Joni, I'm delighted you found someone closer. Yes, followup is a hassle when you're seeing a Dr. that's far away.

One thing I would definitely ask any doctor is how many times the doctor has done this surgery and how many times they have perforated the esophagus. The rate should be low (2-3%) but, speaking from experience, you also want to know what safeguards they have in palce when that does happen.

For example, it seems from what people have posted here that many surgical teams that do this are ENTs paired with gastrointestinal docs--which makes sense in some ways because the PEG tibe gets pulled and replaced when they have to cut through from both directions. But it is thoracic surgeons that have the training to deal with damage to the esphagus, if it happens during surgery (and make no mistake, if it does happen it is really serious and can have some life-threatening consequences is not treated right). I think there is also more of a risk of damage when th4e stricture is large.

They should at least be able to tell you that they have a thoracic surgeon available to step in quickly should the worst case happen.

Signed--the worst case

Nelie,

Thank you for sharing the information about what to ask the doctor and also about the precautions. We heard today from a head and neck surgeon/oncologist from University of Chicago. She says she has success with complete strictures. We don't know yet how many she has performed, what procedure she uses, success rate or anything else. We will be making an appointment soon to talk with her in more detail. Are you doing ok? I imagine you are still in quite a bit of pain from the stent and tear in the esaphagus. Hang in there and keep us informed.

Joni

Hi Joni, I hope you manage to get in to see her soon.

I'm doing better, thanks. The stent is bothering me and may continue to do so until they remove it. But I'm down to taking hydrocodone (codiene and tylenol) from taking Oxycontin and Tylenol and I seem to be getting strength back. The intense pain I had around my chest from the chest tube and collapsed lung seems to have mostly gone away.

Nelie

This message is for Vin. Vin, did you ever find out why your wife suffered nausea and vomiting after the dilation of her esophagus? My husband had his esophagus dilated 7/10/06 and he has suffered serious episodes of nausea and vomiting since 7/16. It is now 8/8/06 and it still continues. We have been shuffled back and forth between his GI and Internist. His GI doctors insists that the dilation did not cause the nausea and vomiting. My husband is suffering from thrush and the GI feels that might be the cause. We went to the ER the other day. They do not know why he is experiencing these symptoms. he does not have a blockage via the X-ray that they took. They did discover that he has an infection in his trachea. So the new med he is on also causes thrush so there does not seem to be an end to his suffering. Do you or anyone else have any words of wisdom? We do have an appointment with Shands GI clinic for a second opinion the end of August. I just hope my husband has the strength to go. Thanks, Eileen

I'm not Vin but...Thrush can definitely cause nausea and vomiting (speaking from experience). If he is on an antibiotic, those can too. Also, the medicine that you're given to CURE thrush can make you nauseated (also speaking from experience). In other words, there may be no relief from the nausea in sight until he gets the thrush really under control and has taken the last of his medicine. Sorry. This is just my experience.

Nelie

Eileen,

Since then my wife has had two additional dilations. Again, as usual, she got violently ill with nausea and vomiting. So as usual after the 7th and 8th dilation we spent three days in the CCC so that she could get hydration and anti-nausea medication. She did not have thrush or any mouth infections.

I have asked the GI doctor performing the dilations why the nausea occurs. I did not really get an answer but he prescribed Tygan as a remedy. Tygan was dispensed in "horse" size pill which she could not swallow. We did try Zofran but it did not seem to help.

Anyway, we though that the nausea could be related to the anesthetics given for the procedure. So we asked the anestisiologist to try something different but the end result was the same. So we still do not know why the nausea occurs.

I thought I would post this update here. I went back for a 4 week check-up with the docs in Boston who cut through my esophageal stricture, dilated the esophagus, and then ended up putting a stent in because there was a tear or perforation. Thye said all looks good in terms of the stent staying in and my lungs looking good (after the collapsed lung).

The big surprise was that the thoracic surgeon said, if the stent isn't causing too much discomfort, I can keep it in for a year and then when they take it out it's likely I won't have to have lots of dilations after that--that the stent being in that long will sort of train the esophagus to stay open insted of thightening back up. I have mixed feelings about this as I am having daily discomfort and pain from the stent, but it isn't horrendous pain that I need prescription meds for and I'm not thrilled about the possibility of having to return for dilations every month either .

Any thoughts on this are welcome (or experiecne with this? I seem to be in relatively uncharted territory)

Nelie

Wow guys...that is really tough. I went for 2 or 3 esophageal dilations and had no problems, no discomfort, no nausea and, best of all, the procedure worked and I have not had one in a couple of years.
Nelie, I wish that I had advice to give. Best of luck dealing with it.

Take care,
Danny G.

Back with an update. Last summer I had a stent put in my esophagus after an attempt to unblock a complete stricture, and dilate the esophagus ended in a perforation. The surgeon who put in the stent wanted me to keep it in a year because he thought that would prevent the need for additional dilations. However, starting around October, it got harder and harder to swallow anything. My local ENT scoped me at the end of November and said he thought there was a strciture that ahd grown across the top of the stent (the one place in my throat where a stricture COULD grow with the stent in!) so I went to have the stent removed a week and 1/2 ago. There was indeed a stricture that had grown over it and there was some leeding from removing it, but he also dilated my esophagus even more than it was last summer.

And for the first time sicne radiation (over a year and 1/2 ago), at least with liquids, I feel like I can really swallow again! I mean, normal size gulps. I can actually gulp down water when my thorat feels dry without choking. It's great. I still have a long ways to go--I've only just begun exerimenting with non-liquids (my throat was sore right afetr surgery and it seemed wise to jst stick to water and broth for swallowing work to let it heal). Tonight I tried isntant mashed potatoes with some extra butter and it felt like sand going down my throat. And any liquid with any acid in it (like this berry smoothie stuff I was pouring down my tube) also irittates both my mouth and throat.

I'm hoping this is just a matter of gradually toughening up my mouth again. Its been a long long time since I've swallowed much.

The other problem may be something that just requires more swallowing practice or it may be really intractible and that is that any little solid bits of things I seem to have a prpoblem swallowing still-even using water to help wash them down. I was told a year ago I have a shortened epiglottis and it also isn't moving all the way down when I swallow so stuff kind of gets stuck on it. Also the back of my mouth is really dry and the tissue is not nice and smooth and stuff just gets caught there.

I'm hoping these are also things that, with time and work, I can improve and learn to work around. But even if I can just swallow smooth liquids that means I can eventually get off the PEG as longas I can swallow enough of them, which it now appears I can.

The thoracic surgeon said 6 months with the stent might be enough to keep my throat from wanting to close up again so maybe I won't even have to go back for more dilations but if I do, I do. I'm finally FINALLY seeing some light at the end of the tunnel!

Nelie

Nelie,

That's great news! I know what a long ordeal this has been, but it's wonderful that you're seeing some noticeable improvement. I hope this is a sign of better things to come.

Cathy