Trigeminal Neuralgia*

Posted by lamerex4 @lamerex4, Jun 23, 2016

My 92 year old father was diagnosed with Trigeminal Neuralgia more than a decade ago. For a long time Amitriptyline kept the ‘strikes’ at bay. He became symptomatic again last October. In March they did a Gamma Knife radiation treatment. This halted his symptoms for about 6 weeks. Two weeks ago he started having daily ‘strikes’ again. His PCP switched him from Amitriptyline to Lyrica. Now that he is weaned completely off the Amitriptyline and on the full dose of Lyrica he is having ‘strikes’ several times a day. The local neurosurgeons won’t consider surgery, but we are desperate. Any insights at all on any therapeutic modalities would be appreciated. Acupuncture was not effective.

Liked by lauren123, annamh

I would definitely recommend gamma knife. I had a hard time functioning because of the pain. I really don't remember having the gamma knife procedure. I was sedated enough to move or answer questions but I don't remember any of it. I had a halo screwed to my head in 4 places. I don't remember the doctor putting the halo on. At the end of my procedure I do remember the nurse taking the halo off. I had a severe headache for a little while maybe an hour. My son took me home and I just had to take it easy a few days. I highly recommend having this done. It has taken about two years for the full effect of the radiation to do it its job. My pain is minimal compared to what I had.

Liked by Lisa Lucier

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My brother has suffered from this extremely painful facial/brain disorder for years. He went through surgery approx 6 years ago and has managed quite well UNTIL NOW…the excruciating pain has returned and he’s about to give up says he will not live this way again! I’m desperately searching for answers and options for him. Anyone with information would be most helpful. thanks

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@paulamacmorgan

My brother has suffered from this extremely painful facial/brain disorder for years. He went through surgery approx 6 years ago and has managed quite well UNTIL NOW…the excruciating pain has returned and he’s about to give up says he will not live this way again! I’m desperately searching for answers and options for him. Anyone with information would be most helpful. thanks

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Hello @paulamacmorgan, welcome to Connect. I see you also started a conversation wondering if anyone had been treated for this condition at Mayo Clinic. Has your brother received an appointment already at Mayo Clinic, or are you still in the process of gathering information and hoping to seek an appointment? If you are comfortable sharing, what surgery initially helped your brother? Here is a bit of information on how Mayo Clinic treats trigeminal neuralgia, https://www.mayoclinic.org/diseases-conditions/trigeminal-neuralgia/diagnosis-treatment/drc-20353347. Has your brother tried some of these treatments other than surgery?

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@paulamacmorgan

My brother has suffered from this extremely painful facial/brain disorder for years. He went through surgery approx 6 years ago and has managed quite well UNTIL NOW…the excruciating pain has returned and he’s about to give up says he will not live this way again! I’m desperately searching for answers and options for him. Anyone with information would be most helpful. thanks

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@paulamacmorgan – I'd like to add my welcome to Mayo Clinic Connect. @jennheadlee @vickylynn @kim_o @annpie88 @jmjlove @carmelo1morrone may have some suggestions for you and your brother from their own or a loved one's experiences about controlling the pain from trigeminal neuralgia. Perhaps they can also share whether they or anyone they are aware of has had surgery for this condition and then had it come back to be very painful again.

How has this weekend been painwise for your brother, paulamacmorgan?

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Can someone please tell me their experience and /or success at Mayo to treat Trigeminal Neuralgia as I have a brother with a severe case and I’m looking for help

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@paulamacmorgan

Can someone please tell me their experience and /or success at Mayo to treat Trigeminal Neuralgia as I have a brother with a severe case and I’m looking for help

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Hi, @paulamacmorgan – I imagine the trigeminal neuralgia is really painful for your brother. I wanted to let you know I moved your post here to where you were posting before so that you can interact with others or their loved ones going through similar situations. If you click on VIEW & REPLY in your email notification, you will be taken to the full discussion on this topic and be able to read what others have experienced and treatment they've pursued for trigeminal neuralgia.

Hoping that @johnbishop and also @jenniferhunter will let you know about their consult and treatment at Mayo Clinic.

Has your brother had the opportunity to meet with the surgeon who did his previous trigeminal neuralgia surgery to see what they recommend? If so, what did they say about the symptoms returning?

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Hi, @paulamacmorgan – I've been a patient at Mayo Clinic Rochester Campus for many years and have always had excellent care and treatment. The different specialties do a great job of working together to diagnose and treat their patients. I was diagnosed with lymphedema at Rochester and during that time the cardiovascular doctor asked me how I was sleeping due to me answer some questions he had. He then sent me to sleep medicine for some tests and eventually an overnight sleep test where I was also diagnosed with severe obstructive sleep apnea. Mayo is a great choice for treating trigeminal neuralgia. Here are a few links that you may find helpful.

Trigeminial neuralgia care at Mayo Clinic — https://www.mayoclinic.org/diseases-conditions/trigeminal-neuralgia/care-at-mayo-clinic/mac-20353351
Doctors who treat this condition — https://www.mayoclinic.org/diseases-conditions/trigeminal-neuralgia/doctors-departments/ddc-20353350

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Hi all, as social interaction is limited with the COVID-19 virus and many members have concerns they'd like to discuss, just wanted to make you aware that Mayo Clinic Connect has opened up a brand new group dedicated to COVID-19, https://connect.mayoclinic.org/group/covid-19/. The hope is to help members connect and cope during these unprecedented times.

Please follow the COVID-19 group by clicking on +Follow, look at the discussions there and participate. You are also welcome to start a new discussion on any COVID-19-related topic you'd like to discuss.

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