Trigeminal Neuralgia Support Group

Trigeminal neuralgia, or Tic Douloureux, is a neuropathic disorder of the trigeminal nerve that causes episodes of intense pain in the eyes, lips, nose, scalp, forehead, and jaw. Trigeminal neuralgia is considered by many to be among the most painful of conditions.

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Lemla 02/02/2020

BLOOD VESSEL WAS INDENTED INTO THE TRIGEMINAL NERVE AND UNDER IT. SURGEON PUT SPONGE BETWEEN THEM AND UNDER NERVE. AFTER 4 WEEKS POST SUR. PAIN RETURNED. PUT ME ON 50 HEAVY STERIODS THEN NOW WEANING ME DOWN ON THEM TIL FEB 7. THE PAIN IS BACK . CAN'T EAT HARDLY AND TALK MUCH. NOW TODAY I GOT HIT WITH A HORRIBLE PAIN THAT WOULDNT STOP IN MY HEAD. IT WAS THE WORSE EVER. IT WOULDN'T STOP. THE MRI SHOWED SPONGE IN PLACE AND NO SCAR TISSUE. I SEE SURGEON ON THE 7TH HES VERY PUZZLED NOW. HAS ANYONE HAD THIS HAPPEN AFTER SURGERY. I'M 66 AND IT HIT ME IN AUGUST. HAD TO EAT LAYING DOWN. COULDNT HANDLE THE WIND NO BRUSHING CEILING FANS OR HAIR DRYER

GMG 03/15/2020

I just had mvd on the 27th of Feb. The pain is returning and I am struggling to figure out my next move. I am still on all the preop meds because of the shocks. I can't return to work. If you have any success please let me know. Thanks.

Delivered 04/10/2020

Hi I just joined the group. Yes, I had the same thing happen. I had my surgery in June 2017 after being diagnosed in 2011. At time of surgery, I was 61. I was never pain free, in fact, 2 days after surgery my pain escalated. I was never able to get off of the 3 anti-seizure meds, so the following March, 2018 I had gamma knife surgery which was also unsuccessful. I have not heard of any testimonials which testify of long-term complete healing. I am of the opinion that no surgery is 100% effective. I just turned 64 last month and still have pain with high dosages of two medications. If I were to take more I would not be able to function at all.
However, as a woman of faith, I am very HOPEFUL that one day, I will be completely delivered of this dreaded disease. When I pray for my own healing and deliverance I also continue to pray for you and others who are burdened with this dreadful spirit of infirmity.
So keep the faith. At this time when we are living through a pandemic and aren't able to move about very much, we have a lot of time to pray for all individuals who are not only afflicted with COVID-19, but so many other sicknesses and diseases including TN.
So stay strong, prayerful and HOPEFUL! Help is on the way.

Denny29 10/24/2021

Hope your tn is getting g relief. I have bilateral tn1 and tn2 it started after a root canal. Can't take any medicines get sick from them. Are you going to try more surgerys?

Denny29 10/31/2021

So sorry to hear that let me know how you are doing.

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