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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@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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