I’ve mentioned recently that I am looking into MVD, so I’m researching as much as possible and I’ve hit a bit of a wall.
I can’t quite understand why MVD procedures don’t work and so many people have the pain come back!?
If there is something pushing,pressing or interfering with the trigeminal nerve, and if by doing MVD it is then removed away from the nerve, then WHY or HOW can the pain return??
Am I missing something?
Please help me understand this.
i am not sure did your mri show something on the nerve? mine apparently should nothing?!! No one has ever really explained things I have been doing my own research I still have not found I good understanding neurologist i have just been talking to my family dr..good luck my prayers r with u
andria
Hi Andria,
I will ask my neuro on Tuesday, I just thought maybe someone here could explain it to me as we have so many people here who have gone through the MVD . I haven’t met with a neurosurgeon yet. Regular mris don’t show compression on the nerves, docs just look for signs of demyelination caused by MS or tumors, you need to have a special MRI to see the trigeminal nerve area. ( from my understanding) My neuro explained that most mris show nothing to explain why you have TN, so having a normal MRI is a good thing. It doesn’t mean you don’t have TN.trust me I know I have TN.lol
I just wonder why if there’s an artery or blood vessel putting pressure on the nerve and then you have MVD to remove it and Teflon pads placed between, why your pain would return?
Hope you find a neuroligist that you can trust and has knowledge of TN, but glad you have a doctor to help you.
(( hugs ))
oh i did not know that what is the special mri called because i dont think i had that i think i had a regular one but then again the neurologist never explained anything to me!!!! lol I have been to two neruologist the last one was horrible he basically told me to suck it up and be happy i could walk and did not have cancer...really!!! I am going through me second episode of pain this year and it feels as if the meds r not working as good and the pain has traveled to other places im going to stay positive and stay looking for a neurologist in my area that deals with tn and pray!!!!!!! good luck with oyur research if i find anything i will send it your way!!!!
andria
Go to the top right of screen to "face pain info " tab, then scroll down to the MRI scction to read up , my brain isn’t very good right now, don’t want to give you wrong info. There is a lot of great info within that tab!
It never ceases to amaze me that some specialists can be so heartless. I’ve seen my fair share, keep looking!
If your meds are not working go see your doctor and talk about pain management, AND request another referral to see a neuro, maybe someone you know can recommend one to you, or even someone on this board ?
Good luck!
Keep in touch!
I can say after talking to my neuro and he was very honest, that some of the MVD's that did not work were performed by Neurosurgeons who have only done a few of these a year, he basically said that many of them , not all, were because they were done by doctors who did not specialize in TN. My suggestion is to make sure that any neuro you go to does over a 100 of these a year, the neurologist that is going to do my MVD only does these surgeries now.
Wendy
I'm curious about this specific MRI. If they are looking for arteries and/or veins compressing the nerve, wouldn't everyone have to get a MRA (magnetic resonance angiogram: looks at the arteries) and/or a MRV (magnetic resonance venogram: looks at the veins) of the brain to check to see if any of them are in the wrong place or compressed? Actually, I'm curious who had to get an MRI, MRA and MRV of their brain before doing their MVD. I had them done and were normal but I was still sent to see a neurosurgeon. I see him on the 20th, so I don't know what the verdict will be, but I'm curious what others were told.
Mimi said:
Hi Andria,
I will ask my neuro on Tuesday, I just thought maybe someone here could explain it to me as we have so many people here who have gone through the MVD . I haven't met with a neurosurgeon yet. Regular mris don't show compression on the nerves, docs just look for signs of demyelination caused by MS or tumors, you need to have a special MRI to see the trigeminal nerve area. ( from my understanding) My neuro explained that most mris show nothing to explain why you have TN, so having a normal MRI is a good thing. It doesn't mean you don't have TN.trust me I know I have TN.lol
I just wonder why if there's an artery or blood vessel putting pressure on the nerve and then you have MVD to remove it and Teflon pads placed between, why your pain would return?
Hope you find a neuroligist that you can trust and has knowledge of TN, but glad you have a doctor to help you.
(( hugs ))
The MRI of choice will be called a "FIESTA" procedure. It involves sub-millimeter resolution, special magnet weightings, and imaging both with and without contrast agent. In the best case, the images will be reconstructed in 3-D post procedure. Not all MRI centers are equipped to do the procedure. It is costly and not all medical insurance is willing to cover that cost.
As for the original question: MVD is an art, like any other surgery. Sometimes surgeons get it wrong. Sometimes there are conditions present that MRI hasn't shown. Sometimes there is damage that can't be seen even through a microscope -- particularly in cases that begin with whiplash injury and extension or stretching of the nerve axially.
My consistent advice to patients has been "don't have this work done by anyone who hasn't already done at least 30 in the past year. " Preferably 20-30 per MONTH. It's a very small place to work, and learning curve matters. If you're dealing with a younger neurosurgeon who has impressed you, then ask how he or she has confirmed their outcome statistics over at least five years -- and/or who by name who is more experienced than they, will back them up in the operating room.
Regards and best,
Red
Thanks Red! Appreciate your detailed info and advice.
Mimi