Trigeminal Neuralgia (TN) -  Online Support Group

We are patients living with Trigeminal Neuralgia, here for your support.



A forum to discuss member's experiences with failed TN/ATN procedures and post-operative and post-procedure complications.


Location: subject-specific group
Members: 133
Latest Activity: May 17

Discussion Forum

post MVD, lots of pain and pressure NEED help please

Started by sara. Last reply by littlemoth Feb 8. 5 Replies

I had my MVD about 20 months ago  in Northern California.I woke up with this horrible pressure on the right side of my head where I had the MVD.Since my MVD pressure on the right of my head has not…Continue

Final Diagnosis...AD and I had no real idea it would happen to me.

Started by Jillian. Last reply by gigi Apr 23, 2015. 6 Replies

The verdict is in. The diagnosis slapped on the table, and then a pat on the butt as they escort you out of the office, all the while pointing to the Exit sign.I was there to review my 4D Ultrasound…Continue

Failed MVD surgery

Started by Kate. Last reply by So0o0Confused Oct 12, 2014. 3 Replies

I had MVD surgery4-2013 I have been in extreme pain since. Dr's have me on 1800mgs of Gabpentin. I went back to the Dr. who did the surgeruy for help. Last week. He said he cant help me. Said to…Continue

Padding grown to nerve?

Started by luvcats60. Last reply by luvcats60 Jul 23, 2014. 2 Replies

Has anyone went back after MVD and the Dr. not be able to replace the padding as it had grown to the nerve?If so does your Dr. think it maybe causing some of your facial pain?ThanksContinue

Comment Wall


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Comment by Vic Maidhof on February 23, 2016 at 9:26pm

Hello Everyone...It has been a long time since I have visited Living with TN website, about three years...Here is my story....  After discovering I had TN I elected to go the "non invasive route" and had Gamma Knife surgery in an attempt to tame the TN beast.  It was worthless and did not help ease pain at all. Then, over a period of a few years, I have three Glycerol surgery injections into the offending nerve area of my brain.....None of the above worked very well.....By 2010 I was desperate and elected to have MVD surgery performed at USC in Los Angeles....After surgery I was pain free for just six months but the TN came roaring back full force...I was so depressed and in so much pain I wanted to die..USC doctors told me they could not help me as the MVD had failed..They suggested that I have electric pulse wires placed into my face. These wires would be connected to some sort of battery that when an attack came I would press a button and it would reduce the pain attack..I am not joking..I declined of course...On November 29th 2012 I had another surgery, this time at Scripps in San Diego..."Cut the Nerve" surgery I call it...They dug into my brain and severed the bad nerve, they also discovered deeper down another damaged nerve and cut that one too. Lots of the damage may have been caused by the Gamma Knife surgery Im told....I had much advice before I decided to have the nerve actually severed, most of it totally negative and against doing such a terrible thing. But pain has no friends and I was desperate and knew I had nothing to lose....

So I had the surgery anyway and guess what ? I have my life back....It has been over THREE YEARS now and I have been totally pain free, with side affects, yes, but they are much easier to live with then TN.

Since surgery my life is in full speed ahead mode and I am pain free baby.....I also now enjoy four new grand kids, a wonderful wife who bought me a brand new diesel pickup truck that I can drive cause I have no more TN attacks...If you have any questions please feel free to ask me as I have traveled a long long TN road.

Comment by Edster on December 10, 2014 at 4:00pm

Hi everyone! I just want to say Happy Holidays ! As many of you know, I had a MVD on June 2013,and it was filled with many complications. Over all, the surgery helped immensely: however, the surgery  left me with some serious issues:  deaf in the right ear, AD, and serious vestibular problems. I need some feed back. A second Doctor reviewed my MRI and stated "the 8th  nerve is scarred so hearing is gone for ever, and the AD will get better" I would love some feedback on this prognosis

Comment by kwebster on October 11, 2014 at 2:29pm
My Atypical TN started with a Root Canal 2 years and 15 dentists later teeth pulled bridges put on bridges taken off and on and on finally oral surgeon said I think you have nerve damage if I pull all your teeth it wont go away mine is burning pain in lower V3 only but pain is 24/7 I have a St Jude PNS implanted in Dec 2011 however my root canal was done in April of 2009 never had this before the root canal endonodtist did 3 on same tooth couldnt figure out why I was in so much pain after 1st one my life is now a nightmare
Comment by Root canal damaged on October 10, 2014 at 11:57pm

How many of you with failed procedures had pain that started after a visit to a dentist?  There are too many doctors who are willing to treat dental injuries like the "god given" version of TN.  A dental injury where the trigeminal nerve is injured is technically Trigeminal Neuralgia but not the version that is helped by gamma knife, MVD, freezing, burning, cutting, etc....?  Those procedures are NOT for injuries to nerves.  They will make you worse...and as many doctors told me, you may get better for a year or more but the pain will eventually come back with a vengeance....and then you are really screwed.

Comment by Peter on July 5, 2014 at 9:24pm

Lou, I also have numbness on the right side of my face after gamma knife surgery on the TN nerve, I knew this would happen and I am getting used to the sensation. When I am busy I forget about it. However, I would rather have the numbness than the pain.

Comment by Lou on June 13, 2014 at 11:44am
I had Gamma last March in 2013. I received considerable relief, but oddly have an issue with numbness. It started with a spider web like feeling and now it totally encompasses my whole right side of my face. I feel so panicky. The neurosurgeon stated that this can happen in 30 percent of patients and put me on prednisone. My head feels like small creatures are setting up camp. The pressure in my ears is ridiculous. It feels like I have novacaine shot into the whole right side of my face into my nostril. Ugh. So tired of fighting. It's beginning to seem so surreal. I work out and teach and it's a real struggle. But I refuse to give into this. Does anyone have a suggestion for a med to help with the numbness? Help please..
Comment by JMUprof on March 6, 2014 at 4:32am

All---I had Gamma Knife back in June 2013 (9 months now).  I STILL CANNOT put pressure on the left side of the back of my head without having sharp, shooting pain penetrating from where the screw went in on the left side.  When this happens, it may be a couple hours before the pain goes away.  I cannot get comfortable at night because of course I like to sleep on my left side.  I've adjusted to falling asleep on my right side but will roll over while in my sleep.  Oftentimes this will wake me up  and I'll roll over or I'll wake up with a "headache" on the left side of my head.  To top this off, the left side is where I have my trigeminal pain.  Fun, fun. question is this:  I expected scalp pain immediately after Gamma Knife and BOY DID I HAVE PAIN AFTER.  But, have any of you fellow Gamma Knifers experienced or are still experiencing scalp pain months after surgery?  If so, do you or how do you find relief, if at all?  Any help/advice is much appreciated!  MANY THANKS!  I look forward to hearing back. 

Comment by Abby on November 14, 2013 at 8:12pm

Hi RueAnn...  Here's an idea copy and paste what you have written and send it to the Doctor.  In my way of thinking maybe you can let go and know he knows how you feel.  Send it by regular mail personal and confidential.  You never know maybe he will give you a call and whether you take it - that's your call. 

Hey my two cents..

Comment by RueAnn on November 14, 2013 at 12:21pm

I had a failed MVD in July for GN. Since then my neurosurgeon was saying he thought about trying a rhizotomy, but first I had to get my month-long ear infection under control. That was taken care of, and now I've called the NS numerous times to find out he's completely given up on me, has no ideas left for treating me, and best of all will not even return my calls. I was not looking forward to a rhizotomy by any means, but it was something to hope would help, much like the MVD. I've been trying to get answers from the NS office, and it seems since he has no way to help me he's just written me off. I was telling so many people this was the most considerate specialist I've ever had, and now I feel like a fool. He's called many times before, so I am hurt and angry that he cannot even be polite enough to call to say he can't help me. Have any of you had similar experiences? I am getting a referral to another NS, but am saddened by feeling like the NS was really trying to help and now since I'm a difficult case he's just given up. The pain continues to get worse every day, and it's been such an added stress trying to figure out why none of my calls were returned. I didn't choose to have GN, but I'm being treated like it's a disease I caught by my bad behavior.

Comment by Abby on November 7, 2013 at 4:09pm

Gail, this one might actually be short.  I am exhausted and may have figured out why.  I started Lamictal the beginning of October and 8 of 10 days waking up too early with a head ache.  So I am going to step down from it, because you know the last thing any one of us need is additional pain!  I can't believe it took me so long to put this together and so if I'm wrong no big deal.  It can be started again and like all the other stuff never sure if it was working anyway. 

I totally agree with rather have a Doc that would say hey I'm not sure then do anything!  What a mess.  The good news I sent Mr. Red Lawton a note and it opened up my eyes.  I'll get into that in the next note, because maybe I'll lay down.  Up too early and yes with a bad head ache.  Ready to get off this stuff and see what happens.  Pretty sure that's what it is as nothing other than that has changed.  Hope you have a good day and catch up with you soon!




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