Partial Glossectomy with primary closure

braziliangirl82
braziliangirl82 Member Posts: 42
in Head and Neck Cancer #1
Hi friends! How are you?

I´m here to ask / share experiences in people who had partial glossectomy with primary closure. It´s been 37 days from my surgery and I´m still talking like a 5 y.o. child with speaking problems. Some works really strange, even more in my main language (portuguese). English is a bit better...

I´d like to know people in the same situation or that had good news for me. Months after surgery and how are you speaking (hope clearly).

I´d be happy share your experiences to help me and other people that are going through this surgery :)

Comments

  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    #2
    My Portuguese sounds terrible
    Just kidding. My tongue is paralyzed on the left side (half of it is completely non-functional) from my surgery last year. My speech is now quite good, provided I speak slowly and concentrate on forming the words properly. I am understandable enough that people don't ask me to repeat myself, even over the telephone. If I rush, or especially if I am upset, the words are far harder to understand.

    You are still healing at 37 days. Things will improve. I think my situation took almost a year to improve as much as it was going to.

    Pat
  • braziliangirl82
    braziliangirl82 Member Posts: 42
    #3
    longtermsurvivor said:

    My Portuguese sounds terrible
    Just kidding. My tongue is paralyzed on the left side (half of it is completely non-functional) from my surgery last year. My speech is now quite good, provided I speak slowly and concentrate on forming the words properly. I am understandable enough that people don't ask me to repeat myself, even over the telephone. If I rush, or especially if I am upset, the words are far harder to understand.

    You are still healing at 37 days. Things will improve. I think my situation took almost a year to improve as much as it was going to.

    Pat

    Thanks a lot Pat
    What you mean your tongue is "paralyzed". They fit the tongue at a place for ever? Mine is stiched, but not paralyzed, I think the starting point at the right side of it is stiched to the side. Some words are good. Some not...

    But OMG, a year? I hope to not sound impatient but that´s a lot of time. I generally to speeches for my team and invited to classes. And I like it so much. Hope to not wait this long. I told my clients that I´ll be unable for meetings for 2 months. :/

    Thanks a lot!
  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    #4
    braziliangirl82 said:

    Thanks a lot Pat
    What you mean your tongue is "paralyzed". They fit the tongue at a place for ever? Mine is stiched, but not paralyzed, I think the starting point at the right side of it is stiched to the side. Some words are good. Some not...

    But OMG, a year? I hope to not sound impatient but that´s a lot of time. I generally to speeches for my team and invited to classes. And I like it so much. Hope to not wait this long. I told my clients that I´ll be unable for meetings for 2 months. :/

    Thanks a lot!

    The nerve supply to the tongue
    is the lingual nerve. My left lingual nerve had to be cut during my surgery, so I have no nerve supplying the left side of the tongue. The muscle, being paralyzed, has atrophied (shrunk) to where the left side of my tongue is now much smaller than the right side. Additionally, I had a large defect created in the floor of my mouth next to the tongue that was repaired by grafting skin, muscle and blood supply from my forearm.

    Several things that I've noticed. The first is that my speech sounds far worse to me than it does to other people. I don't know why that is, but this has been consistently true. The second is that my pronunciation is much better when I purposefully speak more slowly than before.

    I sometimes warn people, especially when I'm speaking to them on the telephone, that I've had surgery which somewhat interferes with my speech, and that if they find me hard to understand they should feel free to ask me to repeat.

    It is never too early for you to see a speech therapist, if you haven't already. They may help your recovery quite a bit.

    Pat
  • braziliangirl82
    braziliangirl82 Member Posts: 42
    #5
    longtermsurvivor said:

    The nerve supply to the tongue
    is the lingual nerve. My left lingual nerve had to be cut during my surgery, so I have no nerve supplying the left side of the tongue. The muscle, being paralyzed, has atrophied (shrunk) to where the left side of my tongue is now much smaller than the right side. Additionally, I had a large defect created in the floor of my mouth next to the tongue that was repaired by grafting skin, muscle and blood supply from my forearm.

    Several things that I've noticed. The first is that my speech sounds far worse to me than it does to other people. I don't know why that is, but this has been consistently true. The second is that my pronunciation is much better when I purposefully speak more slowly than before.

    I sometimes warn people, especially when I'm speaking to them on the telephone, that I've had surgery which somewhat interferes with my speech, and that if they find me hard to understand they should feel free to ask me to repeat.

    It is never too early for you to see a speech therapist, if you haven't already. They may help your recovery quite a bit.

    Pat

    I told ya
    I told you that I´m that crazy and non-patient. I´m seeing 2 speech theraphists. Ok tell me that I´m crazy, but I want fast performance and double theraphy won´t kill me, right?

    I had no nerve involvement because I think my lesion was small. But still bothers me.

    The other thing is my smile does not look the same, and the doc said that´s because on neck dissect the nerv is affected. However he sais it´s a long term recovery... hope I can smile as before, like this :D not like this :|/

    And U are right, speaking slowly helps.
  • Ingrid K
    Ingrid K Member Posts: 813
    #6
    braziliangirl82 said:

    I told ya
    I told you that I´m that crazy and non-patient. I´m seeing 2 speech theraphists. Ok tell me that I´m crazy, but I want fast performance and double theraphy won´t kill me, right?

    I had no nerve involvement because I think my lesion was small. But still bothers me.

    The other thing is my smile does not look the same, and the doc said that´s because on neck dissect the nerv is affected. However he sais it´s a long term recovery... hope I can smile as before, like this :D not like this :|/

    And U are right, speaking slowly helps.

    time frames
    Everything Pat mentioned above was true for me also. If I talk to fast, or I am upset, I start to slur my words.... (and spit) So if I concentrate on speaking slow and deliberately sound out the words, I am fine. Also true, you always sound worse to yourself than to others. Since you are already seeing (2) speech experts, you should be in good hands. but please try and be patient, it does take a while. I won't discourage you and give you a time frame because everybody is different, but a year sounds about right. My smile is very different, but everyone says I look fine. GOOD LUCK with your healing.
  • braziliangirl82
    braziliangirl82 Member Posts: 42
    #7
    Ingrid K said:

    time frames
    Everything Pat mentioned above was true for me also. If I talk to fast, or I am upset, I start to slur my words.... (and spit) So if I concentrate on speaking slow and deliberately sound out the words, I am fine. Also true, you always sound worse to yourself than to others. Since you are already seeing (2) speech experts, you should be in good hands. but please try and be patient, it does take a while. I won't discourage you and give you a time frame because everybody is different, but a year sounds about right. My smile is very different, but everyone says I look fine. GOOD LUCK with your healing.

    thanks Ingrid K
    thanks! maybe patience is my cancer main lesson. what stage were you diagnosed and when was your surgery? I´ll be happy to know! thanks
  • Ingrid K
    Ingrid K Member Posts: 813
    #8
    braziliangirl82 said:

    thanks Ingrid K
    thanks! maybe patience is my cancer main lesson. what stage were you diagnosed and when was your surgery? I´ll be happy to know! thanks

    more info
    I had a partial glossectomy with neck dissection on january of 2011 (so just one year ago last week)... I was at Stage III and lost 70% of my tongue, which was rebuilt with a flap of tissue, skin, nerves and artery from my forearm. I had 35 radiation sessions that ended in May of 2011 and left me with no taste buds. I am still on a feeding tube, but slowly starting to eat food again. You didn't mention radiation or chemo so hopefully you will not need either. I was lucky and no lymph nodes were involved, so I did not have to have chemo, just the radiation which was bad enough.
  • braziliangirl82
    braziliangirl82 Member Posts: 42
    #9
    Ingrid K said:

    more info
    I had a partial glossectomy with neck dissection on january of 2011 (so just one year ago last week)... I was at Stage III and lost 70% of my tongue, which was rebuilt with a flap of tissue, skin, nerves and artery from my forearm. I had 35 radiation sessions that ended in May of 2011 and left me with no taste buds. I am still on a feeding tube, but slowly starting to eat food again. You didn't mention radiation or chemo so hopefully you will not need either. I was lucky and no lymph nodes were involved, so I did not have to have chemo, just the radiation which was bad enough.

    Hi Ingrid
    I was Stage I, T1N0M0. Had profilatic neck dissection, levels I, II and III, no radical neck dissection. I won´t need chemo or radio, thankfully. No lymphonodes involved (lucky). My surgery was 37 days ago...

    The doctor said my recurrence chance is small and radio won´t decrease it. I just need to follow up... and be patient.
  • Ingrid K
    Ingrid K Member Posts: 813
    #10
    braziliangirl82 said:

    Hi Ingrid
    I was Stage I, T1N0M0. Had profilatic neck dissection, levels I, II and III, no radical neck dissection. I won´t need chemo or radio, thankfully. No lymphonodes involved (lucky). My surgery was 37 days ago...

    The doctor said my recurrence chance is small and radio won´t decrease it. I just need to follow up... and be patient.

    YES, you will learn to
    YES, you will learn to become a "patient" patient !! wish you well.
  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    #11
    Ingrid K said:

    time frames
    Everything Pat mentioned above was true for me also. If I talk to fast, or I am upset, I start to slur my words.... (and spit) So if I concentrate on speaking slow and deliberately sound out the words, I am fine. Also true, you always sound worse to yourself than to others. Since you are already seeing (2) speech experts, you should be in good hands. but please try and be patient, it does take a while. I won't discourage you and give you a time frame because everybody is different, but a year sounds about right. My smile is very different, but everyone says I look fine. GOOD LUCK with your healing.

    oh, yeah
    the spit thing. I forgot to mention that.

Discussion Boards