Tami, That last question gets right at why I ended up with a completely closed area of stricture too. It was closed in July when I had surgery but back last Christmas I was swallowing enough that there was way more room there I think. The reason it took so long for me is on the first barium swallow I had done locally (last November), the radiologist looking at it and the speech pathologist both MISSED the three areas of stricture (they were painly visible--another speech pathologist pointed them out to me later). If they had caught it then (last November)I could have had a dilation, not the much more complicated surgery I had. On the other hand, I also was not nearly as healed otherwise from radiation at that point and there may have been some issues with that.

I assume your Mom was the same--she was eating stuff with some difficulty before she became completely closed up? I think for some people (liek me) it gets worse gradually but for others the esophagus can become completely closed right after radiation....

Yes Nelie
Same situation.....
my Mom finished tx in august and was eating soft food/liquids in September. The dysphagia progressively had gotten worse through the months leading up to the diagnosis of full aspiration in April. The swallow test in the fall showed she had great swallowing ability. She complained of it getting worse and her ent put off doing anything about it until April. Then he did another swallow test and sent her to a Speech pathologist. Since then she has switched ent's because the first never got back to her or followed up with her ever since finding out she was aspirating on everything. To this day he still has not called. I don't even think he knows she switched doctors. His lack of concern or follow up really infuriates me. If he was more proactive in the early stages of this it could possibly have been prevented from becoming a full closed stricture.

Nelie-where was your stricture? Was it near the voice box? I am surprised in this day and age they have not made any advancements with the voice box technology.

Tami

Tammy, I think mine was above the voice box--I know it was high in the esophagus. But I can't be more precise than that.

Nelie

Nelie
I was in touch with a doctor out of Boston who is willing to look at moms records and possibly consider a procedure similar to yours if the closure is not too long vertically. He said it comes with a lot of risks and no guarantees that the opening will stay open. I am just wondering how your doing with it so far. I tried sending you a pm but it did not go through-your box is full. I wanted to see if it was the same doctor that you had.
Thanks
Tami

Nelie
I was in touch with a doctor out of Boston who is willing to look at moms records and possibly consider a procedure similar to yours if the closure is not too long vertically. He said it comes with a lot of risks and no guarantees that the opening will stay open. I am just wondering how your doing with it so far. I tried sending you a pm but it did not go through-your box is full. I wanted to see if it was the same doctor that you had.
Thanks
Tami

Tami, I cleaned out some messages in my private messages so you shouldn't have that problem again. Also, sent you a pm.

I still have the stent in my throat and will see the docs in Boston on Monday to talk about when it gets taken out and what I can expect after. Right now I'm doing pretty well with it although the surgery where they opened my esophagus and perforated it (followed by a collapsed lung and insertion of a chest tube in the recovery room) and then the stent surgery really had me hurting and exhuasted for several weeks following it. I seem to have gotten my strenght back and although the stent sometimes caused discomfort, it is managable.

They said it had to be in at least 8 weeks but I'm going to ask if it can stay in longer, partly because mid-October (which would be about 12 weeks) would be a better time in my work schedule to have more surgery but partly because the thoracic surgeon suggested that as long as it's in, my throat won't close up again, and that could be a good thing.

As for my swallowing, I am able to swallow (liquids) again but I feel like I'm taking big gulps and am taking small sips and am still not anywhere near swalowing enough volume to get off the PEG. But it's progress.

Nelie