Husband had neck dissection with tonsil removal on Tuesday.

GummieBear
GummieBear Member Posts: 5
edited March 2014 in Head and Neck Cancer #1
Hello everyone,

I am new to this site and wanted to share my story and get feedback.

My husband found a mass in his neck and after biopsy was told it was SCC. He had surgery on Tuesday and had it removed along with his tonsils. He is still in the hospital and is struggling with the pain management. We were told 2-3 day hospital stay and now its looking much longer as he is reliant on the pain meds thru the pump. Radiation will begin in about 5 weeks and we were told this throat pain will come back. We have no pathology as yet. He too is experiencing numbness of the right ear, slurred speech and his mouth appears to have some nerve issues on that side as well. Docs say that should come back in about 8-10 weeks. It's frightening and would welcome any advice on the best way for me to help him with this.

I welcome your story.

Thanks

Comments

  • delnative
    delnative Member Posts: 450 Member
    #2
    Explore this board
    Hi, GummieBear. Sorry your husband has to go through this. To put it bluntly, it sucks -- but the result is worth it.
    First, I'd urge you to delve deeply into this board. You'll find what will seem to be an overwhelming amount of information, and you'll be right. But information is a good thing.
    I had SCC of the right tonsil with one lymph node involved. I had the tonsil removed first, followed by two rounds of Cisplatin and 30 rads. Three months after that I had a modified radical neck dissection -- so what I've gone through is pretty close to what your hubby has been and will go through.
    After my neck dissection I had some numbness on the right side of my face and nerve issues on the right side of my mouth. Some of the numbness went away, some probably never will. I have a somewhat lopsided smile and can't open the right side of my mouth quite as wide as the left. It's annoying -- but a small price to pay to be cancer-free.
    As for throat pain, I'm sorry to say he ain't seen nothin' yet. Radiation is awfully tough on the throat, and it actually gets worse for a couple-few weeks after treatment ends because you continue to "cook." But then you get better.
    So don't be overwhelmed. Read this board, come here for advice and above all, be there for your husband. Be positive. This beast can be beaten.

    --Jim in Delaware
  • fishing_again
    fishing_again Member Posts: 7
    #3
    delnative said:

    Explore this board
    Hi, GummieBear. Sorry your husband has to go through this. To put it bluntly, it sucks -- but the result is worth it.
    First, I'd urge you to delve deeply into this board. You'll find what will seem to be an overwhelming amount of information, and you'll be right. But information is a good thing.
    I had SCC of the right tonsil with one lymph node involved. I had the tonsil removed first, followed by two rounds of Cisplatin and 30 rads. Three months after that I had a modified radical neck dissection -- so what I've gone through is pretty close to what your hubby has been and will go through.
    After my neck dissection I had some numbness on the right side of my face and nerve issues on the right side of my mouth. Some of the numbness went away, some probably never will. I have a somewhat lopsided smile and can't open the right side of my mouth quite as wide as the left. It's annoying -- but a small price to pay to be cancer-free.
    As for throat pain, I'm sorry to say he ain't seen nothin' yet. Radiation is awfully tough on the throat, and it actually gets worse for a couple-few weeks after treatment ends because you continue to "cook." But then you get better.
    So don't be overwhelmed. Read this board, come here for advice and above all, be there for your husband. Be positive. This beast can be beaten.

    --Jim in Delaware

    Mind Set
    We all decided as a family we were going to have to go through this extreamly unfortunate event and prepare( as best you can ) for the next 4-months , It,s painfull . Just take it day to day and as Jim says stay on this board or anywhere you can read about what to expect , the people in here have been through almost everything you will expierence ,
    I had my treatment 2- years ago and still come back to read and compair notes for upcomming Dr appointments . I have several residule problems but my wife and girls kept me alive more than anything .
    If your here your lucky , the information is priceless.
    Good luck my friend
  • stevenl
    stevenl Member Posts: 587
    #4
    great place
    Hi GummiBear,

    I am new to this site also,just a couple of weeks now. I had right neck dissection Friday, Jan 22nd. I am sorry that you are here but it is a great place for information and support.
    The tonsillectomy has been pretty hard on me too. Yesterday was my best day so far. I just made them let me come home from the hospital, should have stayed 1 or 2 more days. I went this past Friday and had 6 teeth pulled in preparation for radiation treatments. I must tell you to take Jim's advice and search this board. He and everyone else here have been most helpful and supportive to me. They help me with questions that I have and even with questions I should ask my doctors. I have slurred speech and limited movement on the right side of my face. All I can say to you is hang in there with him. Just love him, he needs it right now. The therapist gave me a sheet of paper with words that I am supposed to highly exaggerate while speaking each syllable. My wife and oldest daughter had a real good time making fun of me yesterday while I was doing this. I have not laughed so hard in a month. So hang in there, some good times are ahead and this will only last for "A SEASON". May God be with you and give you and your husband strength through this ordeal.

    STEVE
  • Scambuster
    Scambuster Member Posts: 973
    #5
    Times Ahead
    Hi GummieBear,

    I had my left Tonsil out (SCC) and was let go after 3 days but then rushed back due to the pain so don't get released too early. I was kept in another 4-5 days. It does hurt. It sounds like they cut into a few nerves. I do hope they recover but be aware that the Doctors are often prone to tell you things recover like: nerves, taste, saliva production, hair loss etc and it isn't always so.

    5 Weeks will allow time for recovery from surgery before the next phase of treatment. You have to consider whether to get a PEG before that starts. See the threads on these pages regarding getting a PEG.

    The pain is very bad during radiotherapy in the throat and swallowing foods etc becomes very difficult and at best he will cope with fluids (including protein shakes etc). It is a different kind of pain but quite bad and he will almost definitely be put on pain medications once the pains starts anytime from week 2-3 into treatment.

    I consulted with Naturopaths before and during treatment and found this to have been beneficial to me. Mine had experience working with Cancer patients going through treatment so they understood the effects etc of some supplements on the conventional treatments.

    Hope this info is of some use. It's' a hard road but you will get through it. My parting advice for when treatment is finished, the recovery takes time. Measure improvement by the week, not the day and watch for signs of depression and if it occurs, get help from your Doctors. it is common and can be rough, but is treatable.

    All the best to you and your Husband.

    Regds
    Scambuster
  • GummieBear
    GummieBear Member Posts: 5
    #6
    delnative said:

    Explore this board
    Hi, GummieBear. Sorry your husband has to go through this. To put it bluntly, it sucks -- but the result is worth it.
    First, I'd urge you to delve deeply into this board. You'll find what will seem to be an overwhelming amount of information, and you'll be right. But information is a good thing.
    I had SCC of the right tonsil with one lymph node involved. I had the tonsil removed first, followed by two rounds of Cisplatin and 30 rads. Three months after that I had a modified radical neck dissection -- so what I've gone through is pretty close to what your hubby has been and will go through.
    After my neck dissection I had some numbness on the right side of my face and nerve issues on the right side of my mouth. Some of the numbness went away, some probably never will. I have a somewhat lopsided smile and can't open the right side of my mouth quite as wide as the left. It's annoying -- but a small price to pay to be cancer-free.
    As for throat pain, I'm sorry to say he ain't seen nothin' yet. Radiation is awfully tough on the throat, and it actually gets worse for a couple-few weeks after treatment ends because you continue to "cook." But then you get better.
    So don't be overwhelmed. Read this board, come here for advice and above all, be there for your husband. Be positive. This beast can be beaten.

    --Jim in Delaware

    Thanks
    Thank you all for the info and support.
  • GummieBear
    GummieBear Member Posts: 5
    #7
    fishing_again said:

    Mind Set
    We all decided as a family we were going to have to go through this extreamly unfortunate event and prepare( as best you can ) for the next 4-months , It,s painfull . Just take it day to day and as Jim says stay on this board or anywhere you can read about what to expect , the people in here have been through almost everything you will expierence ,
    I had my treatment 2- years ago and still come back to read and compair notes for upcomming Dr appointments . I have several residule problems but my wife and girls kept me alive more than anything .
    If your here your lucky , the information is priceless.
    Good luck my friend

    We are home now, and taking
    We are home now, and taking it one day at a time. The moodswings and depression are very difficult and I feel unable to make him better or at least in a better frame of mind. I always hear that a positive attitude is crucial to recovery and I'm worried. He is not even close to the same positive outgoing person that he was. Obviously this is traumatic, but is part of this related to the pain meds and prednisone? Is there any good reading material out there that can help?

    Thanks
  • GummieBear
    GummieBear Member Posts: 5
    #8
    stevenl said:

    great place
    Hi GummiBear,

    I am new to this site also,just a couple of weeks now. I had right neck dissection Friday, Jan 22nd. I am sorry that you are here but it is a great place for information and support.
    The tonsillectomy has been pretty hard on me too. Yesterday was my best day so far. I just made them let me come home from the hospital, should have stayed 1 or 2 more days. I went this past Friday and had 6 teeth pulled in preparation for radiation treatments. I must tell you to take Jim's advice and search this board. He and everyone else here have been most helpful and supportive to me. They help me with questions that I have and even with questions I should ask my doctors. I have slurred speech and limited movement on the right side of my face. All I can say to you is hang in there with him. Just love him, he needs it right now. The therapist gave me a sheet of paper with words that I am supposed to highly exaggerate while speaking each syllable. My wife and oldest daughter had a real good time making fun of me yesterday while I was doing this. I have not laughed so hard in a month. So hang in there, some good times are ahead and this will only last for "A SEASON". May God be with you and give you and your husband strength through this ordeal.

    STEVE

    Thanks Steve, I am finding
    Thanks Steve, I am finding this a great resource. Everytime something comes up, I come back to this site and just read.
  • GummieBear
    GummieBear Member Posts: 5
    #9
    delnative said:

    Explore this board
    Hi, GummieBear. Sorry your husband has to go through this. To put it bluntly, it sucks -- but the result is worth it.
    First, I'd urge you to delve deeply into this board. You'll find what will seem to be an overwhelming amount of information, and you'll be right. But information is a good thing.
    I had SCC of the right tonsil with one lymph node involved. I had the tonsil removed first, followed by two rounds of Cisplatin and 30 rads. Three months after that I had a modified radical neck dissection -- so what I've gone through is pretty close to what your hubby has been and will go through.
    After my neck dissection I had some numbness on the right side of my face and nerve issues on the right side of my mouth. Some of the numbness went away, some probably never will. I have a somewhat lopsided smile and can't open the right side of my mouth quite as wide as the left. It's annoying -- but a small price to pay to be cancer-free.
    As for throat pain, I'm sorry to say he ain't seen nothin' yet. Radiation is awfully tough on the throat, and it actually gets worse for a couple-few weeks after treatment ends because you continue to "cook." But then you get better.
    So don't be overwhelmed. Read this board, come here for advice and above all, be there for your husband. Be positive. This beast can be beaten.

    --Jim in Delaware

    Delnative
    Can't imagine how the pain could be worse, he has suffered so much. Trying to keep his spirits up, but the bitterness and depression is difficult but am trying to stay positive.
  • ratface
    ratface Member Posts: 1,337 Member
    #10
    Scambuster said:

    Times Ahead
    Hi GummieBear,

    I had my left Tonsil out (SCC) and was let go after 3 days but then rushed back due to the pain so don't get released too early. I was kept in another 4-5 days. It does hurt. It sounds like they cut into a few nerves. I do hope they recover but be aware that the Doctors are often prone to tell you things recover like: nerves, taste, saliva production, hair loss etc and it isn't always so.

    5 Weeks will allow time for recovery from surgery before the next phase of treatment. You have to consider whether to get a PEG before that starts. See the threads on these pages regarding getting a PEG.

    The pain is very bad during radiotherapy in the throat and swallowing foods etc becomes very difficult and at best he will cope with fluids (including protein shakes etc). It is a different kind of pain but quite bad and he will almost definitely be put on pain medications once the pains starts anytime from week 2-3 into treatment.

    I consulted with Naturopaths before and during treatment and found this to have been beneficial to me. Mine had experience working with Cancer patients going through treatment so they understood the effects etc of some supplements on the conventional treatments.

    Hope this info is of some use. It's' a hard road but you will get through it. My parting advice for when treatment is finished, the recovery takes time. Measure improvement by the week, not the day and watch for signs of depression and if it occurs, get help from your Doctors. it is common and can be rough, but is treatable.

    All the best to you and your Husband.

    Regds
    Scambuster

    three major nerves there
    Three major nerves run through there and even moving them causes problems. The accessory nerve is related to movement of the arm, the hypoglossal controls the movement of the tongue, and the vagus nerve communicates with body funtions farther down the torso. All the symtoms you are describing would therefore be normal side effects. Just moving my accessory nerve has left my right arm very weak and I'm about six weeks post disection.

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