1. < Brain & Nervous System

Trigeminal neuritis/neuralgia treatment: What works for you?

Posted by jenkob @jenkob, Aug 19, 2012

I wanted to share my experience with this condition...
Severe but treatable pain in the face and head.

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oldwal | @oldwal | Jun 4, 2022
In reply to @aderaw97 "Where did you do the gamma knife? I am also suffering with no medications working these..." + (show)
@aderaw97

Where did you do the gamma knife? I am also suffering with no medications working these days. I am considering the surgical treatments.
Thanks.
Andre.

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I dont know about the Gamma knife but I have had three treatments by Canadian surgeons using Percutaneous Rhizotomy on my Trigeminal. I had attacks daily and was poorly controlled by drugs including Gabapentin. Results were, first treatment 1.5 years of complete remission. No 2 failed but third has resuled in almost 3 years ofremission and going strong. Yes the facial numbness is there but a lot more livable with than the origional pain.
I am surprised that Rhizotomy is not mentioned more often in this forum.

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1 reply
aderaw97 | @aderaw97 | Jun 4, 2022
In reply to @oldwal "I dont know about the Gamma knife but I have had three treatments by Canadian surgeons..." + (show)
@oldwal

I dont know about the Gamma knife but I have had three treatments by Canadian surgeons using Percutaneous Rhizotomy on my Trigeminal. I had attacks daily and was poorly controlled by drugs including Gabapentin. Results were, first treatment 1.5 years of complete remission. No 2 failed but third has resuled in almost 3 years ofremission and going strong. Yes the facial numbness is there but a lot more livable with than the origional pain.
I am surprised that Rhizotomy is not mentioned more often in this forum.

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Thank you so much for replying. If you don't mind how much you paid for those procedures? Here in the US, most insurances don't cover TN procedures since they call them "experimental procedures or treatments ".
Also, was your procedure PGR or PCR?

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1 reply
oldwal | @oldwal | Jun 5, 2022
In reply to @aderaw97 "Thank you so much for replying. If you don't mind how much you paid for those..." + (show)
@aderaw97

Thank you so much for replying. If you don't mind how much you paid for those procedures? Here in the US, most insurances don't cover TN procedures since they call them "experimental procedures or treatments ".
Also, was your procedure PGR or PCR?

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I did not have to pay anything as provincial health plan and my insurance covered it all. I did have travelling expenses which I was able to claim partially on my income tax . Of course I had to wait a while before getting treatment at first. Third time I was transferred to the ooperating hospital from our local hospital emergancy dept where I had gone to with intractable pain.

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1 reply
oldwal | @oldwal | Jul 24 12:44pm
In reply to @oldwal "I did not have to pay anything as provincial health plan and my insurance covered it..." + (show)
@oldwal

I did not have to pay anything as provincial health plan and my insurance covered it all. I did have travelling expenses which I was able to claim partially on my income tax . Of course I had to wait a while before getting treatment at first. Third time I was transferred to the ooperating hospital from our local hospital emergancy dept where I had gone to with intractable pain.

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Another 2 years on and still symptom free. Very occasionally I get a whiff of what used to be the precursor of an attack but it disappears right away. Have far more pressing medical problems trying to keep me from my 90th .

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motherslove65 | @motherslove65 | Oct 22 2:37pm
In reply to @shelley701 "I have an unusual case of trigeminal neuralgia. I tried most of the medications and all..." + (show)
@shelley701

I have an unusual case of trigeminal neuralgia. I tried most of the medications and all failed. I recently had microvascular decompression surgery which has relieved the deep, excruciating pain but I still have sinus fullness and pressure on the left side of my nose and into the maxillary sinus area. I also experience discomfort around in in my left eye. I have also had three sinus surgeries and my sinuses are now normal. I'm not sure if what I am experiencing is trigeminal or if it is something else.

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5 years, I thought it was anxiety and I just wanted a name put on it. The cardiologist said good news you dont' have afib but i d have atrial trachycardia.

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1 reply
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Oct 22 3:04pm
In reply to @motherslove65 "5 years, I thought it was anxiety and I just wanted a name put on it...." + (show)
@motherslove65

5 years, I thought it was anxiety and I just wanted a name put on it. The cardiologist said good news you dont' have afib but i d have atrial trachycardia.

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Hello @maotherslove65 and welcome to Mayo Connect. It sounds like you are relieved to know what your problem has been for several years. We have several discussions on this topic in the Heart Rhythm support group. Here is a link to many of those discussions. I'd encourage you to read them and ask questions or make comments to those by clicking on "Reply" below the comment.
https://connect.mayoclinic.org/group/heart-rhythm-conditions/?search=atrial+trachycardia#discussion-listview
Has your cardiologist suggested any treatment for the atrial tachycardia?

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