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Esophagus keeps restricting

Posted by shaymar @shaymar, Jun 3, 2024

Hello everyone,
I had an esophagectomy, followed by a major complication of a leak, in July 2023. This past April I had 3 procedures, 3 weeks in a row, to expand my esophagus with a balloon because it had constricted and I could not swallow food. Then last Tuesday I had another procedure because the Sunday before i couldn’t swallow food or water and I kept throwing up. Tomorrow I’m having my 5th procedure. Has anyone else had this experience after an esophagectomy? Is there any other way to keep the esophagus open without these procedures which are repeated assaults on my body?

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esowarrior | @esowarrior | Oct 18 6:59am
In reply to @earle "@esowarrior Thanks! The 7 years part is very encouraging. Mine was confined to the esophagus, with..." + (show)
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@esowarrior Thanks! The 7 years part is very encouraging. Mine was confined to the esophagus, with no regional or distant nodes positive. There was one "suspicious" node which turned out negative. They (MD Anderson) then restaged me to II, instead of III. I had proton, which is a little kinder to surrounding tissue, but, in addition to the scar tissue issue, I have a mild mitral murmur, which my cardiologist said was of no consequence. As I've posted before, I'm now 17 months NED. I declined surgery because of age (87 in two months) and my now deceased ex-wife also had esophageal cancer (hers was adeno at the junction) and I watched her having the post-surgery side effects. Also, the studies seemed to indicate not a lot of difference in OS between surgery and chemoradiation alone. I have had one additional incident. I formed a very small nodule (.8mm) in my upper left lung lobe, in a spot which couldn't be biopsied. All the oncologists agreed it wasn't metastasis, but that it needed treatment. So I had SBRT (very intense, extremely narrow beam radiation) for five sessions and it responded, leaving a small amount of scar tissue. Unfortunately, I developed pneumonitis, as about 40% do, but that's another story...

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@earle. Wow you are amazing at 87! I went through all that at 62.

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earle | @earle | Oct 19 9:09am
In reply to @esowarrior "@earle. Wow you are amazing at 87! I went through all that at 62." + (show)
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@earle. Wow you are amazing at 87! I went through all that at 62.

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@esowarrior This is the current version of me... 🙂
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Colleen Young, Connect Director | @colleenyoung | Oct 22 7:48pm
In reply to @marycherry "@v132077 I hope you see this! I’m very interested in learning more on the self stretching...." + (show)
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@v132077 I hope you see this! I’m very interested in learning more on the self stretching. I just had another stretch 2 weeks ago, and choking happened again just a bit ago!

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@marycherry, did you see @v132077's reply to you here? https://connect.mayoclinic.org/comment/1690907/

How are you doing with the choking? Has is subsided?

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earle | @earle | Oct 23 9:07am

After reviewing my report from my last dilation, I feel a little more encouraged. I was dilated to 18mm at MD Anderson on 8/6. My hometown GE doc was able to start with a 15mm-18.5mm balloon to begin with on 10/15. I think he told my wife the actual diameter was 16mm, which is in the normal range. This tells me that I can stretch the dilation intervals out some, if I only got 2mm constriction in two months. IDK about others, but I think I'm a little hypersensitive to the tightness feeling. I essentially replaced tumor tissue with scar tissue, which is full of C-type nerve tissue, which lacks myelin and is even more sensitive to pain than normal nerve tissue. IOW, I may have been getting a false constriction signal. That's valuable knowledge...

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earle | @earle | Oct 23 9:22am
In reply to @earle "After reviewing my report from my last dilation, I feel a little more encouraged. I was..." + (show)
Profile picture for earle @earle

After reviewing my report from my last dilation, I feel a little more encouraged. I was dilated to 18mm at MD Anderson on 8/6. My hometown GE doc was able to start with a 15mm-18.5mm balloon to begin with on 10/15. I think he told my wife the actual diameter was 16mm, which is in the normal range. This tells me that I can stretch the dilation intervals out some, if I only got 2mm constriction in two months. IDK about others, but I think I'm a little hypersensitive to the tightness feeling. I essentially replaced tumor tissue with scar tissue, which is full of C-type nerve tissue, which lacks myelin and is even more sensitive to pain than normal nerve tissue. IOW, I may have been getting a false constriction signal. That's valuable knowledge...

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@earle Edit: a shout-out to my local team. Down at MDA, I asked the GE doc I was assigned to (it's never the same one, so I don't have a GE doc who's "mine.") to please note the diameter of the esophagus. He didn't. Locally, I got a sheet of nine views, starting at the top and going all the way to the bottom of the duodenum. The reverse side of the sheet is full. Most of it is, of course, precautions on diet, driving, etc. But, it also includes exactly the size balloon he began with and the maximum size he ended with (18mm). That's one place MDA could learn something...

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