Neuropathy in the brain from post MVD operation

Posted by earringsbylulu11 @earringsbylulu11, Apr 13, 2022

Neuropathy in the brain from post MVD operation
Hi I’m new to the group, I do have neuropathy in my feet and hands for a long time. Just over a year ago I had an MVT operation for my TN And I have neuropathy in my brain along the incision area and to the top of my head. I was wondering if this group follows this type of neuropathy. Thank you

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Hi @earringsbylulu11, Are the symptoms you are having after the microvascular decompression surgery the same or similar to your symptoms before you had the MVD surgery? I'm wondering if your surgeon or doctor may have some thoughts or suggestions.

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I had trigeminal neuralgia for two years. I had my MVD operation a little over a year ago. Prior to my operation I had strong ear pain attacks and that was it. Now and for the past year after my MVD operation I am now having three attacks a day like I said along with many other symptoms that are destroying my life. I’ve been to my doctor and he told me nine months ago that there was nothing he could do. U Of M has basically cut me off including their pain clinic that hardly helps me. I have been to several hospitals for help i’ve been to Mayo clinic in March stayed for three days doctors were very nice but I’m still in the same predicament I’m not sure what to do. Again the doctors were very kind but I still walked away without a diagnosis and in tremendous pain I have tried so hard but they told me if UofM can’t fix it either they we. That was my other hospitals Mayo Clinic. I really like the doctors at Mayo Clinic I just thought I’d walk away with more help Ian’s answer. I’m sorry but I’m getting upset just Talking about it. Any help would be greatly appreciate it and thank you for getting back to me

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@earringsbylulu11

I had trigeminal neuralgia for two years. I had my MVD operation a little over a year ago. Prior to my operation I had strong ear pain attacks and that was it. Now and for the past year after my MVD operation I am now having three attacks a day like I said along with many other symptoms that are destroying my life. I’ve been to my doctor and he told me nine months ago that there was nothing he could do. U Of M has basically cut me off including their pain clinic that hardly helps me. I have been to several hospitals for help i’ve been to Mayo clinic in March stayed for three days doctors were very nice but I’m still in the same predicament I’m not sure what to do. Again the doctors were very kind but I still walked away without a diagnosis and in tremendous pain I have tried so hard but they told me if UofM can’t fix it either they we. That was my other hospitals Mayo Clinic. I really like the doctors at Mayo Clinic I just thought I’d walk away with more help Ian’s answer. I’m sorry but I’m getting upset just Talking about it. Any help would be greatly appreciate it and thank you for getting back to me

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Here is some information that discusses the possibility that the MVD may need to be repeated for some people.

Repeat microvascular decompression for patients with persistent or recurrent trigeminal neuralgia:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6504312/
Unusual recurrence of trigeminal neuralgia after microvascular decompression by muscle interposal:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3539511/

Mayo Clinic has a patient portal where you can send messages to your doctors or care team. If you have been a patient at Mayo Clinic, I think I might try sending a message to the doctor I saw on the patient portal to see if you can get a second opinion. If you haven't already setup the patient portal and you have a Mayo Clinic ID number, you can easily create an account on the portal here – https://onlineservices.mayoclinic.org/content/staticpatient/showpage/patientonline

Have you used the Mayo Clinic patient portal before?

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@johnbishop

Here is some information that discusses the possibility that the MVD may need to be repeated for some people.

Repeat microvascular decompression for patients with persistent or recurrent trigeminal neuralgia:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6504312/
Unusual recurrence of trigeminal neuralgia after microvascular decompression by muscle interposal:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3539511/

Mayo Clinic has a patient portal where you can send messages to your doctors or care team. If you have been a patient at Mayo Clinic, I think I might try sending a message to the doctor I saw on the patient portal to see if you can get a second opinion. If you haven't already setup the patient portal and you have a Mayo Clinic ID number, you can easily create an account on the portal here – https://onlineservices.mayoclinic.org/content/staticpatient/showpage/patientonline

Have you used the Mayo Clinic patient portal before?

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Thank you so much for the additional information. I was told by Mayo Clinic that I should not have any type of intervention operations. I would be open to anything to relieve this pain for the trigeminal and mostly for the Trigeminal Neuropathy that I now have the right side of my brain. I’m not sure if that can be fixed but I do need help. John thank you for getting back to me, you sent me more information than I’ve gotten in a year with other doctors

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Thank you for the additional information, has more information than I received in the last year with other doctors. Mayo clinics suggest I did not do any type of intervention for my pain. I would do anything to relieve the pain for the trigeminal that still exist and for my brain pain from the operation that is now called trigeminal neuropathy. John thank you thank you thank you. It’s nice to know somebody cares and it’s listening

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@johnbishop

Hi @earringsbylulu11, Are the symptoms you are having after the microvascular decompression surgery the same or similar to your symptoms before you had the MVD surgery? I'm wondering if your surgeon or doctor may have some thoughts or suggestions.

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My NS after my MVD told me he couldn’t do anything, my neurologist through the hospital that I had the MVD has given me very little help. Mayo Clinic suggested I do not do any type of intervention. The pain clinic through my neurologist so that’s all he can do for me. Thank you for asking if you have further questions please let me know thank you again for taking your time

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@earringsbylulu11

My NS after my MVD told me he couldn’t do anything, my neurologist through the hospital that I had the MVD has given me very little help. Mayo Clinic suggested I do not do any type of intervention. The pain clinic through my neurologist so that’s all he can do for me. Thank you for asking if you have further questions please let me know thank you again for taking your time

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Has any of the doctor's you have seen mentioned possibly having a pain pump implanted? Your pain sounds so severe. I've heard that some people get some relief with that device. Perhaps a skilled pain management doctor can determine if your condition would warrant an attempt.

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@martyk

Has any of the doctor's you have seen mentioned possibly having a pain pump implanted? Your pain sounds so severe. I've heard that some people get some relief with that device. Perhaps a skilled pain management doctor can determine if your condition would warrant an attempt.

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Thank you for your suggestion, No, none of the doctors mentioned a pain pump implanted. I did talk to a Neurosurgeon that was interested Wanted to implant a nerve stimulator with leads into my head and on my spine. Sounds scary to me. I have worked with the pain clinic which is supposed to be one of the best also The same university I got my MVD. It’s such a problem I’m finding another doctor That will help me. Thank you again

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Brain neuropathy. After a unsuccessful MVD operation I was told By a neurologist I have Trigeminal neuropathy Besides still having trigeminal neuralgia. Wondering if anyone in this group experience brain neuropathy. Thank you

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Have you been prescribed any medications for the pain? Have you considered trying CBD oil or research this? Maybe time to think outside the box?

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