Esophagus will not stay open...suggestions?

dwhite0002
dwhite0002 Member Posts: 126 Member
edited March 2014 in Esophageal Cancer #1
I am a 4 year EC survivor. I had chemo/radiation followed by an esophagectomy in Dec. 2006. I have done well overall, but have been having great difficulties keeping my throat open, lately. I have a bougie dilator at home but cannot get it through both strictures.

My endo. doctor is frustrated, and I am frustrated with him. I feel tension from him when I have had to be dilated (twice in the past 5 weeks).

He has mentioned seeing a surgeon, but the surgeon says "you do not want me to cut again unless is is dire."

I am getting a j-tube place again dude to my weight in a few weeks.I am 36 years old and the thinnest I have been through this battle (6'4'' 144 lbs now).

ANY suggestions?

Comments

  • Unknown
    Unknown
    #2
    This comment has been removed by the Moderator
  • dwhite0002
    dwhite0002 Member Posts: 126 Member
    #3
    unknown said:

    This comment has been removed by the Moderator

    They did try some sort of
    They did try some sort of steriods, initially. I have had stents, as well. The steriods did not help and the stents don't stay in...this is why I am so frustrated!

    My anastamosis has two strictures and the cause for closing up is scar tissue.
  • Unknown
    Unknown
    #4
    dwhite0002 said:

    They did try some sort of
    They did try some sort of steriods, initially. I have had stents, as well. The steriods did not help and the stents don't stay in...this is why I am so frustrated!

    My anastamosis has two strictures and the cause for closing up is scar tissue.

    This comment has been removed by the Moderator
  • Tina Blondek
    Tina Blondek Member Posts: 1,500 Member
    #5
    dwhite0002 said:

    They did try some sort of
    They did try some sort of steriods, initially. I have had stents, as well. The steriods did not help and the stents don't stay in...this is why I am so frustrated!

    My anastamosis has two strictures and the cause for closing up is scar tissue.

    Hello dwhite
    Sorry you are
    Hello dwhite
    Sorry you are having such a hard time. I was a caregiver for my dad. He passed away from ec with mets to the liver in March. He too had a lot of scar tissue in his esophagus from the chemo and radiation treatments. My dad had one dilation, which did not do too much, and then had a stent put in. His stent stayed in place and he did very well with it. It is unfortunate that the stent did not work for you. I would not be happy with my doctor either if he made me feel the way your dr makes you feel. Have you ever considered getting a second opinion? Maybe another surgeon to do the dilation? Just a thought. Hope all starts to turn around for you soon. Keep us updated.
    Tina
  • sandy1943
    sandy1943 Member Posts: 824
    #6
    congradulations on being a
    congradulations on being a four year survivor!
    I had surgery in may 2008. I have had three dilations. The Dr. didn't have success with the first two because of inflamation.Before the third one I had to take tiny bites and grated a lot of my meats. Two months ago it was closed almost completely. The dr. used a pediatric scope and once again wasn't able to get the results he wanted, but it has been a lot better this time. He told me acid reflux can cause inflamation and can be a cause of it closing. Since then I try even harder to keep down reflux. I take meds for it and sleep ellivated. So far it's been a lot better. I'm not having to grate my food. The dr. explained the surgery to open it, and I definately don't want it. I know from experience how frustating this can be for you.
    Good luck in future treatment and please keep posting. I might need to use your experience in the future.
    Sandra
  • dsmasters
    dsmasters Member Posts: 22
    #7
    I am going through the same thing
    I had my surgery in June. The first 4 weeks after surgery were great. After that though I had trouble swallowing and had 3 dialations in 6 weeks. My GI doctor saw they weren't working so he put a stent in my throat. It is a covered metal stent and works great. He left the first one in for 6 weeks which dilated me to 18mm (within 2 days of it being put in). He then took that one out and I have had the current one for 4 weeks which is at 23mm. He is planning to leave this one in for another 6 weeks or so. The hope is that when we take this one out I won't need another one.

    My doc says that using the stent in this way is called "off label" meaning this is not the intended use. It has been working though as I can eating anything my stomach can handle and I have yet to get anything stuck in my throat.

    Here is my doctors info in the case you want to pass it to your doctor:

    Round Rock Specialty Clinic: Havemann Benjamin D MD
    302 University Blvd, Round Rock, TX 78665-1032
    512-509-0200

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