complete esophageal blockage

amy_evan2005
amy_evan2005 Member Posts: 39
edited March 2014 in Esophageal Cancer #1
Hi, we are looking for anyone with experience of blockage due to radiation. My husband finshed radiation & chemo for throat cancer the beginning of Sept. & is still unable to eat. He finally went in to have esophagus dilated yesterday only to be told that they were unable to do it because he has complete blockage because of scar tissue. We go in tomorrow to set up surgery & find out details.
Thank you,

Amy & Evan
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Comments

  • Unknown
    Unknown
    #2
    This comment has been removed by the Moderator
  • amy_evan2005
    amy_evan2005 Member Posts: 39
    #3
    unknown said:

    This comment has been removed by the Moderator

    thanks for writing
    Hi William. We live in Indiana. We're not really sure what surgery they are doing. Other than somehow they have to get it open in order to dilate it. We can tell from the reaction from the ones that gave him his barium swallow test last Friday & the reaction yesterday from the GI Dr's & nurses that they have let him go way to long without looking for the problem. I actually had a nurse from the GI office get into it with the nurse from the ENT office yesterday about the severity of his blockage & the fact they wouldn't see him yesterday since they are only one floor apart in the same building. Then when they told her they couldn't do anything until after first of year because the Dr. is going to Venezuela for Christmas she just gave up trying to get them to do anything more quickly. I am going to try to find a Dr. for a second opinion. We are suppose to be with "The Best" in our area, but I've yet to see it. He elected to have his gtube put in in July & thankfully he did. He has totally used his tube since August. He has lost forty lbs. Thank you for caring enough to write. Just communicating about it, at least, makes you feel like your not alone in this.

    Best wishes to you & yours,

    Amy & Evan
  • soccerfreaks
    soccerfreaks Member Posts: 2,788 Member
    #4
    unknown said:

    This comment has been removed by the Moderator

    VB
    I am also in Va Beach, Mr. Marshall, incidentally.

    I thank you for the prompt and kind reponse on behalf of this individual.

    Take care,

    Joe
  • Unknown
    Unknown
    #5
    soccerfreaks said:

    VB
    I am also in Va Beach, Mr. Marshall, incidentally.

    I thank you for the prompt and kind reponse on behalf of this individual.

    Take care,

    Joe

    This comment has been removed by the Moderator
  • Tina Blondek
    Tina Blondek Member Posts: 1,500 Member
    #6
    unknown said:

    This comment has been removed by the Moderator

    Hello and Welcome to this
    Hello and Welcome to this site! As far as a complete blockage is concerned, there is surgery that can be done to open the esophagus. As well as dilation and having a stent put in to open it up. Good luck and prayers are being sent.
    Tina
  • amy_evan2005
    amy_evan2005 Member Posts: 39
    #7
    update
    Evan went to the ENT Friday & she just doesn't understand how it can be completely blocked because when she looked down it in Nov. she didn't see a blockage. Maybe because she had already told me in Nov. that she had looked down his esophagus while she was in there but her scope was too big to go in to far. She now wants to go in this Wed. before she leaves[nurse had wrong week for Dr.'s vacation] to go through out patient surgery so she can try to get her scope down in to dilate. She has already told us that her scope is bigger & doesn't bend like the GI specialist that couldn't find an opening. I asked her if she had looked @ the pictures, because there is no opening. She just would like to try. Evan isn't going to let her do it until we get a second opinion & probably won't let her do it then.Thanks for the sites to look on. I'm sure they will help on our search for answers. Once again thank you all for your time & answers.

    Amy & Evan
  • Unknown
    Unknown
    #8
    amy_evan2005 said:

    update
    Evan went to the ENT Friday & she just doesn't understand how it can be completely blocked because when she looked down it in Nov. she didn't see a blockage. Maybe because she had already told me in Nov. that she had looked down his esophagus while she was in there but her scope was too big to go in to far. She now wants to go in this Wed. before she leaves[nurse had wrong week for Dr.'s vacation] to go through out patient surgery so she can try to get her scope down in to dilate. She has already told us that her scope is bigger & doesn't bend like the GI specialist that couldn't find an opening. I asked her if she had looked @ the pictures, because there is no opening. She just would like to try. Evan isn't going to let her do it until we get a second opinion & probably won't let her do it then.Thanks for the sites to look on. I'm sure they will help on our search for answers. Once again thank you all for your time & answers.

    Amy & Evan

    This comment has been removed by the Moderator
  • amy_evan2005
    amy_evan2005 Member Posts: 39
    #9
    unknown said:

    This comment has been removed by the Moderator

    thank you
    Dear William & Loretta,
    Thank you so much for your time & your caring. I will call Angela tomorrow & speak with her. I spoke with the GI specialist that tried to dilate last week today & they told us the reason they had sent him back to the ENT is because the blockage is so high up it's more in the throat area than what they deal with. I remember the ENT initially saying they were sending us to the GI specialist because it is in the esophagus which isn't really their area of expertise. I can see in the pictures that it is in the esophagus behind the voice box which is where the tumor was. I'm not sure who's "area of expertise" this would fall under, but I agree with you, so far everyone we've seen has "passed the buck". They have absolutely no idea what they're dealing with from the oncologist to the ENT to the GI Dr.'s. I will keep you updated about what happens. I have the next three days off & I'm going to do some research.

    Thank you,
    Amy & Evan
  • Unknown
    Unknown
    #10
    amy_evan2005 said:

    thank you
    Dear William & Loretta,
    Thank you so much for your time & your caring. I will call Angela tomorrow & speak with her. I spoke with the GI specialist that tried to dilate last week today & they told us the reason they had sent him back to the ENT is because the blockage is so high up it's more in the throat area than what they deal with. I remember the ENT initially saying they were sending us to the GI specialist because it is in the esophagus which isn't really their area of expertise. I can see in the pictures that it is in the esophagus behind the voice box which is where the tumor was. I'm not sure who's "area of expertise" this would fall under, but I agree with you, so far everyone we've seen has "passed the buck". They have absolutely no idea what they're dealing with from the oncologist to the ENT to the GI Dr.'s. I will keep you updated about what happens. I have the next three days off & I'm going to do some research.

    Thank you,
    Amy & Evan

    This comment has been removed by the Moderator
  • amy_evan2005
    amy_evan2005 Member Posts: 39
    #11
    unknown said:

    This comment has been removed by the Moderator

    hello
    just wanted to let you know i've been without my computer so i haven't been able to stay in contact. Angela was very nice and very helpful. Evan is looking at surgery march 22nd to try to open it up. The new general surgeon we have did inform us that the reason this isn't normally done and not many can do it is because a stint should have been placed in before total blockage happens. Just wanted to once again thank you for your and your wives kindness and help. Will let you know what happens.

    Amy & Evan
  • amy_evan2005
    amy_evan2005 Member Posts: 39
    #12
    unknown said:

    This comment has been removed by the Moderator

    hello
    just wanted to let you know i've been without my computer so i haven't been able to stay in contact. Angela was very nice and very helpful. Evan is looking at surgery march 22nd to try to open it up. The new general surgeon we have did inform us that the reason this isn't normally done and not many can do it is because a stint should have been placed in before total blockage happens. Just wanted to once again thank you for your and your wives kindness and help. Will let you know what happens.

    Amy & Evan
  • oriontj
    oriontj Member Posts: 375
    #13
    amy_evan2005 said:

    thanks for writing
    Hi William. We live in Indiana. We're not really sure what surgery they are doing. Other than somehow they have to get it open in order to dilate it. We can tell from the reaction from the ones that gave him his barium swallow test last Friday & the reaction yesterday from the GI Dr's & nurses that they have let him go way to long without looking for the problem. I actually had a nurse from the GI office get into it with the nurse from the ENT office yesterday about the severity of his blockage & the fact they wouldn't see him yesterday since they are only one floor apart in the same building. Then when they told her they couldn't do anything until after first of year because the Dr. is going to Venezuela for Christmas she just gave up trying to get them to do anything more quickly. I am going to try to find a Dr. for a second opinion. We are suppose to be with "The Best" in our area, but I've yet to see it. He elected to have his gtube put in in July & thankfully he did. He has totally used his tube since August. He has lost forty lbs. Thank you for caring enough to write. Just communicating about it, at least, makes you feel like your not alone in this.

    Best wishes to you & yours,

    Amy & Evan

    Amy where do you live in
    Amy where do you live in Indiana...we're in the Northwest IN...and my husband goes to the U. of Chicago Center for Advanced Medicine...he was told he couldn't have surgery..so he did a clinical trial and had Erbitux and two other chemo drugs...Are you close to Chicago or Indinapolis or even some of the Ohio or Kentucky hospitals? I agree with William maybe it's time to look elsewhere...praying for you and Evan.

    jan
  • amy_evan2005
    amy_evan2005 Member Posts: 39
    #14
    amy_evan2005 said:

    hello
    just wanted to let you know i've been without my computer so i haven't been able to stay in contact. Angela was very nice and very helpful. Evan is looking at surgery march 22nd to try to open it up. The new general surgeon we have did inform us that the reason this isn't normally done and not many can do it is because a stint should have been placed in before total blockage happens. Just wanted to once again thank you for your and your wives kindness and help. Will let you know what happens.

    Amy & Evan

    Ed-PortOrange
    Just brought these up so they were easier to find.
  • Ed_PortOrange
    Ed_PortOrange Member Posts: 110
    #15
    amy_evan2005 said:

    Ed-PortOrange
    Just brought these up so they were easier to find.

    Thanks Amy
    I'll keep you posted on my progress.
  • Tina Blondek
    Tina Blondek Member Posts: 1,500 Member
    #16
    amy_evan2005 said:

    hello
    just wanted to let you know i've been without my computer so i haven't been able to stay in contact. Angela was very nice and very helpful. Evan is looking at surgery march 22nd to try to open it up. The new general surgeon we have did inform us that the reason this isn't normally done and not many can do it is because a stint should have been placed in before total blockage happens. Just wanted to once again thank you for your and your wives kindness and help. Will let you know what happens.

    Amy & Evan

    Hi Amy and Evan
    Just
    Hi Amy and Evan
    Just checking in with you guys. Have not heard from you since March 10. How is Evan doing and did he have surgery to get rid of the scar tissue blockage?
    Tina
  • amy_evan2005
    amy_evan2005 Member Posts: 39
    #17
    Tina Blondek said:

    Hi Amy and Evan
    Just
    Hi Amy and Evan
    Just checking in with you guys. Have not heard from you since March 10. How is Evan doing and did he have surgery to get rid of the scar tissue blockage?
    Tina

    update
    Hi Tina,
    Yes, they finally got him open about a month or so ago. He still isn't swallowing great or enough to survive on, but he is swallowing. Strangely, food better than most liquids. They removed his trach also so that was alot better for him. He finally has a good doctor and that has made so much difference.
    I've been on the head and neck board, but not this one lately. Sometimes forget what was asked where. Hope everyone is doing great and thanks for you caring.
    Amy & Evan
  • Unknown
    Unknown
    #18
    amy_evan2005 said:

    thanks for writing
    Hi William. We live in Indiana. We're not really sure what surgery they are doing. Other than somehow they have to get it open in order to dilate it. We can tell from the reaction from the ones that gave him his barium swallow test last Friday & the reaction yesterday from the GI Dr's & nurses that they have let him go way to long without looking for the problem. I actually had a nurse from the GI office get into it with the nurse from the ENT office yesterday about the severity of his blockage & the fact they wouldn't see him yesterday since they are only one floor apart in the same building. Then when they told her they couldn't do anything until after first of year because the Dr. is going to Venezuela for Christmas she just gave up trying to get them to do anything more quickly. I am going to try to find a Dr. for a second opinion. We are suppose to be with "The Best" in our area, but I've yet to see it. He elected to have his gtube put in in July & thankfully he did. He has totally used his tube since August. He has lost forty lbs. Thank you for caring enough to write. Just communicating about it, at least, makes you feel like your not alone in this.

    Best wishes to you & yours,

    Amy & Evan

    This comment has been removed by the Moderator
  • Unknown
    Unknown
    #19
    amy_evan2005 said:

    update
    Hi Tina,
    Yes, they finally got him open about a month or so ago. He still isn't swallowing great or enough to survive on, but he is swallowing. Strangely, food better than most liquids. They removed his trach also so that was alot better for him. He finally has a good doctor and that has made so much difference.
    I've been on the head and neck board, but not this one lately. Sometimes forget what was asked where. Hope everyone is doing great and thanks for you caring.
    Amy & Evan

    This comment has been removed by the Moderator
  • amy_evan2005
    amy_evan2005 Member Posts: 39
    #20
    unknown said:

    This comment has been removed by the Moderator

    update
    Dear William & Loretta,
    Thank you so much for your help and advice. The Thorasic Surgeon that Evan saw referred us to this doctor. He also happened to be in the same group at IU Medical Center that Angela recommended. Both the thorasic and ent doctor operated on his esophagus to get it open. One went through the mouth and the other through the stomach with scopes basically until one saw the other ones poke through. Surgery took several hours, but once they got it through it wasn't very thick so that made it easier. Evan has had several dilations in the past few months and is finally starting to eat again. He has some issues now with the muscles and all not working properely. He won't see the doctor again til the end of July. Just now waiting to see how everything goes for awhile before they decide if he needs dilated again.
    All his biopsies and his pet scan have come back clear so that is the best news we could get. The rest is just going to take some time and work.
    I'll keep everyone updated now that I have internet service again. And yes the blockage was from scar tissue. The Thorasic surgeon told us that a stint should have been put in when he started having problems swallowing so early in radiation.
    Thanks again,
    Amy & Evan
  • Unknown
    Unknown
    #21
    amy_evan2005 said:

    update
    Dear William & Loretta,
    Thank you so much for your help and advice. The Thorasic Surgeon that Evan saw referred us to this doctor. He also happened to be in the same group at IU Medical Center that Angela recommended. Both the thorasic and ent doctor operated on his esophagus to get it open. One went through the mouth and the other through the stomach with scopes basically until one saw the other ones poke through. Surgery took several hours, but once they got it through it wasn't very thick so that made it easier. Evan has had several dilations in the past few months and is finally starting to eat again. He has some issues now with the muscles and all not working properely. He won't see the doctor again til the end of July. Just now waiting to see how everything goes for awhile before they decide if he needs dilated again.
    All his biopsies and his pet scan have come back clear so that is the best news we could get. The rest is just going to take some time and work.
    I'll keep everyone updated now that I have internet service again. And yes the blockage was from scar tissue. The Thorasic surgeon told us that a stint should have been put in when he started having problems swallowing so early in radiation.
    Thanks again,
    Amy & Evan

    This comment has been removed by the Moderator

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