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Eating Problems 6 years post esophagectomy
After a stage 4 esophageal cancer diagnosis, followed by chemo, radiation, and surgery I am 6 years cancer free. I am unable to eat normally, both due to the reduced stomach size and due to a restricted esophagus diameter due to scar tissue from the surgery. Numerous dilations have not been successful is maintaining a larger esophagus diameter. During eating I regularly have a series of symptoms that have confused my doctors for years and have not been reduced. I become severely congested, start repetitive sneezing and sometimes hiccuping. My surgeon thinks maybe the vagus nerve was damaged during the surgery, but has no solution. He did recommend mint tea to relax the throat but that has not helped. Anyone have any similar experience?
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I had post surgery issues with a narrow esophagus also. After numerous dilations and stents, I started self dilation on a daily basis. It has worked wonders and has been a life changer. I can eat anything I want to and as much as I want to.
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1 ReactionWhat is self dilation!?
Self dilation in laymen’s terms is manually stretching your esophagus. I use a 48FR (16MM) dilator and insert it approximately 20 inches into my esophagus. I do it daily and have been doing it for a little over 2 years. Takes about 2 minutes from start to finish. It’s not as bad as it sounds. Anyone could do it. Like anything there is risk involved but it is so minimal I don’t dwell on it. Of the couple hundred people I know who do this also, not a single one of us has had any issues.
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1 ReactionThank you! I found some Youtube videos on this just now. Had no idea! I too have tried stents which were unsuccessful and very uncomfortable. Did you need to go to Mayo or are there many places to be evaluated for this option?
Yes. The stents are uncomfortable, and they will move. I had several migrate into my stomach. I passed one and didn’t know it. I went to Mayo in Phoenix. My GI doctor in Ft. Wayne was very familiar with it but the hospital he was associated with could not provide the dilator. If you decide to move forward with Mayo in Phoenix contact Dr. Allon Kahn. He is the director and an outstanding doctor and just a great person all around.
This is all very helpful! Thank you!
You mentioned the hundreds of people who do self dilation. Is there a support group of those who do?
I have met most of the patients who self dilate through my doctors (Oncologist,GI, etc). There are people who have issues not caused by cancer that choose to self dilate. I have participated in other support groups outside of Mayo also. A fellow cancer patient from NC whom I met through a support group got me interested in it. He was Stage 4 and treatments were not an option for him so he was self dilating daily to be able to eat and maintain his weight. I immediately talked with my GI doctor about this and he told me I was a good candidate for it. He put me in touch with some doctors he had worked with at Mayo. The rest is history.
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1 ReactionHere's a blog post and video explaining self dilation therapy with Mayo Clinic gastroenterologist, Dr. Magnus Halland, M.D.
- Esophageal Self Dilation Therapy: An Effective Alternative
https://connect.mayoclinic.org/blog/gastroenterology-and-gi-surgery/newsfeed-post/esophageal-self-dilation-therapy-an-effective-alternative/
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1 ReactionDr. Halland nailed it. That’s exactly what is involved in self dilation. I’ve attached a video given to me by Dr. Kahn with Mayo in Phoenix. After watching this I was absolutely certain I could do it, and have been for a little over two years now.
https://www.mayoclinic.org/patient-education/?VID=VID-20097823
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