Hypoglossal Nerves

Artray
Artray Member Posts: 24
in Head and Neck Cancer #1
Hello everyone...it's been quite awhile since I've been on the boards and I feel guilty not staying in touch after all we'd been thru know that I had some to share with everyone.
My husband has been doing wonderful after a left RND two years ago and a moderate neck dissection last summer to take care of the right side of his neck...he's eating pretty good and doesn't have the severe symptoms we anticipated ...they've seemed to settle down after time.
However, the reason for the surgery last summer was a spot on the right side of his neck (all the previous work/treatment was on the left and it's clean). After the surgery the Dr told us the tumor was adjacent to the hypoglossal nerve and since they'd taken it on the left we didn't want them to take it on the right so they did the best they could and the in Nov he had 'mop-up' chemo/radiation.
Well, PET scan in April showed the spot still there and this week it showed an uptick in activity. We're meeting with the surgeon next Tues to discuss our options (can't have anymore chemo/radiation) and have also gone to another cancer hospital for a second opinion.
Question is does anyone know anything about prognosis if both hypoglossal nerves are gone. Dr's say he'd be dependent on feeding tube for life and might not be able to speak...this, to us, is almost an end game option. If there's hope of anything else I would be so thankful to hear...I know all of us on the boards have such intimate experiences that the Dr's won't impart...praying we have a choice
here.
Thanks so much for any help you can give!

Comments

  • Pam M
    Pam M Member Posts: 2,196
    #2
    No Help - Just Hopes
    Glad to hear hubby's been doing well. I have no experience/knowledge regarding hypoglossal nerve. Hoping your hubby can have successful treatment AND still talk. Good luck with the upcoming surgeon meeting.
  • Artray
    Artray Member Posts: 24
    #3
    Pam M said:

    No Help - Just Hopes
    Glad to hear hubby's been doing well. I have no experience/knowledge regarding hypoglossal nerve. Hoping your hubby can have successful treatment AND still talk. Good luck with the upcoming surgeon meeting.

    not good reports
    Thanks for your thoughts, Pam. We met with the surgeon today and news was not good...I'm really scared and the more I read the more overwhelmed I become. They're saying that the best treatment is to remove everything, which means he won't be able to eat or speak, putting in a feeding tube and trach forever...we've had the feeding tube during initial radiation and know what that's about but the thought of him never speaking...Dr said we don't have much time to decide so we're scrambling around to get as many different opinions as we can, to exhaust all options before we take this huge step.
    Not much info on the web about this particular condition so I feel so inept and so alone... he doesn't really read up much on it (which was like when the cancer first came on) so I'm the one gathering all the info and will be prepared...
    Just don't know where to turn...can't believe this is really happening...
  • sweetblood22
    sweetblood22 Member Posts: 3,228
    #4
    Artray said:

    not good reports
    Thanks for your thoughts, Pam. We met with the surgeon today and news was not good...I'm really scared and the more I read the more overwhelmed I become. They're saying that the best treatment is to remove everything, which means he won't be able to eat or speak, putting in a feeding tube and trach forever...we've had the feeding tube during initial radiation and know what that's about but the thought of him never speaking...Dr said we don't have much time to decide so we're scrambling around to get as many different opinions as we can, to exhaust all options before we take this huge step.
    Not much info on the web about this particular condition so I feel so inept and so alone... he doesn't really read up much on it (which was like when the cancer first came on) so I'm the one gathering all the info and will be prepared...
    Just don't know where to turn...can't believe this is really happening...

    Artray
    I am sorry to read this. You are doing the only thing you can do, which is to get as many opinions as you can and to exhaust all options before taking that step. I wish I had knowledge or help for you, but all I can offer is prayers and we will always be here when and if you need to vent.
  • Glenna M
    Glenna M Member Posts: 1,576
    #5
    Artray said:

    not good reports
    Thanks for your thoughts, Pam. We met with the surgeon today and news was not good...I'm really scared and the more I read the more overwhelmed I become. They're saying that the best treatment is to remove everything, which means he won't be able to eat or speak, putting in a feeding tube and trach forever...we've had the feeding tube during initial radiation and know what that's about but the thought of him never speaking...Dr said we don't have much time to decide so we're scrambling around to get as many different opinions as we can, to exhaust all options before we take this huge step.
    Not much info on the web about this particular condition so I feel so inept and so alone... he doesn't really read up much on it (which was like when the cancer first came on) so I'm the one gathering all the info and will be prepared...
    Just don't know where to turn...can't believe this is really happening...

    "not good reports"
    I wish I had information that could help you make your decision but all I can do is offer my support to you and your husband. I was told twice that my larynx would have to be removed so I can empathize with what you are both feeling.

    Praying for strength for both of you and that you will find the right answers.

    Stay strong,
    Glenna
  • Artray
    Artray Member Posts: 24
    #6
    Glenna M said:

    "not good reports"
    I wish I had information that could help you make your decision but all I can do is offer my support to you and your husband. I was told twice that my larynx would have to be removed so I can empathize with what you are both feeling.

    Praying for strength for both of you and that you will find the right answers.

    Stay strong,
    Glenna

    still looking...
    Well, we went for a second opinion today and it was basically the same as the first. He did tell us, however, that by trying other options besides the drastic surgery, the options would be palliative and may help for a short period but then the window of opportunity for this avenue would close.
    I've been talking to Cancer Treatment Center of America but after reading the thread on this board about them I don't feel so confident and also the thought of traveling from So Cal to Chicago is very daunting as well...especially with the severity of treatment we may need.
    What's so frustrating is that I keep looking for info on the internet about living without speaking/voice box...NOTHING. And also living with a feeding tube, past being temporary, seems like little to no info. We did the feeding tube thing when we first went thru chemo/radiation 2 years ago and we traveled with our boxes of Jevity so I'm very familiar with that whole repertoire.
    Just so worried about my husband spending the rest of his life without communication...he's not the type to write it down or type it out and his communication skills even with speaking are not the best at times (just his grasp of putting his thoughts into words).
    So frustrated at this point...have looked at support groups for H & N cancer and might check those out but really need to talk to those who are going thru the severity of treatment that we are...don't want to bring anyone down who's get better odds...we were there 2 years ago and I was so positive that if we did everything the Dr's said we'd kick this damn thing...every single step of the way. And apparently the cancer is just not cooperating
    Thank you to all for letting me vent...if nothing else I really appreciate that and need somewhere to be where other's understand our dilemna.

    Jeani
  • Dav1965
    Dav1965 Member Posts: 132
    #7
    God bless
    Why would he not be able to speak? I had a feeding tube for about 8 months and a trach for about a month. I could speak with the trach in. I just had to cover it so i could talk. The reason i had the trach was because they cut off 95% of my tongue and replaced it with my thigh and it was so swollen that my tongue blocked my airway. I dont know about what they are talking about taking from your husband. If your husband gets a trach i would suggest getting a humidifier because that helped me a whole bunch. God bless you and your family. David
  • Artray
    Artray Member Posts: 24
    #8
    Dav1965 said:

    God bless
    Why would he not be able to speak? I had a feeding tube for about 8 months and a trach for about a month. I could speak with the trach in. I just had to cover it so i could talk. The reason i had the trach was because they cut off 95% of my tongue and replaced it with my thigh and it was so swollen that my tongue blocked my airway. I dont know about what they are talking about taking from your husband. If your husband gets a trach i would suggest getting a humidifier because that helped me a whole bunch. God bless you and your family. David

    Thanks for the info,
    Thanks for the info, David
    Reason he won't be able to speak is that the hypoglossal nerve controls the tongue, one on each side. 2 Years ago they removed the left side in a RND and now the cancer 'resides' on the nerve on the right side. In order to get clear margins they'll have to remove the nerve and for assurance they want to remove everything else. Without that nerve his tongue won't work.
    Had an inspiring afternoon though. Was online reading all about Roger Ebert who hasn't spoken or eaten in a few years due to cancer surgeries and it was very informative and inspiring...gave me a new avenue to look into as far as using a computer to translate what you type into speech! Found a new free app you can download onto an IPad (which we don't have...yet!) to do this...something to give us a lifeline for communication.
    I have to look for the humidifiers we bought 2 years ago when he first went thru treatment...they didn't do much help then but might be a great idea now!
    Thanks again...
  • yanski43
    yanski43 Member Posts: 3
    #9
    Where at in So Cal do you live and where are you being treated.

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