epiglottis damaged from raditation therapy

my dad has beat tonsil cancer over the past year with radiation and chemotherapy, cancer GONE, but his esophagus collapsed and his epiglottis has major scar tissue on it from the radiation therapy and is non-functioning therefore he still can not swallow. He had surgery on dec 11 to open the esophagus successfully but his Dr. and Vanderbilt and Wake Forest medical center has never seen a epiglottis damaged like this. Any time he attempts to swallow he aspirates? Any one out here have any information on where we can turn for help for any type of surgery for epiglottis repair?

I have been cancer free since fall of 2003.  I had cancer of the parafin sinus.  I have always had to deal with some swallowing issues.  As of last May it has gotten worse.  March 7, 2008 I had an emergency trache placed and a feeding tube.  I had pneumonia from aspirating food into my lungs and my breathing had become very labored.  Also, my epiglottis is severely scarred from radiation therapy in 2003.  The epiglottis is the cause for the problem with aspirating and difficulty breathing. I am in the process of being evaluated by ENT doctor in Denver, Co.  I have no news as to a solution at this time.

 

 

thank you for your reply. so sorry to hear you are still suffering with difficulty all these years later. my dad is also still on his feeding tube and is having his 3rd surgery on his esophogus on april 15 to dilate it further and possibly do something with his epiglottis. he is able to swallow a teaspoon of liquid with 7 to 8 swallow attempts at this time. we are still hopeful, and praying that this surgery gives some help to the situation. if you learn anything that we could possibly use, i would greatly appreciate any information you could provide us.I will do the same for you!!  thank you!!

My father was treated with radiation on his throat as a boy, and now is suffering with the same ailments you all describe. I'm wondering what was the treatment and how you all are progressing.

Sorry to say there have been no changes. If anything he is worse now than a year ago. The scar tissue is just terrible. He had his esophagus stretched July 21 and is having it done again on Aug 18. He has been to several doctors in different states including Wakeforest Hospital, Vanderbilt, and MD Anderson and everyone tells him the same thing. Short of rebuilding his throat and removing his voice box and living with a trach the rest of his life there is nothing that can be done to "fix" the problem. We just keep praying for a miracle and praying for technology to come up with a fix. People in general have no idea how this affects a person and a family's life not being able to swallow. Little and big things are affected. Family gatherings, going out to eat for socializing, church functions....food is a huge part of our lives and when you can't swallow it takes alot of enjoyment out of life for him and for those of us who love him.He is still cancer free praise God ....we can't lose sight of that, but his life and ours is forever changed!! Hope your Dad gets along well and gets relief of his own.

My husband was treated for stage 4 SCC diagnosed in October 2004. He had the standard 36 radiation and 6 weeks of chemo. He finished treatment in January 2005.He has not eaten by mouth since Dec 2004. He has a PEG. He has had 14 dilations to the esophagus and throat. He has had 2 tracheotomies(tube in throat to breathe) both have been were removed. His throat was basically "fried" by the radiation he received. He has non stop mucous production and his voice has been permanently weakened. We were reassured the side effects of treatment were temporary. He cannot swallow his own spit. We were told if he even tried to swallow he would choke to death because he has no epiglottis as it was severley damaged by the radiation (that is the piece that covers your airway when you eat so food does not go into the lung). It has been a long 5 years for my husband and 2 daughters and I feel your pain and frustration. Please update us on your situation. You never know when a miracle will happen for us.

I have been looking for someone else with the same problems my husband has... We understand how it feels...he was hoping to be eating by Thanksgiving.  What is this all about? we are new to this problem.  Please reply and talk to my husband or me.  Just to -maybe- put our heads together on this matter.

I had radiation and chemo also, since early 2007, i have not been able to eat or drink since. it appears due to the epiglottis being scarred. I am trying to decide whether i should have it removed altogether or shortened. The epiglottis forms a pocket in my throat that causes the food/drink to get stuck there, sometimes i aspirate, other times the food will sit there for up to 12 hours before i cough it out.

its amazing at how little the doctors know about this. I to was told that my cancer of the neck was 100% curable. I was eatting fine when they removed the cancer, but because they could not determine the primary, they performed radiation on my entire neck, killing my saliverty glands and everything else. I feel like putting those doctors under the same treatment, this is not a cure, but a form of torture. This is not a life, i am very frustrated at the lack of care and knowledge. I have an appointment at Mass General tomorrow and will insist on solutions.

My Dad's condition is still the same. He goes every 3 to 4 months for a throat dilation but it doesn't really solve anything. I am like all of you...just uterlly AMAZED at the lack of knowledge of this condition and appalled that they continue to do treatments in this manner with these results. My Dad's life and ours has been forever changed. People say  " At least he is cancer free and still here with you" and yes praise God he is,  but the quality of life that he has been given is not a fun life. Food is all encompasing.... fellowship, family gatherings, taking a sip of water when you are boiling hot. Everything in our society focuses around food and the enjoyment of food. Holidays are especially tough on him and the rest of us as well. I feel for all of you, especially this time of year!! Hopefully a miracle can be found- I pray it will!!

Reading all these posts has made me very, very fearful. Do you all feel that the ROs were at fault? I heard the Radiology part is extremely complicated and should be done by someone very experienced in HN cancers. How can you know?

My heart goes out to all of you who have suffered so. 

My husband is starting Chemoradiation THerapy right after Christmas. He is feeling wonderful, eating more and various foods every day ~ but he still has a least one enlarged cancerous node in his neck, even after "successful surgery." So I don't see that we have a choice. Just as you didn't, except in retrospect.

I'll be praying for all of you, both caregivers and patients. Being a caregiver myself, I'm intimately aware of the pain in watching a loved one suffer. the "what ifs". second guessing everything we do (or fail to do.)

May God bless you with his peace, the peace He gives in the middle of trials. Ask Him for it, He will in no way turn you away!

Diane