Complex Regional Pain Syndrome 8 year after head and neck cancer treatment

Mavish
Mavish Member Posts: 93 Member
in Head and Neck Cancer #1

Hi everyone,

I am 8 years after tonsil cancer. About a year ago I started having occational face pain waking me up in the middle of yhe night. Then I lost sensation in my chin and lips on the right side. Pains become part of every day life. It is in my mouth, face,and gums. Burning, pins and needles, aches and stabing all at once. My pain is frequently 9/10. Especially at night. I dont sleep most of the nights.

Finally I saw a pain Doctor in the cancer center. They suspected complex regional pain sendrom ( CRPS) that I never heard of before. Potential reason is nerve damage due to surgery and or radiation treatment.

Last week they did a nerveblock. I did not have pain for 3 days and but it gradually came back in a week.

Does anyone experienced something similar? What treatment modalities did you try.

Comments

  • wbcgaruss
    wbcgaruss Member Posts: 2,464 Member
    #2

    Hi Mavish, sorry you are having this major issue with such pain.

    We all think when we are dealing with H&N cancer and going through aggressive treatment and recovery that is the worst it can get and once we get through it we will be in the clear with good scans and the rest of our life ahead of us

    Then something such as your case shows up and life post-treatment is changed again with a very unusual post-treatment issue and worst of all involving severe pain.

    I have an issue on the left side of my face, where my back molars come together as I chew I have to be careful biting down as I get a very sharp pain and soreness. Like my teeth are pinching the side of my gum and causing pain or something like a ulcer on your cheek that hurts as you chew.

    I had my ENT and dentist check it out, and they both say everything looks normal, and nothing unusual is seen. But I had lymph node surgery on that side and most of that side of my face is numb to feeling from my ear down to my chin. So my ENT says it is nerves causing it from my operation and the radiation I had. I am very Blessed though because it doesn't stay, I have it for several days and it goes away then comes back later, off and on.

    But my situation is nothing like what you are experiencei with such severe pain, I hope and pray they soon come up with a permanent solution for this it must be horrible to deal with.

    Wishing You The Best

    NEGU (Never Ever Give Up)

    Take Care, God Bless

    Russ

  • Mavish
    Mavish Member Posts: 93 Member
    #3

    Hi Russ,

    Thank you for replying. I hope mine will also start come and go in time being. I also learnt that some anti seizure medicine may help with pain (such as Pregabalin, Gabapentine). I was prescribed Pregabaline, I am at very low dose of 50 mg. It could go up to 600mg. I have another appointment in the pain clinic next week. I will continue to give updates, I hope no one experiences this, but if does, my experience maybe speed up their diadnosis. As many primary healthcare professionals are not aware of this kind of long term effects,it is taking to long to reach the rigth specialists. We have to advicate for ourselves.

    Thank you again, being there al the time and providing support.

    Take care and God bless you.

    NEGU

  • wbcgaruss
    wbcgaruss Member Posts: 2,464 Member
    #4

    Mavish Good to know you.

    Take Care, God Bless

    Russ

  • Mavish
    Mavish Member Posts: 93 Member
    #5

    Good to know you ,too

    God Bless

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