Connect
After MVD surgery Trigeminal Neuralgia: How are you doing?
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.
Like
Helpful
HugInterested in more discussions like this? Go to the Brain & Nervous System Support Group.
Connect
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?
-
Like -
Helpful -
Hug
1 ReactionThanks 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.
I had 2 MVDs last year and it is not an easy recovery! But for me, the 2nd one seemed to work. My pain was so incredibly excruciating that I could not function. My surgeon is Chicago, but I did consult with Mayo prior to my procedures. I guess sometimes the compression can come back. After my 2nd surgery, I am face pain free but still have lingering issues like nausea, mild pain at craniotomy site and still have not been able to run. (I used to run marathons) But I remind myself that it takes time, we should listen to our bodies and go at our own pace. I find that modified yoga, sound healing and just taking walks is helpful. I also have been able to travel more and that keeps you distracted!