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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@smurfieallena– Hi. Unfortunately I read/hear about these situations all too often. At the risk of sounding direct, your surgeon will be of know help with the situation you are expressing. Once he has completed his job, it’s on to the next patient to make more money. There is no “care” involved with elective surgical patients. To throw out the disclaimer, I am by no means a medical professional, but I can share with you what I know…
-Unfortunately patients are not properly informed on the overall affects surgery has on the body systems.
-Surgery is a trauma (shock) to the body. Your body has to figure out how to operate in this new altered state. A surgery to an arm, leg, hip is different. You have a therapist to help you regain strength, movement etc…With a surgery that is closer to the brain or intracranial, you don’t have that.
-Have you contacted a Neuro Psych? Someone who is specifically experienced with helping patients post surgery?
-The brain is very complex and a mix of sensitive neurotransmitters, that all have to be functioning at optimal levels for memory processing, mood etc…
-It takes a lot of brain energy to operate the entire body as well as recover from an invasive intracranial surgery.
-I would focus on brain health activities and nutrients first and foremost for optimal neurotransmitter function. When serotonin is low, memory formation depletes.
-The brains responsibility is to protect us from harm. Sometimes, post surgery, especially the closer to the brain, it can get stuck in a protective state, which eliminates all ability to create new memories and be creative.
-The Trigeminal Nerve is the most powerful nerve in the body. And responsible for many signals to the brain. The trigeminal nerve actually has a lot of serotonin signaling running along the pathway.
-There are reasons they have counselors/therapists specifically for pre op/post op time frame.
-Any intracranial surgery is a huge shock to the system and needs to be treated and managed as such.
-Unfortunately people undergoing surgical procedures are only given the high risk injuries. But never warned about the other more common occurrences that can not be predicted.
-Again, I am not a medical professional, but you can ask any Neurologist these questions and they will probably not want to discuss this aspect because it is beyond their scope they get paid for. You would have better luck speaking to a Neurologist (whom does not perform surgery) about how this all works. Which is why I recommended atleast talking to a Neuro Psych.

REPLY

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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@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

Jump to this post

I had two MVDs and gamma knife for TN with relief only for a few months each time and getting worse with each relapse
Having tolerable pain now with a pain pump hoping it lasts since I had a dose increase already but since I also have rheumatoid arthritis with other neuropathies I am ok for now
Good luck to you!
I am in Houston TX and my neurologist is at Baylor college of medicine

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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

Jump to this post

@earringsbylulu11, I'm sorry to hear that the Microvascular decompression (MVD) surgery to relieve abnormal compression of a cranial nerve causing trigeminal neuralgia didn't relieve the pain. I moved your post to this discussion so that you can connect with members like @kenyalama @smurfieallena @nrd1 @2jalapenos and others.
– After MVD surgery Trigeminal Neuralgia: How are you doing? https://connect.mayoclinic.org/discussion/mvd-surgery-and-memory-loss/

You may also be interested in these related discussions:
– Trigeminal neuralgia: https://connect.mayoclinic.org/discussion/trigeminal-neuralgia-5/
– Trigeminal Neuralgia*: https://connect.mayoclinic.org/discussion/trigeminal-neuralgia-2273cc/
– MVD surgery for Hemifacial Spasms https://connect.mayoclinic.org/discussion/mvd-surgery-for-hemifacial-spasms/

What have your doctors suggested as the next step?

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I am having acceptable pain relief with an intrathecal pump receiving dilauded and taking phenytoin 100 mg and Baclofen 19 mg three times a day
The dilauded pump was the only long lasting relief
Two MVDs and one gamma knife surgery helped eight months each so it took me three years to find the way to be able to speak and live with TN
So far so gooood!
Virtual hugs to my TN friends
Only us know ! If they knew!

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@nrd1

@smurfieallena– Hi. Unfortunately I read/hear about these situations all too often. At the risk of sounding direct, your surgeon will be of know help with the situation you are expressing. Once he has completed his job, it’s on to the next patient to make more money. There is no “care” involved with elective surgical patients. To throw out the disclaimer, I am by no means a medical professional, but I can share with you what I know…
-Unfortunately patients are not properly informed on the overall affects surgery has on the body systems.
-Surgery is a trauma (shock) to the body. Your body has to figure out how to operate in this new altered state. A surgery to an arm, leg, hip is different. You have a therapist to help you regain strength, movement etc…With a surgery that is closer to the brain or intracranial, you don’t have that.
-Have you contacted a Neuro Psych? Someone who is specifically experienced with helping patients post surgery?
-The brain is very complex and a mix of sensitive neurotransmitters, that all have to be functioning at optimal levels for memory processing, mood etc…
-It takes a lot of brain energy to operate the entire body as well as recover from an invasive intracranial surgery.
-I would focus on brain health activities and nutrients first and foremost for optimal neurotransmitter function. When serotonin is low, memory formation depletes.
-The brains responsibility is to protect us from harm. Sometimes, post surgery, especially the closer to the brain, it can get stuck in a protective state, which eliminates all ability to create new memories and be creative.
-The Trigeminal Nerve is the most powerful nerve in the body. And responsible for many signals to the brain. The trigeminal nerve actually has a lot of serotonin signaling running along the pathway.
-There are reasons they have counselors/therapists specifically for pre op/post op time frame.
-Any intracranial surgery is a huge shock to the system and needs to be treated and managed as such.
-Unfortunately people undergoing surgical procedures are only given the high risk injuries. But never warned about the other more common occurrences that can not be predicted.
-Again, I am not a medical professional, but you can ask any Neurologist these questions and they will probably not want to discuss this aspect because it is beyond their scope they get paid for. You would have better luck speaking to a Neurologist (whom does not perform surgery) about how this all works. Which is why I recommended atleast talking to a Neuro Psych.

Jump to this post

Thank you

REPLY
In reply to @earringsbylulu11 "Thank you" + (show)
@earringsbylulu11

I am doing just fine. Thank you so much for your concern
My MVDs and gamma knife were between 2917 and 2029
For now I only have to go every theee months to have the med instilled in the pump by a nice/ very pleasant neurologist (so far
and I I make sure to take my meds
I also make sure to do meditation and stretchings. Free meditation site : Insight Timer
Thank you for your thoughts

REPLY
@kenyalama

I am doing just fine. Thank you so much for your concern
My MVDs and gamma knife were between 2917 and 2029
For now I only have to go every theee months to have the med instilled in the pump by a nice/ very pleasant neurologist (so far
and I I make sure to take my meds
I also make sure to do meditation and stretchings. Free meditation site : Insight Timer
Thank you for your thoughts

Jump to this post

Sorry I meant 2020 of course

REPLY
@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

Jump to this post

Yes I posted my experience several times about two failed NVDS and gamma knife
Check for pain pumps with your doctors

REPLY
@kenyalama

I am doing just fine. Thank you so much for your concern
My MVDs and gamma knife were between 2917 and 2029
For now I only have to go every theee months to have the med instilled in the pump by a nice/ very pleasant neurologist (so far
and I I make sure to take my meds
I also make sure to do meditation and stretchings. Free meditation site : Insight Timer
Thank you for your thoughts

Jump to this post

It is an encouragement to hear That you have your pain under control. I have been searching for a medical intervention to relieve my pain, only to find out it could make my pain worse. I love to hear that you are stretching and meditating which is something I have not done for two years and it shows. Please stay in touch take care

REPLY
@colleenyoung

@earringsbylulu11, I'm sorry to hear that the Microvascular decompression (MVD) surgery to relieve abnormal compression of a cranial nerve causing trigeminal neuralgia didn't relieve the pain. I moved your post to this discussion so that you can connect with members like @kenyalama @smurfieallena @nrd1 @2jalapenos and others.
– After MVD surgery Trigeminal Neuralgia: How are you doing? https://connect.mayoclinic.org/discussion/mvd-surgery-and-memory-loss/

You may also be interested in these related discussions:
– Trigeminal neuralgia: https://connect.mayoclinic.org/discussion/trigeminal-neuralgia-5/
– Trigeminal Neuralgia*: https://connect.mayoclinic.org/discussion/trigeminal-neuralgia-2273cc/
– MVD surgery for Hemifacial Spasms https://connect.mayoclinic.org/discussion/mvd-surgery-for-hemifacial-spasms/

What have your doctors suggested as the next step?

Jump to this post

Thank you for all your information, definitely something I have to look into. My next step that was suggestion would be a cortical nerve stimulation. I have been reading about the procedure but not sure where I can find a doctor except for in Florida that does this procedure. I am still trying to grasp the information that no intervention would help my trigeminal neuropathy. Thank you again you’re very kind

REPLY
@kenyalama

I had two MVDs and gamma knife for TN with relief only for a few months each time and getting worse with each relapse
Having tolerable pain now with a pain pump hoping it lasts since I had a dose increase already but since I also have rheumatoid arthritis with other neuropathies I am ok for now
Good luck to you!
I am in Houston TX and my neurologist is at Baylor college of medicine

Jump to this post

Thank you

REPLY
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