Crazy head pain

handl1983
handl1983 Member Posts: 37
edited March 2014 in Head and Neck Cancer #1
Hi Everyone!

Just wondering if any of you who have had neck dissections and radiation have suffered with severe head pain? My husband Herb has officially been "cleared" of cancer for now, but this head pain has popped up aprox. 3 weeks ago. He can only sit up for 10-15 minutes and then has to go lay down because of the pain. His Dr's tell him that is due to nerve damage and that he should see the pain management team. We now have a cupboard full of drugs that he cannot tolerate- they make him crazy! He is twitching, having halucinations and feels hazy. Who wants to live like this???? Any suggestions?? Thanks everyone, for your time and advice. Lori


PS his neck dissection was in July, 09 and his rads ended Dec 3, 09

Comments

  • Hondo
    Hondo Member Posts: 6,636 Member
    #2
    Hi Lori


    I did not have neck dissections but I do have the head pains after radiation treatment. I too have some nerve damage in the neck but mostly affecting the jaw with is also the cause of my head pain. My head pain don’t seam as bad as Herd’s, but I do have problems taking anything for it, seams like to only thing that works for me is Aleve liquid Gel caps.

    Take care
  • Scambuster
    Scambuster Member Posts: 973
    #3
    Hondo said:

    Hi Lori


    I did not have neck dissections but I do have the head pains after radiation treatment. I too have some nerve damage in the neck but mostly affecting the jaw with is also the cause of my head pain. My head pain don’t seam as bad as Herd’s, but I do have problems taking anything for it, seams like to only thing that works for me is Aleve liquid Gel caps.

    Take care

    Milder shooting pains
    Hi Lori, I had mild shooting pains up the sides of my head which started a few months after treatment. I was put on Lyrica which is a broad function prescription for pain and other things. They did subside. It could be nerve damage and hopefully will heal over time.

    It does sound quite severe from what you say so I would suggest getting a second opinion from a Doctor who has dealt with Cancer patients. It has become very apparent that many doctors really don't have a handle on 'Post Rads/Chemo' symptoms. Hopefully someone else comes on here with some direction for you.

    Best wishes
    Scambsuter
  • MarineE5
    MarineE5 Member Posts: 1,034 Member
    #4
    Question for you
    Hello Handl1983,

    I have a small question for you, is your husband's face and neck puffy and swollen? If so, he could be suffering from delayed lymphodema.

    Also as everyone one above has mentioned, it could also be some nerve damage. Our heads weigh roughly 10-15 pounds, and if your husband seems to do better lying down, the weight might be pinching a nerve or neck disc when he is sitting up. His neck muscles might be weak and they tighten up after a short period. Has he tried stretching exercises for his neck? Does he massage the neck and face areas? to work the muscles at all ?

    I bring this up because of the neck disection as I has a radical neck disection and the SCM muscle removed which in turn weakened my right side. I went for physical therapy to help build my strength back up.

    My Best to Both of You and Everyone Here
  • handl1983
    handl1983 Member Posts: 37
    #5
    Scambuster said:

    Milder shooting pains
    Hi Lori, I had mild shooting pains up the sides of my head which started a few months after treatment. I was put on Lyrica which is a broad function prescription for pain and other things. They did subside. It could be nerve damage and hopefully will heal over time.

    It does sound quite severe from what you say so I would suggest getting a second opinion from a Doctor who has dealt with Cancer patients. It has become very apparent that many doctors really don't have a handle on 'Post Rads/Chemo' symptoms. Hopefully someone else comes on here with some direction for you.

    Best wishes
    Scambsuter

    2nd opinion
    Hello!! Thanks for the advice- I booked him an appt. with a neurologist who isnt connected with his cancer hospital. We go see him on Wed. I dont know if they can do anything, but we have to try. The hospital that he has gone to for treatment this whole year is a research hospital, and they receive grants for all of the patients they "cure."
    Well, that leaves alot to be desired!! I wish they would work on post treatment symptoms, because its like hitting your head against a wall to get a Dr. to help- they did what they know, and the rest is in limbo somewhere!! I dont mean to be negative, but geez-louise- if this were someone in their family, I bet they would be searching..... Oh well.

    Thanks again for the reply. Hope all is well with you!!! Lori
  • handl1983
    handl1983 Member Posts: 37
    #6
    MarineE5 said:

    Question for you
    Hello Handl1983,

    I have a small question for you, is your husband's face and neck puffy and swollen? If so, he could be suffering from delayed lymphodema.

    Also as everyone one above has mentioned, it could also be some nerve damage. Our heads weigh roughly 10-15 pounds, and if your husband seems to do better lying down, the weight might be pinching a nerve or neck disc when he is sitting up. His neck muscles might be weak and they tighten up after a short period. Has he tried stretching exercises for his neck? Does he massage the neck and face areas? to work the muscles at all ?

    I bring this up because of the neck disection as I has a radical neck disection and the SCM muscle removed which in turn weakened my right side. I went for physical therapy to help build my strength back up.

    My Best to Both of You and Everyone Here

    crazy head pain
    Hi!!
    thanks for your reply. No, his face and neck are not puffy at all. No physical therapy has been recommended, but as I told Scambuster, we have an appointment with a neurologist on Wed. who is not connected to his cancer treatment hospital.

    Hopefully, he can get some relief- I feel so bad for him!!

    I will keep you posted, and again, thanks for writing!!! Lori
  • handl1983
    handl1983 Member Posts: 37
    #7
    Hondo said:

    Hi Lori


    I did not have neck dissections but I do have the head pains after radiation treatment. I too have some nerve damage in the neck but mostly affecting the jaw with is also the cause of my head pain. My head pain don’t seam as bad as Herd’s, but I do have problems taking anything for it, seams like to only thing that works for me is Aleve liquid Gel caps.

    Take care

    crazy head pain
    Hi Hondo!
    Thanks for your time to write back- He has taken everything but the kitchen sink for this, with no relief... and the drugs that pain mgmt. sends home are crazy! I left for work this morning and took his keys with me because he told me that he had to get the hippo out of the pool and dig a well to put out the fire in the fire pit! Yikes!!! No halucinations there!!!! I was afraid of where he might go!! LOL

    He has taken Aleve, and it helped a little bit- I am going to try Excederin Migraine tonight- who knows!! We have an appt. with a neurologist on Wed. Hopefully he can help.

    I will keep in touch, and I hope all is well with you and yours!!

    God Bless,
    Lori
  • tonyanddenise
    tonyanddenise Member Posts: 70
    #8
    MarineE5 said:

    Question for you
    Hello Handl1983,

    I have a small question for you, is your husband's face and neck puffy and swollen? If so, he could be suffering from delayed lymphodema.

    Also as everyone one above has mentioned, it could also be some nerve damage. Our heads weigh roughly 10-15 pounds, and if your husband seems to do better lying down, the weight might be pinching a nerve or neck disc when he is sitting up. His neck muscles might be weak and they tighten up after a short period. Has he tried stretching exercises for his neck? Does he massage the neck and face areas? to work the muscles at all ?

    I bring this up because of the neck disection as I has a radical neck disection and the SCM muscle removed which in turn weakened my right side. I went for physical therapy to help build my strength back up.

    My Best to Both of You and Everyone Here

    The SCM muscle.
    The SCM muscle. Ditto. How much PT? is it any where near what it was?
  • santa6
    santa6 Member Posts: 29
    #9
    Lhermitte's ?
    I have bouts of significant pain in the back of my head. I had radiation and chemo for neck cancer with unknown primary source so the treatment was extensive. Also had neck dissection for one cancerous lymph node and 15 surrounding nodes which were all clear.

    I noticed when I was five months out of treatment that if I tip my chin down toward my chest, I go completely numb below the waste. Then the headaches started. Saw my radiation oncologist about it and he knew immediately it was Lhermitte's Syndrome. I believe he said it is caused by minor radiation damage to the brain stem. It is also alleged to be self-resolving within six months.

    Hope that helps.

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