Trigeminal Neuralgia - Anyone heard of this?

tomb247
tomb247 Member Posts: 54
in Head and Neck Cancer #1

I do not post much but appreciate the info from all of you. I am 2 years NED but it seems like the radiation is the gift that keeps on giving. 
Has anyone heard of Trigeminal neuralgia? I am at the beginning of the diagnosis ride to figure out if this is causing my facial pain. Came on 3 weeks ago and I have been to dentist and will go to ENT in 2 weeks after my 2 year scans are complete. All of my docs are specialist in HNC so feel comfortable with their direction.
Just want to see how common this is or if anyone has dealt with this. Thanks

Comments

  • Weathering
    Weathering Member Posts: 7
    #2
    For complete diagnosis you

    For complete diagnosis you will want an MRI of the soft tissues of the face/neck (this will show that the nerve is intact with inflammation causing the issue or has been severed). An EMG would also show if the nerve signal is getting through to the muscle.

    I have hypoglossal nerve damager (left side of tongue), mandibular branch of facial nerve (lower left lip), and a third nerve damage which I forget the name (left jaw line). Mine if from a surgery which was expanded to include the submandibular gland while taking out melanoma metastices in the neck. The submandibular gland is where these nerves were impacted - but at only 14 weeks post-surgery I am still hopeful of full healing resolution.

  • tomb247
    tomb247 Member Posts: 54
    #3
    Weathering said:

    For complete diagnosis you

    For complete diagnosis you will want an MRI of the soft tissues of the face/neck (this will show that the nerve is intact with inflammation causing the issue or has been severed). An EMG would also show if the nerve signal is getting through to the muscle.

    I have hypoglossal nerve damager (left side of tongue), mandibular branch of facial nerve (lower left lip), and a third nerve damage which I forget the name (left jaw line). Mine if from a surgery which was expanded to include the submandibular gland while taking out melanoma metastices in the neck. The submandibular gland is where these nerves were impacted - but at only 14 weeks post-surgery I am still hopeful of full healing resolution.

    Thank you for the feedback.

    Thank you for the feedback.

    2 year post treatment CT Scans next week. If all looks good, ENT will send me to Neurologist.

    I'll keep you all posted.

     

  • Lucky933
    Lucky933 Member Posts: 6
    #4
    Yes, facial pain after radiation

    I am one year post my radiation treatment for ACC. About 2 mouths after radiation treatment has finished, I developed this facial pain on the same side where I had the radiation. The pain can be intense from my left face down to my jaw and teeth and my tongue and lower lip, but only last for about a minute or less, but can happen many times during a day. My one year MRI showed some abnormal enhencement on the trigeminal nerve. The doctor is not sure if this is a tumor spreading to the nerve, or it is just some inflammation caused by the radiation. They will monitor it with another MRI in 3 months. I hope this is not the tumor coming back. If it is, the doctor told me the gamma knife would be the option. I have tried some medication at the same time but did not help. I am hoping this is just a nerve damage from the radiation treatment and I will be able to find some medicaton to manage the pain. Please let me know how yours go. Good luck!

  • tomb247
    tomb247 Member Posts: 54
    #5
    Lucky933 said:

    Yes, facial pain after radiation

    I am one year post my radiation treatment for ACC. About 2 mouths after radiation treatment has finished, I developed this facial pain on the same side where I had the radiation. The pain can be intense from my left face down to my jaw and teeth and my tongue and lower lip, but only last for about a minute or less, but can happen many times during a day. My one year MRI showed some abnormal enhencement on the trigeminal nerve. The doctor is not sure if this is a tumor spreading to the nerve, or it is just some inflammation caused by the radiation. They will monitor it with another MRI in 3 months. I hope this is not the tumor coming back. If it is, the doctor told me the gamma knife would be the option. I have tried some medication at the same time but did not help. I am hoping this is just a nerve damage from the radiation treatment and I will be able to find some medicaton to manage the pain. Please let me know how yours go. Good luck!

    Thank you. WIll do and good

    Thank you. WIll do and good luck to you also.


    Tom

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