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Trigeminal Neuralgia treated with Radiation caused eye numbness

Posted by internationaltravel @internationaltravel, Feb 17 12:52am

After being treated with LINAC radiation (similar to gamma knife) for Trigeminal Neuralgia, my entire left side of my face is numb including my eye. This is ongoing for 2 years now. Has anyone found a treatment to improve or decrease the numbness from the damage that the radiation causes or found any type of treatment to possibly help regenerate the damaged nerve at the trigeminal nerve bundle? Any recommendations in dealing with this numbness that often times feels like pain itself?

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Mentor
John, Volunteer Mentor | @johnbishop | Feb 17 7:23am

Welcome @internationaltravel, I'm sorry to hear that you had the terrible side effects from your Trigeminal Neuralgia treatment. I'm pretty sure that you are not alone and hoping others with similar symptoms can offer some suggestions for relief. While you wait for other members to respond, I did a search of Connect and thought you might find other members with similar experience and learn what they have shared.

-- Search for "facial pain what helps" - https://connect.mayoclinic.org/search/discussions/?search=facial%20pain%20what%20helps
-- Search for "facial numbness what helps" - https://connect.mayoclinic.org/search/?search=facial+numbness+what+helps
-- Other Trigeminal Neuralgia discussions - https://connect.mayoclinic.org/search/discussions/?search=Trigeminal%20Neuralgia

Have you seen the Facial Pain Association website? - https://www.facepain.org/managing-facial-pain/treatments/

REPLY
dixieg | @dixieg | 1 day ago

I have experienced the same thing. I had Gamma Knife radiation for my trigeminal neuralgia 2 years ago and now the complete left side of my face is numb, and I lost taste on about 2/3 of the left side in my mouth. I have gone to 2 neurologists, had acupuncture and went to a pain doctor for an injection. Nothing has worked. I have switched between gabapentin and pregabalin to help me get through it, but they don't help the numbness. I would love to find a doctor who could help us!

REPLY
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