Pain after neck dissection

vsudd
vsudd Member Posts: 52
in Head and Neck Cancer #1
I am the care giver of a head and neck survivor. My husband has been battling this disease since 2006. He had a recurrence and had neck dissection in May 2010. It has been 10 months and he is in constant pain. On pain medication 24/7. Has anyone else had this experience and will it eventually go away. He is getting depressed. I don't know what to do next.
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Comments

  • KristynRuth86
    KristynRuth86 Member Posts: 140
    #2
    Hello
    I also had my neck dissection in May 2010, and though I still have a lot of tightness and some pain in my shoulders and back of my neck, for the most part it's ok and tolerable. I'm sure you've discussed his problem with his doctor, what does (s)he say? I'm so sorry to hear your poor hubby is still in so much pain :(
    Praying he gets well,
    -Kristyn
  • sweetblood22
    sweetblood22 Member Posts: 3,228
    #3
    KristynRuth86 said:

    Hello
    I also had my neck dissection in May 2010, and though I still have a lot of tightness and some pain in my shoulders and back of my neck, for the most part it's ok and tolerable. I'm sure you've discussed his problem with his doctor, what does (s)he say? I'm so sorry to hear your poor hubby is still in so much pain :(
    Praying he gets well,
    -Kristyn

    Hi vsudd. This is a subject
    Hi vsudd. This is a subject that comes up often. We just had a thread about pain and tightness and neck dissection issues. You might want to read thru for any ideas. Also I provided a link from the HNC Superthread about neck message that might help too. If you haven't perused the HNC Superthread, you may find other ideas that can help. It should be on the first page of this board.

    Welcome and good luck.



    THREAD ON NECK PAIN

    STRETCHING AND NECK MESSAGE INSTRUCTIONS
  • vsudd
    vsudd Member Posts: 52
    #4
    KristynRuth86 said:

    Hello
    I also had my neck dissection in May 2010, and though I still have a lot of tightness and some pain in my shoulders and back of my neck, for the most part it's ok and tolerable. I'm sure you've discussed his problem with his doctor, what does (s)he say? I'm so sorry to hear your poor hubby is still in so much pain :(
    Praying he gets well,
    -Kristyn

    Pain after neck dissection
    Yes, we have talked to surgeon and all they say is go to physical therapy and pain clinic. We went to physical therapy for about 6 months and the pain got so bad he had to quit. He is now taking pain Meds every 4 to 6 hours but doesn't like taking them because it makes him sleep and he would like to go to work or do something more productive. He is going to acupuncture and I think that is helping some. Maybe this is the start of getting over the surgery. Thank You for you reply. Glad you are doing well. Valerie
  • vsudd
    vsudd Member Posts: 52
    #5
    sweetblood22 said:

    Hi vsudd. This is a subject
    Hi vsudd. This is a subject that comes up often. We just had a thread about pain and tightness and neck dissection issues. You might want to read thru for any ideas. Also I provided a link from the HNC Superthread about neck message that might help too. If you haven't perused the HNC Superthread, you may find other ideas that can help. It should be on the first page of this board.

    Welcome and good luck.



    THREAD ON NECK PAIN

    STRETCHING AND NECK MESSAGE INSTRUCTIONS

    Thread on Neck pain
    I was very happy to find this . I have been looking for a site that has information on pain after neck dissection for months. My husbands was radical but I think now that I am getting more information from people that have had it its a great relief. I guess this is just normal and at some point he will start to improve. He is going to acupuncture and I think it might be helping and he will try the message. So happy I have found this site. Thank You, Valerie
  • Scambuster
    Scambuster Member Posts: 973
    #6
    vsudd said:

    Pain after neck dissection
    Yes, we have talked to surgeon and all they say is go to physical therapy and pain clinic. We went to physical therapy for about 6 months and the pain got so bad he had to quit. He is now taking pain Meds every 4 to 6 hours but doesn't like taking them because it makes him sleep and he would like to go to work or do something more productive. He is going to acupuncture and I think that is helping some. Maybe this is the start of getting over the surgery. Thank You for you reply. Glad you are doing well. Valerie

    Lyrica
    I was on Lyrica for over 1 year but only took it at night. it was for depression and pain but worked well from me. I have only a residual soreness in the neck from rads which is hardly noticable. I think Hondo had some success with Lyrica also. Maybe ask your Docs as it is used for nerve pain. Some poeple do not respond well, others do.

    Hope this is some use.
    Scam
  • vsudd
    vsudd Member Posts: 52
    #7
    Scambuster said:

    Lyrica
    I was on Lyrica for over 1 year but only took it at night. it was for depression and pain but worked well from me. I have only a residual soreness in the neck from rads which is hardly noticable. I think Hondo had some success with Lyrica also. Maybe ask your Docs as it is used for nerve pain. Some poeple do not respond well, others do.

    Hope this is some use.
    Scam

    Lyrica
    He tried Lyrica and he didn't like it . Made him jittery and could not sleep . It was a few weeks after his surgery , chemo, radiation so his system might have been out of wack . He has started on neurontin at night . That seems to help him sleep . Thank you for the info. Valerie
  • Hq18
    Hq18 Member Posts: 24
    #8
    I am sorry to hear that he
    I am sorry to hear that he has to deal with the painand pulling feeling for so long. I cannot help you/your husband with this but can relate. I had a total right-side neck dissection 4 weeks ago and it already has been driving me crazy. I asked the doctor how long I have to deal with this pain and costient tightness and she said approx 3 months. It is very difficult to deal with and then I have the nerve in my lip that has not came back yet so have to move my lip out of the way to eat, which is very annoying and then my shoulder that is in constient pain and sometimes does not do what I want it to do. I am sorry I could not help but it does help me to know that I am not the only one. Someone did recommend the other day about light tissue massage so may want to check into that :) I hope he does get better soon because can understand the depression too as I was dealing with that already I cannot imagine dealing with it for that long and hope I do not because I have also been trying to deal with my wife leaving me two weeks ago. So he is lucky to have you by his side and find these resources. I do hope the best for both of you!
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #9
    Welcome
    Nothing to add for the pain, many good people on here that have went through the dissection though and will chime in as the above have already.

    I just wanted to welcome you to the site and glad you found your way here.

    Like you said, it's a great site with tons of information, and awesome people....

    Welcome and Best to you and yours,
    John
  • steve b
    steve b Member Posts: 1
    #10
    Greetings,
    This is my first
    Greetings,
    This is my first post and, in addition to hopefully giving "vsuud" some ideas as to what to try, I am asking for help myself.
    First, I am hopefully doing this correctly. If not, someone let me know.
    I was diagnosed with tonsular cancer in February of 2008 and had neck dissection in August of that year, after radiation, chemo, etc. The constant pain comes from the neck dissection and so far I have tried the following, to no avail:
    Cymbalta, Lyrica, Fentanyl Patch, Acupuncture, Pepper Cream & Pepper Spray, Dextramethorphan via cough medicines, Lidocaine Patch, injections/facet joint injections, Methadone, Implant of Spinal Cord Stimulator, Acupuncture, Lyrica, Oxycontin/Oxycodone (up to 500mg daily)
    So... even though I am now resorting to theOxycontin/oxycodone on a daily basis (although some of the others may help those who see this), I was wondering if there was anything I have missed. Any suggestions are appreciated.
    Thanks,
    Steve
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #11
    steve b said:

    Greetings,
    This is my first
    Greetings,
    This is my first post and, in addition to hopefully giving "vsuud" some ideas as to what to try, I am asking for help myself.
    First, I am hopefully doing this correctly. If not, someone let me know.
    I was diagnosed with tonsular cancer in February of 2008 and had neck dissection in August of that year, after radiation, chemo, etc. The constant pain comes from the neck dissection and so far I have tried the following, to no avail:
    Cymbalta, Lyrica, Fentanyl Patch, Acupuncture, Pepper Cream & Pepper Spray, Dextramethorphan via cough medicines, Lidocaine Patch, injections/facet joint injections, Methadone, Implant of Spinal Cord Stimulator, Acupuncture, Lyrica, Oxycontin/Oxycodone (up to 500mg daily)
    So... even though I am now resorting to theOxycontin/oxycodone on a daily basis (although some of the others may help those who see this), I was wondering if there was anything I have missed. Any suggestions are appreciated.
    Thanks,
    Steve

    Welcome...
    Hi Steve, and welcome....

    While I can't offer you any advice concerning...(I didn't/don't) have your situation.

    I might suggest starting your own thread as this one is over or close to a year old.

    I'm sure there are several on here than can offer suggestions and exepreince...

    Best,
    John
  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    #12
    steve b said:

    Greetings,
    This is my first
    Greetings,
    This is my first post and, in addition to hopefully giving "vsuud" some ideas as to what to try, I am asking for help myself.
    First, I am hopefully doing this correctly. If not, someone let me know.
    I was diagnosed with tonsular cancer in February of 2008 and had neck dissection in August of that year, after radiation, chemo, etc. The constant pain comes from the neck dissection and so far I have tried the following, to no avail:
    Cymbalta, Lyrica, Fentanyl Patch, Acupuncture, Pepper Cream & Pepper Spray, Dextramethorphan via cough medicines, Lidocaine Patch, injections/facet joint injections, Methadone, Implant of Spinal Cord Stimulator, Acupuncture, Lyrica, Oxycontin/Oxycodone (up to 500mg daily)
    So... even though I am now resorting to theOxycontin/oxycodone on a daily basis (although some of the others may help those who see this), I was wondering if there was anything I have missed. Any suggestions are appreciated.
    Thanks,
    Steve

    Hi Steve
    I echo Skiffin's suggestion. Sounds like a pretty darned serious problem. Also sounds like you've already seen a number of people who may specialize in treating this type of problem. our situation will get lots more playing time if you post it as a seperate thread of its own. Could I ask you what specialists have you seen and which of these interventions have been done by whom?

    Wishing you better days.

    Pat
  • jeepman
    jeepman Member Posts: 109
    #13
    Abcess?
    I had the same problem. I was 3 months post neck dissection and the pain got worse and worse. This past new year's I was in the ER with an overnight super-swollen face/neck on the same side of my rads/dissection. Long story short- my ENT Dr thinks that my lymphatic system continued to drain after the dissection and my body did not absorb the fluid due to the damage from the rads. It eventually caused a huge abcess to form and things got really bad.
    I am recovering from surgery again on the same side as the neck dissection and praying that this is my last visit to the OR for this. Hope things get better for you, God bless.
  • tommyodavey
    tommyodavey Member Posts: 727 Member
    #14
    steve b said:

    Greetings,
    This is my first
    Greetings,
    This is my first post and, in addition to hopefully giving "vsuud" some ideas as to what to try, I am asking for help myself.
    First, I am hopefully doing this correctly. If not, someone let me know.
    I was diagnosed with tonsular cancer in February of 2008 and had neck dissection in August of that year, after radiation, chemo, etc. The constant pain comes from the neck dissection and so far I have tried the following, to no avail:
    Cymbalta, Lyrica, Fentanyl Patch, Acupuncture, Pepper Cream & Pepper Spray, Dextramethorphan via cough medicines, Lidocaine Patch, injections/facet joint injections, Methadone, Implant of Spinal Cord Stimulator, Acupuncture, Lyrica, Oxycontin/Oxycodone (up to 500mg daily)
    So... even though I am now resorting to theOxycontin/oxycodone on a daily basis (although some of the others may help those who see this), I was wondering if there was anything I have missed. Any suggestions are appreciated.
    Thanks,
    Steve

    New Thread
    Welcome Steve and I am going to suggest the same thing about starting a new thread. I just had a neck dissection on my right side and am curious to what pain you are talking about. Is it your arm, neck, shoulder, etc.

    My arm and shoulder hurt pretty bad but I am doing the exercises my doctor told me to do to avoid this pain. I'll find out more on Monday for my follow up.

    So please give us more details. Just start a new one that will be for you and your issues only.

    Once Again, Welcome!

    Tommy
  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    #15
    jeepman said:

    Abcess?
    I had the same problem. I was 3 months post neck dissection and the pain got worse and worse. This past new year's I was in the ER with an overnight super-swollen face/neck on the same side of my rads/dissection. Long story short- my ENT Dr thinks that my lymphatic system continued to drain after the dissection and my body did not absorb the fluid due to the damage from the rads. It eventually caused a huge abcess to form and things got really bad.
    I am recovering from surgery again on the same side as the neck dissection and praying that this is my last visit to the OR for this. Hope things get better for you, God bless.

    Hey
    how are you doing now?
  • Mhowe
    Mhowe Member Posts: 12
    #16
    need to find a pain dr and

    need to find a pain dr and have him give you shot on triggers. this helps me

  • Mhowe
    Mhowe Member Posts: 12
    edited October 2016 #17
    neck caner 1987 and 2003

    trigger point shots. and see a chiropractor. this should help.

  • Mhowe
    Mhowe Member Posts: 12
    edited October 2016 #18
    KristynRuth86 said:

    Hello
    I also had my neck dissection in May 2010, and though I still have a lot of tightness and some pain in my shoulders and back of my neck, for the most part it's ok and tolerable. I'm sure you've discussed his problem with his doctor, what does (s)he say? I'm so sorry to hear your poor hubby is still in so much pain :(
    Praying he gets well,
    -Kristyn

    pain after they cut you up

    in 1987 was the first surgey on left side. 2003 did other side of neck. due to long teram radication. Doctors don't know what to do. I had my back on fire one side winning. at the end of oct I will be starting my 30th year snice cancer. Doctors don't know what to do after cutting you up. find a pain doctor who will do tigger points shots. this will help you alot. Dont let doctors do a CT or MIR everytime you talk to them. I now have lung damage because of this. doctors have no idea of the body damage that is caused by never damage. so they want a CT or MIR. 29 years later lung damage. find a good Chiroprator. this will help keep the knife out of your neck.

    you will live in pain due to what they cut out. its tuff. good luck

    shoulder after time will start to move forward, this will cause more pain.

     

     

  • Mhowe
    Mhowe Member Posts: 12
    edited October 2016 #19
    Hq18 said:

    I am sorry to hear that he
    I am sorry to hear that he has to deal with the painand pulling feeling for so long. I cannot help you/your husband with this but can relate. I had a total right-side neck dissection 4 weeks ago and it already has been driving me crazy. I asked the doctor how long I have to deal with this pain and costient tightness and she said approx 3 months. It is very difficult to deal with and then I have the nerve in my lip that has not came back yet so have to move my lip out of the way to eat, which is very annoying and then my shoulder that is in constient pain and sometimes does not do what I want it to do. I am sorry I could not help but it does help me to know that I am not the only one. Someone did recommend the other day about light tissue massage so may want to check into that :) I hope he does get better soon because can understand the depression too as I was dealing with that already I cannot imagine dealing with it for that long and hope I do not because I have also been trying to deal with my wife leaving me two weeks ago. So he is lucky to have you by his side and find these resources. I do hope the best for both of you!

    29 years later

    after 29 years and many doctors later, they dont know what to do. Mine said see your family doctor about these problems. They have no idea. You will be having pain untill you die. I am living under that. Pain 24/7. You lose feeling in mouth, shoulders neck,  I had a left neck dissecton in 1987, In 2003 they did the right side, cut my jaw bone, to open the hood  and rebuild my throath with chest muscel. dry dry mouth, hard to eat only half of throath works. 18 months no soild food. but still on the right side of the dirt. good luck.

  • Mhowe
    Mhowe Member Posts: 12
    #20
    Scambuster said:

    Lyrica
    I was on Lyrica for over 1 year but only took it at night. it was for depression and pain but worked well from me. I have only a residual soreness in the neck from rads which is hardly noticable. I think Hondo had some success with Lyrica also. Maybe ask your Docs as it is used for nerve pain. Some poeple do not respond well, others do.

    Hope this is some use.
    Scam

    tigger point shots

    find a pain doctor who will do trigger point shots. they work

  • Mhowe
    Mhowe Member Posts: 12
    #21
    steve b said:

    Greetings,
    This is my first
    Greetings,
    This is my first post and, in addition to hopefully giving "vsuud" some ideas as to what to try, I am asking for help myself.
    First, I am hopefully doing this correctly. If not, someone let me know.
    I was diagnosed with tonsular cancer in February of 2008 and had neck dissection in August of that year, after radiation, chemo, etc. The constant pain comes from the neck dissection and so far I have tried the following, to no avail:
    Cymbalta, Lyrica, Fentanyl Patch, Acupuncture, Pepper Cream & Pepper Spray, Dextramethorphan via cough medicines, Lidocaine Patch, injections/facet joint injections, Methadone, Implant of Spinal Cord Stimulator, Acupuncture, Lyrica, Oxycontin/Oxycodone (up to 500mg daily)
    So... even though I am now resorting to theOxycontin/oxycodone on a daily basis (although some of the others may help those who see this), I was wondering if there was anything I have missed. Any suggestions are appreciated.
    Thanks,
    Steve

    pain pills

    They didnt work for me. I found out that I dont want my doctor to be my Methadone drug dealer. after 29 years I have learned to live with pain.

    Methadone helped me, but doctor one day said there is nothing wrong with you and walked out of the room. Trigger point shots work and so does

    chiropractic care.

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