Recovering from surgery

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I'm currently waiting to be scheduled for surgery to remove my esophagus and voice box within the next couple of days. I would really like to hear from others that have had this same kind of surgery. How long was the recovery process? What can I expect in the future for speaking options?

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  • BMGky
    BMGky Member Posts: 621
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    Sounds more complex than the
    Sounds more complex than the removal of the EC tumor. I would recommend consulting with an ASHA certified speech language pathologist [most hospitals have them on staff] and ask about what to do. Some people recommend doing pre-recording of specific requests or favorite poems, etc, to remember your voice. Some recommend making lists of key things you want to communicate following the laryngectomy. Technology is a real boost to communication. Also, there are some specific voicing techniques that can be taught in some instances; however, you will also be dealing with the esophagectomy as well. So, contact an SLP who works with laryngectomy patients for some information.

    Recovery following surgery depends a lot on the type of surgery you have. In our instance, my husband had a lengthy recovery; however, he is two years post op with no evidence of disease (NED). Eating can be tricky. If you have a jtube or will be getting one, you will find it soooo helpful. Others will be posting about eating do's and don'ts, I am sure. They have more knowledge along these lines. Hopefully, your recovery will be uneventful; however, ask your questions here. They will help you.

    Let us know how you are doing. BMGky
    Caregiver for husband
  • JReed
    JReed Member Posts: 428
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    EC & Voice Box
    Welcome to our 'family'. To answer your question - I am going to private message (CSN Email) you my husband's cell phone number - a guy he used to work with had the same thing going on with him and he just had his voice box removed about 4 weeks ago. He texts Don on the cell phone - but Don can tell you what he has gone through and how he is doing. I will also have him text Rick to see if he can give you Rick's cell phone so you may communicate directly with him.

    There is nothing like talking someone who has gone through what you are going through. Several of the members here have taken their time and called Don (who is normally very shy) and that was SOOOOO helpful for him.

    Talk with you soon,
    Judy
  • TinasVoice
    TinasVoice Member Posts: 8
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    BMGky said:

    Sounds more complex than the
    Sounds more complex than the removal of the EC tumor. I would recommend consulting with an ASHA certified speech language pathologist [most hospitals have them on staff] and ask about what to do. Some people recommend doing pre-recording of specific requests or favorite poems, etc, to remember your voice. Some recommend making lists of key things you want to communicate following the laryngectomy. Technology is a real boost to communication. Also, there are some specific voicing techniques that can be taught in some instances; however, you will also be dealing with the esophagectomy as well. So, contact an SLP who works with laryngectomy patients for some information.

    Recovery following surgery depends a lot on the type of surgery you have. In our instance, my husband had a lengthy recovery; however, he is two years post op with no evidence of disease (NED). Eating can be tricky. If you have a jtube or will be getting one, you will find it soooo helpful. Others will be posting about eating do's and don'ts, I am sure. They have more knowledge along these lines. Hopefully, your recovery will be uneventful; however, ask your questions here. They will help you.

    Let us know how you are doing. BMGky
    Caregiver for husband

    upcoming surgery
    Thanks for the advice, it is helpful. I do have a J-tube to help with nutrition, it was
    placed as a back up during radiation, incase I had trouble eating. I continue to be able to keep my weight on without using tube feedings. It will be used alot after surgery while I get adusted to eating again. I still do not have a scheduled date for surgery, this is difficult not knowing my last speaking day. So far I'm feeling strong and almost normal, except for some achy pain in my jaw. I went to the dentist, and it is possible from stress I'm gritting my teeth and causing the pain. I bought a mouth guard to wear at night. It just started about 2 weeks ago. I will keep posting as I go through this process. I do have a question about what are the best foods to start eating when the time comes?

    Tina
  • BobHaze
    BobHaze Member Posts: 162 Member
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    upcoming surgery
    Thanks for the advice, it is helpful. I do have a J-tube to help with nutrition, it was
    placed as a back up during radiation, incase I had trouble eating. I continue to be able to keep my weight on without using tube feedings. It will be used alot after surgery while I get adusted to eating again. I still do not have a scheduled date for surgery, this is difficult not knowing my last speaking day. So far I'm feeling strong and almost normal, except for some achy pain in my jaw. I went to the dentist, and it is possible from stress I'm gritting my teeth and causing the pain. I bought a mouth guard to wear at night. It just started about 2 weeks ago. I will keep posting as I go through this process. I do have a question about what are the best foods to start eating when the time comes?

    Tina

    Hospital will help
    Hi Tina:

    Your hospital will give you help with diet recommendations. I had my surgery at Massachusetts General Hospital in Boston, and the dieticians met with my wife before I was released to talk about it and give her some things on paper.

    But I also recommend you check out the University of Pittsburg Medical Center’s recommendations at http://www.upmc.com/healthatoz/patienteducation/g/pages/dietafteranesophagectomy.aspx. This is essentially what Mass General recommended, and it worked really well for me. I did need the tube feeding at night for a couple of weeks, because all I was taking orally for that time was “clear liquids” for a week then “full liquids” for a week, which help the esophagus and anastomosis (where they stitch what’s left of the stomach to what’s left of the esophagus) heal but don’t provide much nutrition.

    But as I say, the hospital should give you whatever information you want & need about recovery from the surgery, including nutrition.

    Best of luck to you!

    FEC,
    Bob
    T1aN0M0
    Dx 8/3/11
    MIE 9/23/11
  • TinasVoice
    TinasVoice Member Posts: 8
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    BobHaze said:

    Hospital will help
    Hi Tina:

    Your hospital will give you help with diet recommendations. I had my surgery at Massachusetts General Hospital in Boston, and the dieticians met with my wife before I was released to talk about it and give her some things on paper.

    But I also recommend you check out the University of Pittsburg Medical Center’s recommendations at http://www.upmc.com/healthatoz/patienteducation/g/pages/dietafteranesophagectomy.aspx. This is essentially what Mass General recommended, and it worked really well for me. I did need the tube feeding at night for a couple of weeks, because all I was taking orally for that time was “clear liquids” for a week then “full liquids” for a week, which help the esophagus and anastomosis (where they stitch what’s left of the stomach to what’s left of the esophagus) heal but don’t provide much nutrition.

    But as I say, the hospital should give you whatever information you want & need about recovery from the surgery, including nutrition.

    Best of luck to you!

    FEC,
    Bob
    T1aN0M0
    Dx 8/3/11
    MIE 9/23/11

    Hospital help
    Thanks for responding. The website you recommeded looks like a great resource. I have been trying to educate myself as much as I can. Still waiting for surgery date. I will have
    my surgery at Cancer Treatment Centers of America in Philadelphia, I'm sure they will
    have everything ready to help me adjust, they are a great facility.

    Tina
  • This comment has been removed by the Moderator
  • jgwright
    jgwright Member Posts: 242
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    CTCA
    CTCA is a for profit Cancer Center that will give you sold gold care as long as the insurance holds out. They were not my first choice, although there is one in Seattle, not that far away. Do a little research on the Internet.

    Some people love them dearly, and the way they treat you is First Cabin. There is a certain "woo" factor there how ever, as they are willing to actually use disproven methods, as long as you are willing to pay.

    --Jerry
  • TinasVoice
    TinasVoice Member Posts: 8
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    unknown said:

    This comment has been removed by the Moderator

    Second Opinion
    Thanks for the advice, I'm in the process of getting a second opinion with Dr. Luketich.
    Tomorrow I plan to fax my records to his office. My surgery has been scheduled for May 8th, so I have to hope for a quick response. I live in Reading, Pa, so Pittsburgh is not that far away.

    Staying Strong,
    Tina