Just recently it was discovered by a speech therapist doing a barium swallow on me that my upper esophogus was completly closed. We would have never known if it wasn't discovered. I have been on a PEG for about 3 months. I was excited to read Melani's e-mail about her husband.I am supposed to have a dilitation on Wedensday how do I know that the GI DR. knows this special procedure Melani's husband had?????? Is ther a name for it??

Thank you for help.

Patrick

Patrick,

I don't have the answer to your question but I was wondering if this was caused by recent radiation or the radiation you received after you were diagnosed in 1995 with tonsil cancer?

Best Regards,

Patrick I would definitely copy Melanie's posting and take it with you.As you know, ordinary doctors are often not completely clued-up about ENT are are grateful of all the additional help they can get.

Hello Patrick

You might find this story of a patient's experience with this procedure called “Oh, My God!! I Can’t Swallow!” helpful.

Note:You will get a blank page as it is downloaded as a word document to open on your computer; look for it on your desktop or wherever your downloade files get stored. The html version has no pictures showing the before and after effects of the dilation.

Best wishes
Vinod

Dear Melanie,

Please let me know as soon as possible the name of the technique used to treat esophageal strictures and what kind of specialitst can perform it i.e, what kind of special qualifications do they need? I'm from Illinois and would be looking for someone to perform this procedure in the Chicago area.

Thank you so much for your help.

Jean

Melanie,

I hope you're still reading posts. I know it's been a few years since you wrote about your husband. My husband has a completely blocked esophagus as well and we are considering all options including the doctor you mention. How is your husband doing at this point?

Dear Melaine, dotty and others,
I have been on the peg for the last nine years and also know I will be on the same till I kick the bucket. I have a very wierd body which even has confused all doctors (the last was a reoccrance!). I know what it is to go through life with a peg let alone a few months or weeks. I on my part lead a pretty good life (as Dr. Joshi will vouch) - where I go to the gym regularly, go for my run everyday on the hour, go out shopping, driving . Well, I do anything I want except I cannot eat. Nine years with no much as a sip of water. If you ask me how I feel right now, I would not be able to answer this as I look at things and life in a very different way. I have been on the peg for nine years- I have accepted that its a fact and noone can change that(unless the medicos come up with something new - which they have and I am to be a test subject). I never dwell on my past of when I used to love chinese, eat at times at Mcdonalds or whatever. Its a closed chapter. I live for now and accept what I have now and make the best use of it. I have the same kind of food any normal person has - only it is in a liquid form. However, all my meals are packed with vitamins, carbo, protiens, fibre etc. and I mantain a very steady weight which is okay as per my hieght. I have had instances where my doctor actually asked me to cut down!!
I dont know if all this makes any sense - but not being able to eat and being on the peg is not the end of the world. One has to just accept things well knowing noone can turn the clock back. I feel moping, crying,self pity is wasting my life. Its wasting time when I could be doing other things I enjoy doing. I just look at things as they are and do not blame anyone for my problems. Someone has to suffer - well I was chosen - what could I do about it? Just accept it and carry on. What I am trying to say is - everything is in the mind, logic and acceptance. By moaning - its not going to affect anyones life except make it worse for all the family. Even friends will slowly disappear. Thats life.
I apologise if I have said anything that may hurt anyones sentiments as this is the only thing-of saying things that scare the h**l out of me.
I really dont think there is anymore Ican add.
with lots of warm regards,
Ananth

PS : sorry about my spellings. If the word makes sense its okay - but no laughing as I do know how to spell!!.

Dear Ananth,
You are a very strong man and how you have accepted your situation is very commendable. I had a peg for just five months and although I hated it, it surely was my savior. At 85 pounds, going through treatments would have done me in if it weren't for my continuous overnight peg feedings, but I found it very difficult and it caused quite a lot of pain. Your positive attitude is inspiring to me and I'm sure you will help many others dealing with this.

Best Regards!

Hi Melanie, thanks for posting. I was just diagnosed with esophageal stricture after radiation/surgery at UCLA. I would like yo hear more about your husband's solution. I have been on feed tube since surgery in june. started to eat some food until 3rd week of radiation. No meal in 7 mos! because aspiration was issue due to partial laryngechtomy, arytnoid removal and some epiglotis..am going to speech therapist 3x's week and making progress. last friday doctor at ucla saw the esophageal stricture and said no wonder your therapy isn't progressing. thank you in advance

You may not hear from Melanie as her post was a few years ago. I hope you are making progress and that your issues soon get sorted.
My husband had great difficulty with swallowing 4 months after the completion of his treatment and after his PEG was removed. Barium swallow showed he had 'pooling' in his throat due to restricted eosophagus. This was stretched surgically and literally opened up his whole 'old' world. He was back among the land of the eaters!
Good luck to you
Deborah

hi tomannmar

i have esophageal strictures too following radiation. I have had two operations that are talked about here. I think it is just called an esophageal dilatation. It does help but my consultant believes i will have to keep having the op for a few more years yet, as they can only stretch it a little at a time. However the first operation increased it from 2mm diameter to 10mm which made a massive difference to what i could swallow. its definately worth getting and it only takes a few minutes. You have a really sore throat for a few days, but hey we are all used to those!

i will dig out the operation consent form if i havent thrown it out as it will have the correct name for the procedure on there.

all the best
gordon

I am so glad I found this site, I had Base of the Tongue Cancer and don't know anyone else who has. I don't drink nor do I smoke.

Due to radiation scars causing a stricture, I have been on a Peg tube for a year now. I couldn't even swallow my own saliva.

I've recently had 8 Dilations basically one every week. They took me from 0mm to 16mm. For the first time, I was able to eat applesauce, pudding and yogurt (I was in heaven).

The doctor decided to give me a 3 week break to see how my esophagus would react; whether it would stay open or shut down. Unfortunately, it shut down, so now I am really concerned. During Monday's dilation, he was only able to reach 7mm. I'm scheduled for another dilation next week. I wonder if anyone out there has had a similar experience.

Hi Elina,

My mom had a tonsil cancer with some spread to her tongue base, so she had radiotherapy to th tongue.
She has now started trying to eat and drink but its terrible, she makes funny noiss, then she starts choking and it comes down her nose.
can see an end in sight to th peg, but we are assured that the problem does get better with time.
Have yyou found any improvment?
x

I went to my Swallowing Therapist today and she said just to continue eating soft things. I've noticed that I don't do well with liquids. I have a hard time drinking water and juices. However, thicker things like puddings and applesauce go down much easier.

As I was reading your e-mail, it just so happens I was trying to eat a creamy soup but it is too liquid and I was coughing/sneezing up a storm. I couldn't finish it. However, I had no problem eating a jar of baby food (Pineapple Delight)!

Your mom is lucky though that she is already starting to eat. I was unable to eat anything for a whole year due to the damage the radiation did to my esophagus. It's only been two weeks that I started to actually eat real food so that is definitely progress.

We just need a lot of patience and it does get better. At first I used to take small sips, now I can handle a normal teaspoon. I know what you mean about the funny noises. My throat used to squeel when I swallowed but that is now gone.

Melanie,


Hey, Melanie, you don't know me. My name is Matthew Dodson. I live in Louisiana where I have suffered from esophagus stricture for years now. I some how fell upon your blog post. It was by pure accident. I read your post about your husband. I have gotten to a point in my life where it consist of, "When will I give up and just die." As you may know, that is not a very good feeling or thought. I wanted to know if you could contact me and give me some info on this TREAD procedure that your husband went through. I am willing to travel the world for help. I have seen many doctors over and over, over sixty dilations, a visit to the Mayo Clinic with little hope of a normal life as I live with a peg tube and can not even swallow my own spit. It is really hard to live life and do the normal things as teaching, coaching and being a dad less alone sitting down and eating like a human. Many days I go without any nutrients in my body because I get so busy and am not in a secret place to put something down my feeding tube. Please, Melanie, if Dr. Sullivan is a man that has an answer to my life threaten issue-by all means can you please help me. I can not go on like this and spend every night crying wanting to end my life. It is only by the Grace of God and my belief in Him that I have lasted as long as I have. Cancer twice with radiation and chemo was hard enough but now with the doctors saying this is my life and I should just get use to it. This is not life as you well know. Please, again I ask, I so need some direction and help.

Thank you for your post that I fell upon,
Matthew Dodson
mbdrhino2@yahoo.com or bdodson@nat.k12.la.us (school email)
Cell: (318) 581-1906 Classroom number: (318) 472-6174 ex 136
I usually have my cell phone but sometimes I don't hear it. I teach a small class of special ed kids so my class phone is easy access. And the whole school knows my situation and they are praying for a miracle so if an answer is there they welcome me taking calls. We have been believing for an answer as we are planning on a school wide party for when the answer comes. The other day I went to yet another doctor seeking out some help. The whole school stopped their day and the whole school prayed at one time for me that the doctor would have an answer. He did say he would try steroids but nothing like you posted.