Because of radiation effects, I had to have three dilations of my esophagus within the first 2 mos post TX. Now, at 7 mos post TX, I need some more dilations because the stricture is back. My esophagus tore in a few places during the last dilation and it was very painful for several days after the procedure. I am afraid that it might happen again this time. I am looking for others who have had esophageal dilations due to radiation effects and what your experiences have been.

I have had quite a few over the years for barretts but none as yet from rads. I usually hurt but it's from biopsies they take when checking out my esophagus from the Barretts. It lasts a few days and then eases up. I waa getting them every 3 months until this OC got me.

I'm having them every 4 months or so. I've told my story elsewhere here about the first surgery I had which was to open a total stricture--I had a bad perforation. Since then I am just pretty sore afterwards for 4 days or so. You will have healed overall from the rad much more than you were healed for your first dilitations so I would think it would be much less painful and less liklihood of a tear.

Good luck.

Nelie

Nelie,

Did they attempt to actually remove your stricture the first time or to open it- e.g., break through it and stretch? I know some people just need stretching but others have actual scar tissue barriers? Was this via an endoscopy? My husband seems to have a situation with many parallels to yours so your postings have been very helpful.

Sophie, They actually cut through scar tissue as well as dilating it. Becuase it was a complete stricture, or nearly complete, by the time I had surgery, they couldn't just slide something down my esophagus and stretvh the esoph. open. One doctor (the ENT/surgeon) used a tool that went down through the esophagus and then they pulled out my g-tube and the other doctor (the thoracic surgeon) went up the esophgus through the stomach, both of them cutting scar tissue until the esoph. was open. I am told there aren't many teams of docs that have much experience doing this procedure so choose your doctors carefully-especially if his stricture is nearly complete, not just a narrowing.

Obviously this has some risks and in this case they either accidentally cut the esoph. itself or when they dilated it they caused a big tear. They had done over 50 of these surgeries and I was the first one this happened with (and by now they are probably close to 100 of these surgeries and I was recently told I still have the distinction of being the only one)so that isn't likely if your husband ends up having surgery like this. But try to find docs who have done as many of these surgeries as possible. They also put something on the part they cut open that prevents new scar tissue from forming.

Hope this helps.

Nelie

Nelie - After you had this procedure/surgery done, was there a dramatic improvement in your ability to swallow more normally? What is the good and bad of having this done? Any and all info is appreciated since this is the area that I need help most.Although I have been EXTREMELY fortunate so far and eat whatever I want,I can tell it's a matter of time before I have to have something done.

Nelie,

Thanks for the info. I haven't yet seen my husband's write up of his swallowing test and my husband talked with the ENT so I'm not even sure of all the issues uncovered by the test. We He's having the procedure done by a highly regarded ENT surgeon at Hopkins- same one that did Minnie's recent surgery. I know that his surgeon wanted to make sure that the manner in which he did the procedure did not cause more scar tissue to grow back. I'll post when I know more and let everyone know how it goes and whether it helps. He did say he might need to repeat the procedure at least one time.

As for whether there was a dramatic improvement in my swallowing ability. When I had the first big surgery that was not just a dilation but cutting open a complete stricture--yes, I'd say it was dramatic because before the surgery I couldn't swallow anything. Not water. Not my own saliva. A month before the surgery I gave part of a presentation at a national conference and had to stop to spit at one point. I had to to do that all the time. It was very embarrassing and obviously since I was so blocked up I was totally dependent on my gtube for nutrition. At the conference I mentioned, I had to ask for a place to feed myself during the lunch hour--I couldn't just bring an Ensure or a Boost and drink it.

After the surgery--I could swallow stuff but when I had the perforation right after they didn't want me swallowing anything-not even my saliva-because what I swallowed was leaking out of the esoph. into the chest cavity and that can cause a very nasty (potentially fatal) infection. Four or five days later they put a stent in my esophagus to cover the place where there was a performation and then temporarily I could swallow liquids and things like yogurt but was still having problems with anything more solid. Then a stricture started growing at the top of the stent so by the time I got that out (6 months later) I was hardly swallowing anything again and they had to do more cutting to remove the new stricture.

Since then I've been having dilitations on average every 3 months or so but still am pretty much unable to swallow even soft food that is not smooth (I am restricted to things such as yogurt, mashed potatoes or creamy soup). I am told the problem is now probably not the width of my esophagus so much as that my epiglottis doesn't completely close over my trachea when I swallow. I have apparently learned how to push liquids and smooth/mushy things like yogurt past the open area by the pressure with which I swallow and double-swallowing. But bits of stuff that are heavier go down the wrong way or get caught on the epiglottis.

I still have not given up trying to learn a way to get more stuff down though since giving up definitely means I am stuck at this level forever.

Sophie, I wish your husband the best of luck with this. I have had the worst of luck and I don't want to scare anyone by posting about this because all the factors I have had to deal with in combination are not so likely in combination. I joke that I'm one in a million!

Still, if I can be of support to someone else because of my experience at least that is something!

Nelie

Hi I just had my fifth esophogeal dilation. The last one helped but then after a few months the throat shrinks because of the scar tissue which causes the narrowing Most ents will not remove scar tissue it is suppose to soften but that does not always happen I just had it done last friday it feels better I can breathe alot better. Thanks to oxycodone I can get rid of the soreness quicker I just don"t like being doped up. I have trismus to the therabite has helped. I cannot stick my tongue out all the way. I do not know if I will every be able to eat normally again my doctor said I will never be back to normal. I know some people get their throats dilated once a month. I really do not want that I hope this time my throat stays open no more narrowing I know that the dilations can also cause scar tissue. I know it stinks to have this but there is nothing else to do he says my esophogas is fine I just have alot of scar tissue. I know you have had a hard time with your recovery you are lucky to have a good caregiver. I am putting my trust in the lord to heal my throat.

God Bless
Katrina

HI again my treatments ended in 10/06. Write me anytime
good luck
Katrina