After three years on a PEG, my husband is looking for some improvement in quality of life. So many doctors just say that nothing can be done. The PEG is due to stricture in the larynx. Can anyone offer suggestions?

Gerry,
Try posting this under 'PEG issues.' Surely there are others in similar situations. Godspeed.

Gerry, Is your husband's stricture a complete stricture? Do they know how long it is? I had a stricture that was complete, by the time of surgery, removed surgically about a year and 1/2 ago. I had been using the PEG for over a year then. Since then I have slowly regained some swallowing function. Although it is not (yet) what I had hoped, my quality of life is far better than when I had a complete stricture. I can go out and eat (a limited range of things) with my spouse.

If doctors are discoutraging your husband because they don't think the stricture can be oeprated on, I think you should get another opinion. There are probably docs at Sloan Kettering that do the same surgery I had at Brigham and Womens/Dana Farber in Boston but if you want I'll give you the names of my docs in Boston. I don't know where you are in New Jersey--I am in upstate NY and drive 6 hours one way to get there but they have a lot of expertise in this surgery that I think not many docs have.

There are also exercises he can be doing to strengthen his muscles that may have atrophied from not swallowing--one is called the Shaker exercise--he could start doing that now. There are others too. Has he been seen by a speech pathologist who has some experience treating people with swallowing disorders?

There is a lot of misunderstanding about swallowing problems after radiation and a lot is not known because after all we're a small group of folks who get these problems and there's not a lot fo formal research but I strongly synmpathize with your husband and I thinkit is at least possible there is hope he could get that stricture operated on.

Nelie

Gerry I sent you a PM with the names of the docs and some other info.

I, thanks, I just saw your message. The stricture is in the larynx and esophagus. It is not total because they were able to get a wire in to dilate. However, the dilation only made matters worse.
I am looking into some doctors at Kettering in NY. I will check out the names you gave in the PM. Perhaps we can continue to talk that way. Thank you so much!!

Gerry, I do think I remember when the surgeons who removed my stricture were first examining me that they did say there could be problems doing surgery if the stricture was around the larynx (which fortunately mine was not). I still think it's worth trying to get a second opinion.

Come here and post any time or if your husband is willing I will talk directly to him via PM here. It can be a really hard thing psychologically dealing with this. Although I think I have mostly managed to avoid depression myself, I have definitely have my moments and sometimes it's a knife's edge I walk on keeping depression and sadness at bay over this. Knowing one is not alone, all by itself, can sometimes help.

This particular forum is for those of us suffering from long term effects of treatment and this is certainly one of the hardest so he is welcome here, even if recent posts by people who haven't suffered from these long term effects may make it appear otherwise.

Nelie