Help, Has Anyone Had Base of Tongue Reconstruction?

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deb e19
deb e19 Member Posts: 15
edited February 2023 in Head and Neck Cancer #1
I was diagnosed Feb 2010 with tumor on base of tongue with lymph node involvement: mucoepidermoid carcinoma. In March I had surgery to remove tumor and neck dissection to remove lymph nodes. The cancer had returned to base of my tongue and now I have to surgery to remove the affected area in which they will have to reconstruct the base of my tongue. Has anyone had this kind of reconstruction done and what kind of setback am I facing. Any answers will help.
debbie

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  • soccerfreaks
    soccerfreaks Member Posts: 2,788 Member
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    yes
    I had reconstruction surgery, debbie, as did a number of others who visit this site regularly.

    You might check a brief bio on this site by a kind gentleman (he might argue the term :)) named SASH. The direct link is: http://csn.cancer.org/user/67608

    For a MUCH longer description of what goes on, including a depiction of every single emotion I have felt for the past six years, try this one too: http://csn.cancer.org/user/72176

    Otherwise, I am sure that things have changed at least a bit in the past six years (I am now all-clear, by the way, as is SASH, he a 10-year survivor, if I am not mistaken), and you can be sure that no two procedures/treatments seem to run the same course anyway, but if things run more or less true to form, you can expect a somewhat lengthy surgery.

    In my case, they cut up a piece of my left thigh in case they needed it (they didn't), and then took a credit card-sized piece of my left arm, just above the wrist, which they did use. They also dug down to the bone to get nerves, and transplanted them along with the credit card tongue, to my face. I think this is what took so long, and I have not heard of many who got the nerve transplant, so maybe you won't have that to lengthen your surgery.

    They also did a radical neck dissection (and since you have had some experience with treating the cancer in the past, perhaps this will not be an issue).

    Following the surgery, they placed me in ICU in an induced coma for four days, so that my wounds could heal, my tongue could do whatever they wanted it to do, without me moving around and trying to do what I used to do with my face and my mouth and my tongue.

    I spent an additional two weeks in the hospital in recovery before coming home with a swollen head and a PEG tube from which to get nutrition.

    It was not as bad as it sounds, I don't think, although it was probably worse than I remember.

    At home, I was on a fentanyl patch for some time, although I can't remember how long, and it was never an issue of addiction. In my case, it was not so much that I was some macho guy who wanted to lose the pain patch, but rather that I needed it less and less and they had advised me that they really don't worry so much about people who really need pain relief becoming addicted. I did not become addicted and was off of the patch in short order, although I continued with a number of others for some time.

    With respect to the surgery and its aftermath, I had a bunch of staples in my face and neck. They essentially broke my face in half to get to the area they needed to work with, then sewed it back up and used a titanium notch (or two) to hold my lower face together. That particular engineering works to this very day and doesn't even seem to upset the airport screeners.

    Removal of the staples was not painful, honestly, even though I suspected it would be among the most painful of my experiences.

    It is immediately hard to swallow, of course, and even to drink. Me, I was given ice while still in the hospital (chipped) and would swear to this day that it was sweetened, even if everyone else still insists that was not the case. I loved the stuff. Eventually, hopefully, you will have the will and the ability to start eating again. Me, I am doing a pretty good job right now of eating most of what I ever ate, even if there are some issues still. I've had four dilations (esophogeal expansions) and this last one really seemed to do the trick.

    It is worth the effort.

    Best wishes to you and your family.

    Take care,

    Joe
  • deb e19
    deb e19 Member Posts: 15
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    yes
    I had reconstruction surgery, debbie, as did a number of others who visit this site regularly.

    You might check a brief bio on this site by a kind gentleman (he might argue the term :)) named SASH. The direct link is: http://csn.cancer.org/user/67608

    For a MUCH longer description of what goes on, including a depiction of every single emotion I have felt for the past six years, try this one too: http://csn.cancer.org/user/72176

    Otherwise, I am sure that things have changed at least a bit in the past six years (I am now all-clear, by the way, as is SASH, he a 10-year survivor, if I am not mistaken), and you can be sure that no two procedures/treatments seem to run the same course anyway, but if things run more or less true to form, you can expect a somewhat lengthy surgery.

    In my case, they cut up a piece of my left thigh in case they needed it (they didn't), and then took a credit card-sized piece of my left arm, just above the wrist, which they did use. They also dug down to the bone to get nerves, and transplanted them along with the credit card tongue, to my face. I think this is what took so long, and I have not heard of many who got the nerve transplant, so maybe you won't have that to lengthen your surgery.

    They also did a radical neck dissection (and since you have had some experience with treating the cancer in the past, perhaps this will not be an issue).

    Following the surgery, they placed me in ICU in an induced coma for four days, so that my wounds could heal, my tongue could do whatever they wanted it to do, without me moving around and trying to do what I used to do with my face and my mouth and my tongue.

    I spent an additional two weeks in the hospital in recovery before coming home with a swollen head and a PEG tube from which to get nutrition.

    It was not as bad as it sounds, I don't think, although it was probably worse than I remember.

    At home, I was on a fentanyl patch for some time, although I can't remember how long, and it was never an issue of addiction. In my case, it was not so much that I was some macho guy who wanted to lose the pain patch, but rather that I needed it less and less and they had advised me that they really don't worry so much about people who really need pain relief becoming addicted. I did not become addicted and was off of the patch in short order, although I continued with a number of others for some time.

    With respect to the surgery and its aftermath, I had a bunch of staples in my face and neck. They essentially broke my face in half to get to the area they needed to work with, then sewed it back up and used a titanium notch (or two) to hold my lower face together. That particular engineering works to this very day and doesn't even seem to upset the airport screeners.

    Removal of the staples was not painful, honestly, even though I suspected it would be among the most painful of my experiences.

    It is immediately hard to swallow, of course, and even to drink. Me, I was given ice while still in the hospital (chipped) and would swear to this day that it was sweetened, even if everyone else still insists that was not the case. I loved the stuff. Eventually, hopefully, you will have the will and the ability to start eating again. Me, I am doing a pretty good job right now of eating most of what I ever ate, even if there are some issues still. I've had four dilations (esophogeal expansions) and this last one really seemed to do the trick.

    It is worth the effort.

    Best wishes to you and your family.

    Take care,

    Joe

    tongue reconstruction
    Thank you so much for responding. Since I just had my biopsy I will not meet with my surgeon for two weeks. Wow it really sounds bad. I thought bilateral neck dissection was bad, but this sounds well it sounds horrible. I will check out those other sites. Thanks again. In infor is appreciated.
    Blessings deb e19
  • soccerfreaks
    soccerfreaks Member Posts: 2,788 Member
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    deb e19 said:

    tongue reconstruction
    Thank you so much for responding. Since I just had my biopsy I will not meet with my surgeon for two weeks. Wow it really sounds bad. I thought bilateral neck dissection was bad, but this sounds well it sounds horrible. I will check out those other sites. Thanks again. In infor is appreciated.
    Blessings deb e19

    sites
    Those 'sites' are pages for SASH and myself on this very site (and I offered his to you without his permission, which I am fairly sure he will not mind), I assume carefully screened by CSN staff.

    It is really not as bad as it sounds, deb, since you sleep through most of it while your family does all of the worrying.

    Please take a look at those pages (and the ensuing blog, in my case). It is WORTH the effort!

    Take care,

    Joe
  • MARTYRBENNETT
    MARTYRBENNETT Member Posts: 1 Member
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    ARE YOU ABLE TO TALK AFTER REPLACING THE TONGUE WITH A 'FLAP'?

  • wbcgaruss
    wbcgaruss Member Posts: 2,308 Member
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    Marty welcome to the CSN H&N forum.

    I have read about people having this done and we have had people on here at times that had this procedure done.

    I believe you can talk but it may take some learning and therapy from a speech therapist and you probably won't sound the same.

    If you are in this situation please talk to your care team because your case is unique to you and they can give you specifics on your situation.

    Here is a lady that is extremely inspiring that had tongue surgery that I save for just such an occasion.

    She has an amazing story, inspiring and uplifting.




    Take Care God Bless-Russ

  • Duggie88
    Duggie88 Member Posts: 760 Member
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    Deb

    I had part of the base of my tongue removed. They also removed my epiglottis, a few lymph nodes and my uvula. The surgeon was able to reconstruct my epiglottis while in the hospital for just over three days. I guess it would depend on how much of your tongue they will remove that will take you closer to soccerfreaks situation. Write down all your questions so when you visit the doctor he can best explain what to expect. Most importantly.....

    StayPositiveStayStrong

    Jeff