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HELP!

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My Mother came all the way from California in 1996, to live with me in Pennsylvania. Due to horrific pain from Trigeminal Neuralgia she was unable to continue working. She has tried everything that we can find out there from Microvascular Decompression surgery, (which failed miserbly and almost cost her her life) to dangeroulsy high doses of Tegrotol. She has tried just about everything except the Gamma knife or permenant destruction of the actual nerve itself. She had Botox injections almost 2 years ago and up until now was virtually pain free. Unfortunaltely this evasive and deblitating disease is back with a vengence and her pain level is about a 9 right now. She will be 70 years old in July and has high blood pressure. I am extremely worried that she is going to have a heart attack or stroke due to the anxiety and stress of trying to cope with the unforgiving relentless pain she is constantly having to endure. She can barely eat and is rapidly loosing weight. When she first had the Botox Shot she was in California visiting my sister. I have found it almost impossible to find anyone on the East Coast that will treat her with this type of pain manegment. Any suggestions or advice would be deeply appreciated. Kerry

Explore topics in this discussion:

Anxiety Surgery Pain Heart attack Stroke Stress Trigeminal neuralgia

1 reply

Kerry -- i am so sorry to hear about your Mother. I have trigeminal neurOPATHY and get Botox treatments -- they have saved my life! I wrote a reply to your post here:

https://www.inspire.com/groups/rare-disease/discussion/trigeminal-neuropath y/?msg_activity=reply_posted&page=last&cmnt_id=236300

there are neurologists on the East Coast that do this! I go to Manhattan NYC for them... check out Columbia Presbyterian Hospital for neurologists specializing in this!!

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