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Hi Matthew, my name is Yvonne. I read your email yesterday it made me cry. I understand exactly how you feel. I too have a stricture and have not been able to eat or drink for two years now. I had a radical neck dissection chemo and radiotherapy to both sides. My tumour was on my right tonsil they took that out too. The burns to my neck were severe I felt like one of those zombies you see in the horror films.
Sixty operations is an awful lot. I have now had three. All unsuccessful. I mentioned the procedure Mel explained to my surgeon so the last time he tried it with another surgeon going through my PEG site. Unfortunately the surgeon going through my PEG site could not get the instrument with the light up at all. He is willing to give it another go but it will mean opening the stomach more so he can get his hand in to guide it.
The anethetist had problems the time before keeping my airway open so this time I had to be awake while he put a tube up my nose into my lungs, this was very uncomfortable and made me heave lots, but was neccessery.
My next oppointment is June 8th to discuss a further op.
It is lovely that you have the whole school preying for you. My collegues also have been preying for me and have also said we will all go out and cellerbrate when the operation is a success. Oh how I can't wait for that day! I still had a party on my 50th and invited all my work mates. I now am hoping that when my two children get married I will be able to cellerbrate like everyone else does with a glass of champaine and a lovely meal.
Sorry if I've gone on a bit, I couldn't not reply to your email when you are feeling so desperate. I too cry a lot so does my partner who has been there throughout this terrible journey.
We went to the theatre Saturday evening, my daughter was singing and dancing along with others. I got very emotional and thought to myself this is what makes life worth living.
My son is doing well also.
Take Care Matthew,
All the Best.
Yvonne from the UK
Matthew, just one other thing I was worried about reading your email, perhaps you should think about having your feed at night, I say feed as it's not quite a propper meal but does have all the nutrition our bodies need. I run mine for eight hours a night, it's called Nutrcia Nutrison, Energy Multi Fibre. It works by pumping the feed in to my PEG. Then in the day I just need to take my meds and water. I don't know if you might have something similar where you live then you don't have to worry about it in the day.
Sorry about any spelling mistakes Iv'e made.
Hope this helps,
Thanks for the reply and concern. As you very well know life with a peg tube and the idea of living a some kind of normal life do not go hand in hand. I have thought of the night feedings as the day is just too busy to stop for a feeding. I did visit Dr. Suvillan last week. I drove to North Carolina with a friend of mine. This friend is a teacher friend but a hound dog on finding a cure for me. I think she may be an angel and just hasn't told anyone. Anyway, the visit to Dr. Suvillan did not go quite like I had expected but yet got some good news. I thought the TREAD was something different. I did not realize it was simple steroid injections to both ends of the scar tissue. Dr. Suvillen told me, after he and I spent an hour chatting, that he would simple go in from the top and inject steroids. Not use my peg tube at all as anvenue to reach the scar tissue. As it had happened I had already scheduled an appointment with a new doctor back home. Dr. Suvillan recommended that I just go to him and see if he can help. If not I could always come back to him and he would help me. The drive of 15 hours steered me back to seeing the doctor here at home. Well, I had the procedure done just this past Monday. The doctor wants me to come every other week to have the steroid injections. As of Monday, I am swallowing liquids and even more thrilling, my own spit. Doc says to for me to take in only clear liquids for two weeks. I am expecting the next injection he may move me to swallowing something a little more pleasing. Nevertheless, after the long time of not even swallowing my spit, the liquids are a welcomed thing. I am very tempted to eat something that I can chew on. I was in the habit, before injection, chewing on food and pretending I was swallowing it. I would let it go down and then spit it up knowing it would not go down. I tried this the other day and thinking I would do my regular routine of swallow with ready to spit it out. I forgot I had the injection. Well, to my shock, surprise and even fear, I actually swallowed it with no trouble. I couldn't believe it and my daughter laughed and saidk, "Yea, sure you forgot." It was the best freakiing taste I have had in the very very long time. Now to keep myself for the next two weeks from putting another cookie in my mouth. What a concept - eating. I do hope the procedure you are having works. I would recommend the steroid injections. It is known that steroids break up, loosen, and even flatten scar tissue. God bless and I will be lifting you up in my prayers. God is good and He wasn't us healed. But I have realized we sometimes have to do a little work to show Him that we really want the healing. I will let you know how the next injection comes out. I am hoping for mashed potatoes. Not really, I really want some pizza.
Matthew B. Dodson
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Hi Matt, that is fantastic news!! I am so pleased for you. I also like to taste food as my taste buds are almost back to normal. I can be coughing up food though that gets stuck in my wind pipe if I'm not careful. It's just horrible having to spit it out but I have to. A videofluoscopy showed a complete blockage. I feel I have been through hell, what with miss diagnosis for months being treated with thrush tablets acid tablets antibiotics then to be told I have stage 4 tonsil cancer was a shock, I had one night to choose what operation to go for. I did not fancy having my jaw broken so chose this one never thinking I would never be able to eat again. Did you have speech therapy along with your treatment? As no one helped me with my swallowing issues till two months after treatment, it never helped. My first surgeon told me it was an overdose of radiation. But reading emails on the tonsil cancer web site if I had continued swallowing throughout treatment It would keep all the muscles working. Unfortunately I didn't find the site till months after. I have an appointment this wednesday 8th June. It would be great if steroids work so I didn't have to go through what I went through last time and waking up with an even bigger scar on my tummy and still not be able to swallow. Befor my last operation I did ask if he was going to use steriods and a stent but he said no. Surely if that is all it takes you would think they would use them.
Let me know how you are getting on,
God has kept His Promise to me. I have lived in pain, trouble swallowing, and a feeling of dispare. A year and 1/2 of not eating or swallowing my own spit has been pure hell. The last six weeks have transformed my life. I have been eating anything and everything I want. I am in awe with what the steriod shots have done for me. This new doctor says he has never dealt with such a severe case as mine. I have had 3 shots and go for a 4th one next week. Doc says aim is to get me open to 15mm and then will consider removing my peg tube. I have not used my peg tube in six weeks since the very first steroid shot. This is amazing and I have a hard time with doctors who do not have this procedure. I have been to doctor after doctor with them all telling me there is no hope for me. I should just get use to living with a peg tube or consider having my stomach turned in to a tube so I can swallow. That sounds like a bad way to live. I am so glad I did not go that route as one doctor had suggested. The Dr. Sullivan visit was a good one since he told me that steroids was what he would do and that is all his procedure was. And here I found a doctor to do the exact same thing right here in my back yard ( an hour away from the small town I live in). Yes, if you have not found help or a doctor to try steriods then you really need to find another doctor. As this new doctor told me, "It sure is worth a shot, it just might work." He is amazed that the steriods is working so fast with the severe issue I have. But, I belive God has put His hand in all this and has brought me to this doctor and yet He contines to guide this doctor as well as make the steriods work so well. Please, Yvonne, don't give up and find a doctor who will give steriod shots a try. It sure can't hurt. You can just imagine after 10 years of swallowing problems and a year and 1/2 of not swallowing at all how I must be feeling. My kids ( 24 and 22 years old ) are so happy to see their dad living again. They said the other day, "Now there is the Dad we know." Take care and if you need to talk please email me : email@example.com. I welcome your email. I want so bad for others with our condition to get help. And by the way, no speech therapy or therapy to teach me to swallow. I am back to regular life other than the peg tube haning out my stomach.
Matthew B. Dodson
I have read all your information you submitted and am very happy for you. I have had cancer twice also with chemo and radiation. My esophagus is completely closed. Have been to several doctors that can not open it. They can't even find where the opening is supposed to be because of all the scar tissue. M D Anderson in Texas did try to go from the stomach, but was not sucessful. The doctors want to remove my esophagus and pull the stomach up, but I don't want that. I have asked them if they have heard of using steroid injections and always get the same answer. They tell me that there has to be an opening there for the steroid shot to work. I have not even had a drink of water in a year and a half. Can not swallow my own saliva, therefore keep getting infections in my trachea and lungs. I have sent all my records to Dr. Sullivan, but not heard back from him yet. I hope that he will be able to help me because no one else has been able to. I hope that you are still doing great. You can also contact me by email at firstname.lastname@example.org
My friend just had surgery for a complete esophageal closure. He hasn't been able to swallow even his saliva since 1/11. They put in a stent that is sewn in place. It is too painful and he can't tolerate it. Has anyone heard of this as I am most certain this is the first time the doctor used a stent. It sounded like Sullivan put in a tube rather than a stent. This is only inside, it doesn't come out his nose. He is in LA and I wish he could travel to
My mom was diagnosed with lung cancer on 1/30/11. She suffered every side effect one could imagine from chemo. Then she had radiation hell!!! After radiation her esophagus began to close up and 2 months ago she had a PEG tube put in. Last month the gastro dr. tried to stretch her esophagus, which did not work due to large amounts of scar tissue and fear of puncturing. Basically, everything everyone else has said. I called MD Anderson yesterday in Houston, Texas thinking they may have state of the art procedures for scrictures of the esophagus. Anyone ever tried MD Anderson? Dr. Sullivan in NC sounds like a God send. Melanie, I would love to talk to you about your husband's experience with Dr. Sullivan. Seeing my mom get the horrible news that there was nothing they could do to help her broke her heart and mine. I am willing to do whatever I need to do to get her help so she can get off the PEG tube and have some simblance of normal life. I'm not sure if you can privately comment back to me or if I need to put my number out there or if someone, who had a successful experience with Dr. Sulliven.
In dire need of help for my mom.
My father is a patient of laryngeal cancer for which laryngectomy was done.. and radiotherapy, chemo was also given.. now he has developed esophageal strictures along with esophageal diverticula..
they couldnt treat his diverticula because they couldn't pass the pharyngoscope as the strictures are present.
they said to us that his esophagus will rupture if they try to remove the stricture.
they are saying that there is no treatment for him..
please help us
I´m sorry to hear your news. Maybe Dr, Joshi can suggest a solution. Meanwhile, try to be strong. Besides looking after your father, take care of yourself, too. Your father needs you healthy.
You are in my thoughts
I am new tot he forum but am interested in the TREAD procedure being offered in North Carolina as I may need it. I go for a gastroscopy this week and I know I have an oesophagal stricture from my swallowing test. Does anyone know of the approximate cost of the procedure because I will have to get it approved by our Provincial Health plan and I am not sure if they will cover the cost and I may have to pay for it myself. Thanks
Hi Melanie! Your message here about your husband condition makes me feel good with full of hope to recover my normal swallow condition. I want to remove my NGT tube and totally eat solid foods again. Please share to me how can I overcome this swallow difficulties caused of stricture, I've been suffering of this for almost 2years, I will be thankful if you will share to me your husband's recovery, pls..This message has been edited. Last edited by: EveCon,
Hi People! I would like to share here a little something that maybe can help also to those who had a same cancer case of mine (Stricture caused of Radiation Therapy). 2yrs now since I was diagnosed of Esophageal Cancer and because of radiation effect I got stricture that gives me swallow difficulties. Every time I intake foods in my mouth it always bounced back to vomit because of stricture makes my esophagus totally closed. One time, 1st week of July this year, I felt so desperately and frustrated to swallow, so all the foods I intake through my mouth, I just chew it & vomit it, same with the liquids. Then, just for a change and try out, I drunken softdrinks as to wash-out all the sweets I intake I used to eat and I done it for the whole day. Then the next day, I woke-up with throat pain but surprisingly the liquid I sipped was not bounced back to vomit until I finished sip my drink (1 mug of choco drinks as part of my breakfast). Then I sipped next my osterized food which gone down through also in my esophagus and I used to do it again & again for the next day until this time but not yet with solid foods. Every time I felt become clogged I used to sip softdrinks (pepsi or sarsi) to make me swallow liquids again. So, I therefore concluded, that something in softdrinks help washed out that something clogged in my esophagus that makes me swallow liquids again. That's it... just wanna share this idea but I'm not sure if this also effective to others...
Thanks for sharing your experience.
Was this through mouth not NG tube? Cola drinks have been found useful in clearing PEG tubes.
Disclaimer: Please see your own dentist/doctor for a proper diagnosis as my words should not, in any circumstances, be taken as dental/medical advice.
"If you see what is small as it sees itself, and accept what is weak for what strength it has, and use what is dim for the light it gives, then all will go well. This is called Acting Naturally."
Lao-Tsu, Tao Teh King