Return Of TN after MVD

Well pain is back 11 years after MVD. On Trileptal now for a week and so far it’s working. Have a little pain on the upper teeth but not a problem. Hope I don’t need surgery again but that’s the way it seem to go.
Thanks, Mark


My husband has had two episodes of pain returning
Very scary
Both settled down
Pain for past year

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It took about two weeks of trileptal for me to be able to eat. Much happier now. :slight_smile: Mark

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Just wonderful news Mark

Does the compression grow back after the MVD?
Wishing you easier days.

I understand it is veins that cause the compression after mvd.

Did you have other symptoms before the TN pain came back? Like sensitivity?

I had MVD 3 years ago and I am starting to feel a lot of sensitivity in my teeth, jaw and neck. I had nerve compression in 9th and 10th cranial nerves originally so it was GN and in my neck. I’m worried about it coming back.

Yes, but hard to separate from numbness I received from a gamma knife procedure I had. I was getting very brief pain for months before all 3 branches started up again.

After my first , 3+ years later my pain came back. Different surgeon did the 2nd & said I had so much scar tissue he contemplated stopping but almost 13 years later glad he didn’t. I never asked if the scar tissue was the problem. Good luck Mark & glad the meds are helping. Trileptal was my savior along with Baclofin…

Guess I was lucky mine lasted 11 years. Hope the trileptal works for me for a long time. Hope you stay pain free.

I had a MVD in February of 2021. It was the best decision I have ever made. If mine comes back, I will definitely get another MVD. When I woke up in ICU, my pain was gone.
I had an excellent neurosurgeon Dr. Fukushima in Raleigh,NC. I plan to do the other side in 2022 hopefully with the same neurosurgeon. He has done 2,800 of MVD/Cranial surgery. I have not had any pain on that right side since February 2021. I am 70 year old and I did not have any complications afterward.

Great to hear, happy for you.

Hi Mark, My TN pain began to come back after several years too. I had enjoyed a few years of relative normal pain free living. Then, little by little, it began to take back my freedoms until the pain began to rule my life once again. I had an MVD 13 years ago, followed by stereotactic radiosurgery (SRS) five years later. SRS was the best help combined with, a couple years after that, Botox for migraines. Wow, I felt really normal, with very little break through pain from then on – until the past year. So, I returned for another round of SRS, the kind where I wear the halo to hold my head completely firm while getting the treatment. I have to say, I am feeling better and better every day and that the pain is already minimized. I am still being careful so as not to cause any problems until some time has passed. I don’t want to “Jinx” anything, hah! My best to you. Hope my reply gives you an idea of something you can try besides another MVD. I went to Dr. Rockhill, at the Gamma Knife Clinic, Harborview Hospital in Seattle, WA. Excellent Doctor!

The Gamma Knife made the left side of my face totally numb. I’m glad it worked for you but I will never do that again. Mark

How are you doing @Mark_Mo? I’m so sorry your pain returned, but I hope the Trileptal keeps things manageable. Sending good thoughts your way!

So sorry to read this. Why does the pain return after such an invasive operation? Awful.

Hu Linda99

did you end up doing th eother side? and are you stil lpain-free?

I am almost 10 years out. I am having a lot of facial pain on both sides now. It started after Covid in May. I was unable to open my mouth. The screw on my plate has lifted and touching that area triggers such pain. Do I go back to the surgeon? I’m getting Botox every 3 months because migraines are insane. Teeth hurt too. Ugh… where to go what to do. :weary::weary:

Sorry for your return of pain. Mine came back but oxcarbazepine controls it well. I know from experience this won’t last but am thankful for the respite. Doc says another gamma knife would be next step. Hope not. Mark

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I hope not too. Screwing that halo in our heads just causes arthritic pain later on.