Plummer Vinson Syndrome

Posted by kaforester3 @kaforester3, Dec 10, 2020

Has anyone ever been diagnosed with this? I also have esophageal webs and they have to do an EGD every 3-4 months to stretch my esophagus so that I can swallow food and drink again. It’s gotten so bad that I have to drink Ensures to keep my weight up.
I had to go all the way to MN to the Mayo Clinic to get some real answers and now I have two GI doctors in KS. One does my esophagus problem and the other does my intestines for Crohn’s disease.

Interested in more discussions like this? Go to the Digestive Health Support Group.

Amanda Burnett | @amandaa | Dec 10, 2020

Hi @kaforester3, I tagged some other members that have esophageal disorders. @dandl48, @riflemanz64, @contentandwell, and @pdilly. I myself was unaware of Plummer Vinson Syndrome. That sounds quiet painful and daunting.
@kaforester3, has your Mayo physician suggested anything long term to help?

pdilly | @pdilly | Dec 10, 2020

@kaforester3 bless your heart! I don’t have that condition and this is the first time I’ve ever heard of it! I hope someone who has it responds here. It helps so much to hear from other people who understand what you’re going through!

kaforester3 | @kaforester3 | Dec 11, 2020

In reply to @amandaa "Hi @kaforester3, I tagged some other members that have esophageal disorders. @dandl48, @riflemanz64, @contentandwell, and @pdilly...." + (show)

No. They said I’ll probably need it stretched every couple of months for the rest of my life.

JK | @contentandwell | Dec 12, 2020

Hi, @kaforester3 @amandaburnett flagged me for this discussion because I have had esophageal problems also, but my problem, “Barrett’s Esophagus” has not been nearly as troublesome as yours.

The main symptom I had was hoarseness but per my most recent endoscopy I am in remission.

I’m sorry that I can’t help, but I had never heard of Plummer Vinson Syndrome before. I hope you can get some more help for it than what you are currently getting, but if you’ve been to Mayo I suspect that your treatment of frequent EGDs may be the best option for you. Hopefully something will come along that will be a better option.
JK

Amanda Burnett | @amandaa | Dec 21, 2020

@kaforester3 I wanted to follow up with you throughout this holiday season. Have you received more news about your condition or any helpful advice or avenues that you can share? When diagnoses arise on Connect that are rare, it is welcoming to get your feedback and the journey you are experiencing for future members and so you may be connected with others if anyone joins that have similar problems.

Teresa, Volunteer Mentor | @hopeful33250 | Oct 8, 2021

In reply to @kaforester3 "No. They said I’ll probably need it stretched every couple of months for the rest of..." + (show)

Hello @kaforester3
You posted a while back regarding a rare disorder, Plummer Vinson Syndrome.

I was wondering how you were doing. Could you post an update?

Teresa, Volunteer Mentor | @hopeful33250 | Oct 13, 2022

In reply to @kaforester3 "No. They said I’ll probably need it stretched every couple of months for the rest of..." + (show)

@kaforester3

It's been a while since you last posted an update. I hope that you are doing better. Are the procedures for stretching the esophagus still helping you?