Upper oesophical stricture

Una

Hi I had squama cell cancer on my tonsil and received chemotherapy and radiotherapy. I am a year and 3 months on peg tube. I have upper oesophical stenosis and am only able to swallow a trickle of water. My oesophagus was unable to be dilated because it has gone so narrow after treatment and I was unable to swallow barium for barium swwallow. I am wondering if there is anybody with a similar problem or if someone has advice?
Thanks

sweetblood22

Hi Una. I am sorry you are
Hi Una. I am sorry you are having so much trouble with swallowing. It is very frustrating. I just recently got my peg removed after 17 months. I also have a stricture that is up very high. It was difficult to swallow the barium for the test. I have been dialated twice since rads and I still have trouble swallowing food and choke everytime I eat something. It takes me an hour to eat my food. The first time they dialated me he said he went from a little less than 2mm to 9mm. He thought this would allow me to swallow food, but I still couldn't. They then went in and stretched me again. I can now swallow soft foods and things that are chopped fine. I know he said it was pretty challenging because my stricture and damage are up pretty high.

Did they actually go in and try to dialate you? Or they just said they couldn't? I know that it usually has to be done a little at a time so they do not rip and or tear anything. I would find a second opinion. I'm not sure why they would not be able to get it open some. My proceedure was rough because I'm hard to ventalate and I don't think I am going to go thru it a fourth time. It was too risky for me. I have made it to where I was able to get rid of my peg, so I am going to be happy with that.

But I would try to find a specialist or another doctor. I wish you the very best.

Sweet.

Hondo

sweetblood22 said:

Hi Una. I am sorry you are
Hi Una. I am sorry you are having so much trouble with swallowing. It is very frustrating. I just recently got my peg removed after 17 months. I also have a stricture that is up very high. It was difficult to swallow the barium for the test. I have been dialated twice since rads and I still have trouble swallowing food and choke everytime I eat something. It takes me an hour to eat my food. The first time they dialated me he said he went from a little less than 2mm to 9mm. He thought this would allow me to swallow food, but I still couldn't. They then went in and stretched me again. I can now swallow soft foods and things that are chopped fine. I know he said it was pretty challenging because my stricture and damage are up pretty high.

Did they actually go in and try to dialate you? Or they just said they couldn't? I know that it usually has to be done a little at a time so they do not rip and or tear anything. I would find a second opinion. I'm not sure why they would not be able to get it open some. My proceedure was rough because I'm hard to ventalate and I don't think I am going to go thru it a fourth time. It was too risky for me. I have made it to where I was able to get rid of my peg, so I am going to be happy with that.

But I would try to find a specialist or another doctor. I wish you the very best.

Sweet.

Hi Una

Good advice Sweet, get a second opinion and see if there is any type of therapy that can be done to help your bode re-learn how to swallow again

All the best my friend

Una

sweetblood22 said:

Hi Una. I am sorry you are
Hi Una. I am sorry you are having so much trouble with swallowing. It is very frustrating. I just recently got my peg removed after 17 months. I also have a stricture that is up very high. It was difficult to swallow the barium for the test. I have been dialated twice since rads and I still have trouble swallowing food and choke everytime I eat something. It takes me an hour to eat my food. The first time they dialated me he said he went from a little less than 2mm to 9mm. He thought this would allow me to swallow food, but I still couldn't. They then went in and stretched me again. I can now swallow soft foods and things that are chopped fine. I know he said it was pretty challenging because my stricture and damage are up pretty high.

Did they actually go in and try to dialate you? Or they just said they couldn't? I know that it usually has to be done a little at a time so they do not rip and or tear anything. I would find a second opinion. I'm not sure why they would not be able to get it open some. My proceedure was rough because I'm hard to ventalate and I don't think I am going to go thru it a fourth time. It was too risky for me. I have made it to where I was able to get rid of my peg, so I am going to be happy with that.

But I would try to find a specialist or another doctor. I wish you the very best.

Sweet.

Thanks
Hi. Thanks for your reply and its good to hear you are off the peg. The Doctors did try to dilate my oesophagus but were unable to.Please God in time I will be able to swallow. Did you find that one day a little bit of food went down? Thanks. I appreciate your reply

Una

Hondo said:

Hi Una

Good advice Sweet, get a second opinion and see if there is any type of therapy that can be done to help your bode re-learn how to swallow again

All the best my friend

Thanks
Thanks. Its good to chat to those that understand.

sweetblood22

Una said:

Thanks
Hi. Thanks for your reply and its good to hear you are off the peg. The Doctors did try to dilate my oesophagus but were unable to.Please God in time I will be able to swallow. Did you find that one day a little bit of food went down? Thanks. I appreciate your reply

Did they say why they were
Did they say why they were not able to dialate it? Scar tissue maybe?

I would still get another opinion if you have not already. What one doctor cannot do, one may be able to easily.

Can you swallow any food at all? Thick liquids? Maybe if you could swallow emulsified foods then you might be able to step up from there. Speech pathologist? Maybe swallowing exercises? I got a food emulsifier and started with purreed foods and shakes. Gradually trying and trying and trying new and bigger pieces of actual food. I still use a chopper to mince my veggies before cooking. I cannot really swallow meats still.

I would be persistant and look for a doctor that could do something. To be brutally honest when I thought I would never eat again, I was so miserable. I was mad I did radiation. I thought I would have rather died being able to eat and should have just taken my chances. Having struggled with clinical depression and anxiety I really fell into another depression. The way I am now, it's not great, but i can live with this.

I would not rest until I could swallow something. Squeaky wheel gets the grease. Be persistant with your doctors and find someone that could help you. I really hope it will get better for you.

sportsman

Upper Esophagus Stricture
I have a very severe upper esophagus stricture. My opening before being dilated was very small. I think they measure this in centimeters and mine was only seven centimeters. I have now been stretched a total of five times over the last two and one half years. I was intially attempted to be stretched or dilated by a local gastroenterologist in my home town and he stopped the procedure for fear of causing more damage or severe bleeding. After doing some research I found that this procedure can be done what is called a balloon dilation which I assume can be only performed at major teaching hospitals. My is performed at Wake Forest Baptist Medical Center in Winston Salem, North Carolina. This is performed as a outpatient procedure under mild sedation by a doctor who specializes in swallowing disorders. My first dilation went from seven centimeters to thirteen centimeters and my last dilation has increased the opening to about nineteen centimeters. This has been a great relief to me in being able to get down food. I was about to the point I thought the PEG tube would have to be placed back in me before these dilations. I still do not eat normal by any means as my main stricture is more of a upper stricture and the dilation does not help this. Once the food gets past this stricture which was caused by radiation scarring it actually goes down guite well. Find out all the information you can get on this and never take one answer from the doctors. If I can be of further help, just let me know. By the way I failed to mention that the dilations are graduated a little at a time to keep from causing severe bleeding. They will also tell you that this procedure may have to be repeated over time to keep the esophagus open. Take Care and God Bless

Una

sportsman said:

Upper Esophagus Stricture
I have a very severe upper esophagus stricture. My opening before being dilated was very small. I think they measure this in centimeters and mine was only seven centimeters. I have now been stretched a total of five times over the last two and one half years. I was intially attempted to be stretched or dilated by a local gastroenterologist in my home town and he stopped the procedure for fear of causing more damage or severe bleeding. After doing some research I found that this procedure can be done what is called a balloon dilation which I assume can be only performed at major teaching hospitals. My is performed at Wake Forest Baptist Medical Center in Winston Salem, North Carolina. This is performed as a outpatient procedure under mild sedation by a doctor who specializes in swallowing disorders. My first dilation went from seven centimeters to thirteen centimeters and my last dilation has increased the opening to about nineteen centimeters. This has been a great relief to me in being able to get down food. I was about to the point I thought the PEG tube would have to be placed back in me before these dilations. I still do not eat normal by any means as my main stricture is more of a upper stricture and the dilation does not help this. Once the food gets past this stricture which was caused by radiation scarring it actually goes down guite well. Find out all the information you can get on this and never take one answer from the doctors. If I can be of further help, just let me know. By the way I failed to mention that the dilations are graduated a little at a time to keep from causing severe bleeding. They will also tell you that this procedure may have to be repeated over time to keep the esophagus open. Take Care and God Bless

Thanks
Thanks for your reply and advice. I hope you are still making good progress. Please God something can be done to help my swallow. All the best

Una

sweetblood22 said:

Did they say why they were
Did they say why they were not able to dialate it? Scar tissue maybe?

I would still get another opinion if you have not already. What one doctor cannot do, one may be able to easily.

Can you swallow any food at all? Thick liquids? Maybe if you could swallow emulsified foods then you might be able to step up from there. Speech pathologist? Maybe swallowing exercises? I got a food emulsifier and started with purreed foods and shakes. Gradually trying and trying and trying new and bigger pieces of actual food. I still use a chopper to mince my veggies before cooking. I cannot really swallow meats still.

I would be persistant and look for a doctor that could do something. To be brutally honest when I thought I would never eat again, I was so miserable. I was mad I did radiation. I thought I would have rather died being able to eat and should have just taken my chances. Having struggled with clinical depression and anxiety I really fell into another depression. The way I am now, it's not great, but i can live with this.

I would not rest until I could swallow something. Squeaky wheel gets the grease. Be persistant with your doctors and find someone that could help you. I really hope it will get better for you.

Thanks
Thanks again for taking the time to reply. I think I am unable to swallow as a result of the treatment. I get my nutrients through the PEG feed. I hope your doing well.

sweetblood22

Una said:

Thanks
Thanks for your reply and advice. I hope you are still making good progress. Please God something can be done to help my swallow. All the best

I started at 2mm and I am
I started at 2mm and I am only at about 13 now. It is a lot harder to deal with when it's up higher. Maybe if I decide to risk anesthesia again I will ask about the balloon proceedure. Right now, if I don't get any worse, I'm not risking it. Thanks for posting about that proceedure.

amy_evan2005

sweetblood22 said:

I started at 2mm and I am
I started at 2mm and I am only at about 13 now. It is a lot harder to deal with when it's up higher. Maybe if I decide to risk anesthesia again I will ask about the balloon proceedure. Right now, if I don't get any worse, I'm not risking it. Thanks for posting about that proceedure.

Hi Una
My name is Amy and my husband,Evan, had squamous cell cancer on his vocal chords also. He also ended up with a complete stricture right behind his voice box in the espophagus. Please look for another Dr. It took us several months to finally get something done for him and this included finding different Dr.'s. Two Dr.'s did the surgery that finally got him opened up enough to dilate. One went in from the mouth and the other through the feeding tube site. Not sure where you are located at, but his Dr.'s are at IU Med Center in Indianapolis,In. From what I have been able to find there are not many Dr.'s that have done this kind of surgery. This is due to the fact that a stint should be put in at the first sign of difficulty swallowing, but the higher up the blockage the harder it is to put in a stint. It's okay to tell the Dr.'s what you want to happen or be done to you. It's your right to not wait another "couple months" to see what happens. Evan is probably facing at least one more dilation, but he now has his feeding tube removed as of Oct.12 and is eating almost normally.
Hope this helps you some.

Best wishes,
Amy

Kent Cass

amy_evan2005 said:

Hi Una
My name is Amy and my husband,Evan, had squamous cell cancer on his vocal chords also. He also ended up with a complete stricture right behind his voice box in the espophagus. Please look for another Dr. It took us several months to finally get something done for him and this included finding different Dr.'s. Two Dr.'s did the surgery that finally got him opened up enough to dilate. One went in from the mouth and the other through the feeding tube site. Not sure where you are located at, but his Dr.'s are at IU Med Center in Indianapolis,In. From what I have been able to find there are not many Dr.'s that have done this kind of surgery. This is due to the fact that a stint should be put in at the first sign of difficulty swallowing, but the higher up the blockage the harder it is to put in a stint. It's okay to tell the Dr.'s what you want to happen or be done to you. It's your right to not wait another "couple months" to see what happens. Evan is probably facing at least one more dilation, but he now has his feeding tube removed as of Oct.12 and is eating almost normally.
Hope this helps you some.

Best wishes,
Amy

amy
great to hear the news about Evan. Sounds like you got a couple A+ Drs. there.

kcass