My Mother had a procedure done today after being on a Peg for over a year and aspirating on 100% of everything she swallows. They originally thought the problem was her cricopharnegeus muscle based on her swallow tests. The ENT had to put her out and scope her because he could not get down her throat enough to see the problem due to her damage for TX. Today he put her out and still could not get down because her throat at the esophogaus is completely closed due to all of the damage from her treatment. The scarring and ahdesions are closing off the entire opening. He is looking to refer her to a specialist who can reconstruct her esophogaus by using some tissue from her stomach. Has anyone ever experienced this or heard of it?
Tami
PS the good news is there was no tumors down there!

Tami,
My neighbors daughter had esphogeal cancer and they replaced the entire esophogus with a reconstruction from her stomach. It eas truly a miraculous surgery as esophogeal cancer is a very tough one to beat. She has to eat frequent smaller meals as a result of the reduction of her stomach. It doesn't sound as if your mothers reconstruction would be as radical as that.

Thanks Gary for the positive feedback....they had also said they would use her stomach to rebuild the esophagus. Since my first post I have gotten a contact of a surgeon at MD Anderson and it appears it will be done there with a gastro surgeon and and HN surgeon. It just surprises me that this area is in such bad condition from the tx when it was not the primary site of IMRT-BOT is where the tumor was. I had thought that IMRT was supposed to be accurate in it's aiming and was less likely to create problems outside the target area.
Thanks
Tami

Tami,

My husband's esophagus is also closed because of a complete stricture caused by radiation. Go to the topic in "After Treatment Issues" called "Dilation of the Esophagus". There may be a procedure to help open the esophagus without doing a total esophageal ressection. My husband also had a failed dilation. We are looking at a new procedure where they go up through the PEG tube and puncture the stricture and then dilate. You will see postings under the "Dilation of the Esophagus" site. This might be worth checking into before trying the total ressection.

Joni

Thanks Joni-
the ent told her that she would not be eligible for a dialation since it is completely closed they can get anything down there to dialate it. But he may not be aware of the procedure you are mentioning. Hopefully they will have various options at MD Anderson including the one you had mentioned. I had read what Nelie had done in Boston but I did not think she had complete closure in the food pipe. So is your husband eligible for this procedure with a complete closure? My Moms throat is stuck together with adhesions....is that what your husband also has? Where do they perform the procedure you are investigating?

Yesterday she had bouts of naseau from the gasses and drugs used on her the day before to scope the area. I am just wondering what would happend if she vomited and her throat is completely closed?

Thanks for your reply
Tami

Tami,

My husband's ENT also told him he could not be dilated. We have an appointment at the Univ of Chicago on the 24th. The head and neck surgeon there has much success. Hopefully, surgery will come after. Many patients were told the same thing as you and I and are now eating. Memorial Sloan Kettering is very good at this procedure. Any head and neck surgeon at a large head and neck cancer facility should be more familiar with this than a local ENT. Please don't give up easily on opening the esophagus before going for the more radical and invasive ressection.

Joni

Tami, I did have complete closure by the time they did the surgery. This surgery can be done although with a complete closure, at least in Boston, although my impression is it is more risky (there's more chance of performation of the esophagus) and there are less surgeons willing to do it if the area that is closed is over a very long area of the esophagus. If they are doing the reconstruction you are talkiung about, they may try to open the area first anyway, I really don't know. I know the thoracic surgeon I saw there also does those kind of reconstructions. Best of luck with this.

Nelie

thanks Nelie and Joni-I will share this with my Mom.
Best wishes
Tami

Mom is on her way back from MD Anderson. They did their own evaluation of her swallowing problems and has confirmed that she does have a solid stricture. No opening-not even an air bubble. The location of the stricture is next to her voice box. Therefore a reconstruction is even more complicated than originally thought. To do the surgery they would have to remove her voice box. She could have an artifical voice box put in and would need to re-learn how to talk with it. Obviously she is very disapointed. At this time she is feeling she would rather live the rest of her life with a peg than to have her voice box removed for the sake of eating or drinking.

So I am looking to see if anyone here has had an experience similar to this prognosis. Also is there any reason to seek addittional opinions. Obviously MD Anderson is supposed to be one of the best in the world. So is it safe to assume their options are the only valid ones?

MD Anderson also is going to have her feeding tube replaced with one with out tubing and works more like a button. This should make life easier for her. Has anyone else ever had one of these put in?

My final question is......if her local md was on top of this progressive swallowing problem wouldnt' they have been able to do something (besides sending her to a speech therapist) to intervene before the stricture was completely closed? Obviously it did not happen over nite...if they were more proactive couldn't they have done dialations before it got to this point?


Any feed back would be appreciated.
Tami

Tami, That last question egst right at why I ended up with a completely closed area of strciture 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. If they ahd caught it then I could have had a dilation, not the much more complicated surgery I had.

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....

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