I am hoping to hear from people who have had multiple esophageal dilations. How many dilations did you have? Have the dilations stayed effective over an extended period of time?

It is a decision we may have to make when we go see the gastroenterologist. I really need to know more about this. If you prefer to pm me, please feel free.

Hi Gloria - Though I am a few months behind your husband for treatment and have only had one dilation, I wanted to let you know that the one treatment did help me (so far). My swallow test in May indicated 2 strictures in my esphogaus so we schedule a dilation. By the time I went in for the procedure, I could no longer swallow anything at all, not a drop; my guess is that the strictures bonded together to form a blockage. Before the procedure my ENT said if they were not successful with breaching the esphogaus, then we could talk about doing a 2nd attempt with one tube going down my throat and another going up from my stomach. That sounded similiar to the what Michael King described in his earlier posts. Perhaps he might be able to answer some of your questions or give an update.

I am scheduled for a 2nd dilation next week as the doctor didn't want to be too aggressive when he did break through the band of scar tissue. I am able to swallow liquids with little discomfort and some soft foods with some pain. I have been having more mucous these past few days so I don't know if the tissue is trying to close again or if it's healing in a more open manner, so Monday's procedure may give some insight.

This may not be much help, but I am happy to answer any questions.

Best,

Gloria, I've had maybe 6-8 of them over perhaps a 2 year period. I'm sure each of us is different in our needs and reactions to treatment, so I doubt there are any hard and fast rules. I also had a web growing across my esophagus on the first two occasions, which was scary. I'll be interested to read about others' experiences. I seem to remember reading that some folks have had quite a few more than I.

If your husband needs one, or more than one, don't be shy about getting them done. With anesthesia they're not generally a big deal. A sore throat for a few days but it's worth it for the relief from restriction.

Keep us posted.

Thanks, David. It is good to hear from people who have had the procedure. We are still waiting to get an appointment to see the gastroenterologist. I will, for sure, post about what happens.

I just had my first dilation. Going into it my doc told me I may have to dilate more than once. It was no big deal. General anesthesia and I noticed a difference in my swallowing right away. Just mild sore throat for a couple days afterwards.

I had my 2nd dilation yesterday and it went just about the same as last week. My SO/ENT didn't see as much thickening so that's a good thing. He did tell my husband (post surgery) that he was happy with the way it went, glad he decided to do it in 2 separate procedures and not all at once, and that he was able to stretch my esophagus to a wider width (no sure size). I am a definitely more sore than I was after the first one, but guessing that's to be expected since he did more stretching. Doctor said it would be painful for a few days, so I'll keep him advised if it doesn't get better toward the end of the week. Also, the anesthesiologist notes said she had some difficulty opening my mouth wide - something that the one from last week didn't note - maybe the first one should have been on the team for the 2nd procedure.

Time will tell its full effectiveness. Still on soft foods and lookong to reduce the number of Jevity cans so I can hopefully get off the PEG. All we can do is try and adjust as we go along.

Thanks all,

Thanks for the update Nancy. I hope the soreness goes away for you soon and that you can start eating real food soon.

As for us, I called the RO's office today and it seemed that the referral is kind of in limbo because our nurse/case manager was away when we saw the doctor last. When I spoke to her today, the nurse had no clue what our discussion with the RO was and which doctor we were being referred to. Anyway,she promised she would try to sort it out for us. I am so very glad that I called today.

Yes, Gloria - a good thing you called. It is frustrating to run into glitches like that; no way you would have known if you weren't on top of everything. Managing one's health and a major illness is a full time job!

Hi Everyone,
I'm back here, finally, now my husband has completed TX (May 11). So much has happened, I would have to start about 6 or so subject lines! I've been reading posts to help get through this and it's certainly helped, especially while Jack was in hospital. A big thanks to all! So... my love just heard from ENT doc that he has to have this Esophagus Dilation. He has not been able to swallow anything but ice chips since end of TX. 7 weeks already! He is extremely frustrated and worried. Doc is going to get him in asap. We see RO for follow up July 8 and surgeon for follow up Aug 6 with PetCT Scan same day and hopefully, crossing all fingers and toes, peg and port removed on Aug 8. That's if he can eat or at least drink liquids!
Lots of mucositis (can't spell it) which is NASTY. How long does that go on for? Anyway, I presume this Dilation thingy is an outpatient procedure and quite straight forward, yes? With everything we've been through I'm getting anxious again.
Thanks.

Each of us can react differently so always keep that in mind whatever we tell you.

Read this www.oralcancerfoundation.org/treatment/mucositis.html re mucositis.

I personally recovered fairly quick and was eating solids by the end of my 3rd week post Tx.

I don't think his docs will remove the PEG until he can eat solids.

Can't talk about the dilation because I never had to have one.