you have to lie down to eat especially that you had a partial removal.  As soon as I receive the instructions I will forward them to you and hopefully they will help you eat regularly.  I am hoping to receive them within 2 weeks.

 Good luck


 

I would love to see those exercises.  In addition to my epiglottis, they had to remove my left lower jaw (which they replaced by a piece of titanium and the tibia bone from my leg) and remove and then replace a 7 x 2.5 inch section on the inside of my throat.  As such, the muscles and nerves within my throat do not work all that well.  Add onto this the stiffness from the radiation and my swallowing anatomy is kind of a mess.  I would really enjoy eating again. I look forward to seeing and trying those exercises.  Regards.

Did you ever get those exercises?  I was just told that my epiglottis was frozen in the "up" position and I would probably never be able to eat solid foods or drink anything.  I would love to do the exercises and prove them wrong.  Thanks in advance

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