After MVD surgery Trigeminal Neuralgia: How are you doing?

Posted by smurfieallena @smurfieallena, Mar 13, 2021

I had MVD surgery for Trigeminal Neuralgia in October of 2020 and since surgery, I am having a hard time processing new memories. I can remember maybe 30-40% since about a week before surgery. For example, I've had a friend come visit about 6 times, I only remember about 2 of those times. And not the whole time he was here. I remember blips of the 2 times. It's like I'm watching my life in a movie and parts are missing. My ex husband came to check on me and I have no recollection of him being here. I was in the hospital for two days and can't remember any of it. I'm missing big chunks of these last 5 months and it's not getting any better. Has anyone else experienced this? The neurosurgeon only did one follow up visit and it was a phone call so he was no help. My neurologist hasn't been much help. I don't know what to do.

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@earringsbylulu11

After having a MVD operation for TN I am in worse pain. I have been to many specialist and now I have Trigeminal neuropathy probably because the Trigeminal nerve was damaged. Wondering if anyone else has the same issue

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I was worse from the very moment I woke up in recovery. I had terrible eye pain and the tics I had before were like hemifacial spasms. Now the skin has sunken over my craniotomy site and is very painful. I have chronic terrible headaches that feel like brain freeze.

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Ten years ago, a co-worker — from when I was working in PA — had the MVD procedure. Within three months, he was again experiencing the severe pain on his affected side that the surgery was intended to correct.

Think we've all heard this same story repeated so many times. Truly a sad situation… this pain can be excruciating, unrelenting, and a life-changer!

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I had a PT working on me for spinal rehab. She told me she would crawl on her hands and knees to her car in the parking lot, and still not let any surgeon touch her back.

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I had two MVDs each one gave me eight months of complete relief but on the eight month the pain would be excruciating with facial spasms that caused me to not be able to speak.
Then I had gamma knife surgery and the pain relief lasted ten months but horrible pain returned with the same, the electric drill and the tics and not being able to speak
A pain pump with the med dilaudid is helping so far it’s been 16 months
The relief is not 100% but it I can live with itkmm

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@kenyalama

I had two MVDs each one gave me eight months of complete relief but on the eight month the pain would be excruciating with facial spasms that caused me to not be able to speak.
Then I had gamma knife surgery and the pain relief lasted ten months but horrible pain returned with the same, the electric drill and the tics and not being able to speak
A pain pump with the med dilaudid is helping so far it’s been 16 months
The relief is not 100% but it I can live with itkmm

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A year and 3 months ago I had my MVD. I’m living in hell. I’ve been to Mayo Clinic plus many other hospitals and I still haven’t gotten any relief. Every day my incision area jaw and ear Pain is devastating. I have no plan anymore, where to go I want to do. I medicate and it’s still not enough. If I knew this operation was going to turn out like this I would’ve never gotten it.

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@earringsbylulu11

A year and 3 months ago I had my MVD. I’m living in hell. I’ve been to Mayo Clinic plus many other hospitals and I still haven’t gotten any relief. Every day my incision area jaw and ear Pain is devastating. I have no plan anymore, where to go I want to do. I medicate and it’s still not enough. If I knew this operation was going to turn out like this I would’ve never gotten it.

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I am so very sorry to learn about your situation with TN
Mine is the least common: the oftalmic brunch but o also get the electric shocks and the billion pins and needles attacks in my cheek and lip.
I only got relief to the point of being able to tolerate the attacks, with a pain pump that delivers a potent pain killer called dilaudid
The dose is minimal because it goes directly into my brain through a catheter
Would you be able to at least ask your doctors if that wouid be an option for you?
In my case my neurosurgeon decided on it after three admissions through the ER with a pain so severe that I was given an IV immediately and admitted immediately
Good luck wishes from my heart !

Sent from my iPhone

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Lulu — Thank you for posting your experience. Can' t imagine going through it all. Deeply sorry all the interventions may have made the situation worse. Wishing and hoping this… somehow… improves for you.

/LarryG

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@earringsbylulu11

After having a MVD operation for TN I am in worse pain. I have been to many specialist and now I have Trigeminal neuropathy probably because the Trigeminal nerve was damaged. Wondering if anyone else has the same issue

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Same experience. I am 3 months post MVD and hints of pain started about 3 weeks ago. Last night, and for the second time in a week, I was jolted awake by severe episodes. Surgeon says last Friday, “sorry it didn’t work for you”. I’ve been referred for Cyber Knife. I was hoping surgeon would at least do an MRI to look for a cause, but rather I was punted. Neurologist yesterday referred me to Pain Management. I feel abandoned.

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@mrwtexas

Same experience. I am 3 months post MVD and hints of pain started about 3 weeks ago. Last night, and for the second time in a week, I was jolted awake by severe episodes. Surgeon says last Friday, “sorry it didn’t work for you”. I’ve been referred for Cyber Knife. I was hoping surgeon would at least do an MRI to look for a cause, but rather I was punted. Neurologist yesterday referred me to Pain Management. I feel abandoned.

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That feeling of being abandoned, especially when you had so much hope for the results of surgery, is a hard one to take. It does sound like you've got a path forward. Being referred for cyberknife will likely result in your getting imaging studies to look for the root cause that surgery was unable to resolve. That gives hope back, right?

And then being referred to pain management also seems like a good interim step until a more permanent solution (hopefully cyberknife) can be found. You don't want to be in pain between now and then.

What are you doing now to help with the pain?

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Thanks for replying. Sometimes it’s just good to share.

Trying to keep hope for sure. Taking max dose of Trileptal, Cymbalta and now Baclofen. These waking jolts are wearing me out. Seems my sleep is not deep enough. I’ll muscle through and keep busy until next step.

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