I had my first mvd 4 years ago and have been for the most part pain free. I had minor pain here and there until 3 months when it started back at full force. Most recently I was in the er this week and they secured me a surgeon appointment on Monday. They said they will be able to get me in as early as next week for surgery if that’s the direction they decide to take. First I have a 3 part MRI tomorrow. They say this new mri can tell them if something is being compressed. Has anyone had success in seeing this with this MRI? Has anyone had a second MVD? What were the results? Any and all advice and stories are more than welcome! I am desperate for pain relief and cannot wait to get to Monday.
Hi Crysta
Sorry to hear you are in so much pain again after 4 years clear.
I’ve had the 3 part MRI and it did seem to show the results that they were looking for and following it I had my second MVD. Both MVDs were successful in themselves but unsuccessful in relieving my pain so unfortunately I’m still taking a cocktail of drugs to help with the pain.
I hope you have success in your MVD if this is what is decided and that you are soon pain free again x
Hi Mandy. Im still trying to understand all this! If an MVD is sucessfull then what is now causing your pain? Does anybody know? I do pray that more understanding comes about regarding this condition. A Big Hug xx
Hi elstep,
I’ll try and answer that. Bare with me…
Like Mandy, my MVD was considered successful as well.
Success meaning, the compressing blood vessels and/or veins were “successfully” removed off of the trigeminal nerve.
In my case , my MVD provided 4-5 months pain free, not TN free. ( I still needed to take one med to manage the pain)
Compressions cause damage to the myelin sheath ( the protective outer coating of the nerve) think of the nerve as a wire …if the protective coating wears away the “wires” / “nerve” are exposed . This can cause hyper-excitability which in turn causes our nerve to register severe pain when it shouldn’t.
Our body has the ability to grow back myelin to a certain extent.
Sometimes, the nerve can be severely damaged and the myelin does not heal /grow as it did before.
Not everyone who has TN, has compressions, and not everyone who has compressions, has TN…
"research which shows that although 17% of mature adults have the TN lesion (usually a vascular compression of the trigeminal nerve close to where it exits the brain) only a very small minority (0.01%) of these individuals actually experience TN pain. This disconnect between lesion and pain is an important clue pointing toward a genetic predilection for TN. "
Taken from a Facial Pain Research Foundation Article
I will say I’ve found that overall my MVD made my bilateral TN better overall, in comparison to before MVD , but it did not cure my TN, nor even make it more responsive to meds. My quality of life is still poor . I would do MVD again in a heart beat if it could help me.
It has helped many people attain pain free, med free lives of various durations.
We are all different despite our similarities, and not one procedure or med is a solution for everyone, as we clearly see here at LwTN.
I’m really hopeful with the varied research projects going on at the FPRF … http://www.facingfacialpain.org/index.php?option=com_content&view=article&id=195:douglas-anderson-march-2014-report&catid=36:about-us
Hope you are well elstep! Hope my answer helped…sigh, I’m not very good at expressing things well anymore…if I confused you more I’m so sorry.
((Hugs)) Mimi
Hi Crysta,
I’m so sorry your pain has returned.
Sending you positive thoughts, I hope, should you choose to do MVD again due to further compression, that it provides you with long lasting relief.
If you haven’t already done so, perhaps check out the MVD group to read prior posts of others who have had 2 MVDs, you can also use the search feature ( upper right of your screen)
Let us know how it goes… (( hugs )) Mimi
How strange Mimi, that’s exactly what I was going to say hee hee! Seriously though, I’m glad you responded to that as you certainly explained it in far more detail than I could’ve. I’ve never really had it explained to me so I’ve also learned something new too and now it makes a little
Thank You Ladies for taking the time to reply (as everyone always does here).
Am I correct in thinking that if the MVD is successful but your still in pain then it is because the myelin sheath is damaged?
If so is there hope as long as it is no longer being compressed that it may slowly over a period of time repair itself?
If the the MVD stops your TN but then it returns months/years later does this mean the compression has begun again due to the teflon slipping or can there be another reason?
Elstep, I also have those questions. I’m 3 months post-op MVD and still have pain, but it isn’t in the same place as before surgery and it isn’t as bad. I have no clue if this is normal. I also would like to know why people need more than one MVD? Does the compression start in a new area?
Crysta, I’m so sorry we’ve taken over your thread…I’ll just reply here and if we need to chat more about it we can start a new thread. Apologies… Mimi xx
LoL @ Mandy ; )
Oh you’re so welcome Elstep, sorry I have a tendency for lengthy replies…
Sorry in advance this will be long…
I’ll try and answer your questions based on the research ive done, and my own opinions/conclusions…keeping in mind I’m not a doctor or neuroscientist.
: )
By the way, NO basic questions…I wish we talked about this more and shared our opinions …
Many people are of the understanding that “compression” and “MVD” are a cause and a cure for TN.
For some that has proven true, but not for ALL.
The questioning then becomes why did MVD work for patient A but not for patient B?
Some suggest that the sooner you have the compression(s) removed, the better the outcomes.
Others suggest that since MVD isn’t a cure all, there’s logically more to it…and I quote
Dr. Mark Linskey here ;
“Clearly vascular compression, while necessary, is not sufficient. The logical additional factor, that many have speculated about, likely involves additional predispositions related to genetics and/or the biology of myelin nerve insulation, axonal damage, or both. In my opinion, studies of deferential gene expression comparing classical TN patients to normal population controls carry the highest chance of uncovering potentially new fruitful areas for investigation and future therapeutic exploitation for patients with classical TN”
What of the TN patients who have no compressions, yet suffer classic TN?
There’s obviously so much more involved. Current research projects are really focusing on several different aspects at LONG LAST…to help answer these questions and develop possible solutions for better quality of life.
So if MVD is successful, but you’re still in pain is it because the myelin sheath is damaged?
I believe it is because the myelin sheath is severely damaged and all the axons, cells etc are no longer working together to heal itself. BUT I also believe it’s because compression is an irritant NOT a cause.
it may definitely over time repair itself. I believe that’s what happened when I went into my lengthy remission. However, I personally think in my case the myelin sheath is damaged beyond repair but that’s an uneducated guess, just based on the fact that I had MVD, so the compressions were removed, yet I’m not cured…so why is that? I thought about it, and read and read many research articles, and this was the conclusion I came up with.
TN is progressive.
Sure you’re pain returning could be from further compressions
BUT it can also be from other unknown factors that are currently being researched.
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By Dr. Ze’ev Seltzer;
“This is a terrible disease,” said Seltzer. “It is the most excruciating pain syndrome that exists.”
Painful as it may be, only 70 out of 100,000 people suffer from it, making it extremely rare, especially when you consider that worldwide 20 to 25 per cent of the population will suffer from chronic pain sometime during their lifetime.
In recent years, thanks to new imaging techniques, researchers have come to learn that 16 per cent of the population “have the congenital abnormality in which a blood vessel compresses on the nerve root,” causing the condition, Seltzer said.
Researchers are investigating why only a small portion of that group actually suffer the excruciating pain, while most don’t, he continued. They think there’s a genetic reason for it, a gene or group of genes which predisposes some to experience the pain while others don’t.
“We believe that the reason for the pain … is a variant of one of the genes” or a number of genes that affects a patient’s sensitivity to pain, he said.
Researchers are hoping to isolate the gene or genes involved so that a treatment can be developed, Seltzer said
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By Dr. Mark Linskey
The word imperative refers to something that is both necessary and of vital or crucial importance. It may also refer to the expression of a command. For facial pain syndromes new discovery and therapeutic breakthroughs through basic science research is an absolute imperative in the first sense and an imperative from our patients and their loved ones in the second sense.
We know that vascular compression is a necessary cause for the majority of classical TN patients. Yet up to 40% of normal living patients and up to 50% of patients studied at autopsy have these vascular contacts without having TN. Clearly vascular compression, while necessary, is not sufficient. The logical additional factor, that many have speculated about, likely involves additional predispositions related to genetics and/or the biology of myelin nerve insulation, axonal damage, or both. In my opinion, studies of deferential gene expression comparing classical TN patients to normal population controls carry the highest chance of uncovering potentially new fruitful areas for investigation and future therapeutic exploitation for patients with classical TN.
While the hoped for discoveries from studying differential gene expression in cases of classical TN might be more generalizable to help patients with other facial pain syndromes, this is by no means certain. Thus, simultaneous additional lines of research inquiry are also desperately needed. These include the urgent need for a better understanding of the neurochemistry and the psycho-biology of chronic neuropathic pain and the fast-track development of new agents for clinical testing. It includes studies into the biology of nerve repair and regeneration, through both pharmacological means as well as potential cellular therapies including stem cells. It also includes the need to study safe means of modulating pain perception at the brain level through brain stimulation technology.
Hi everyone! Thanks for all the responses- my mri came back showing nothing. With much discussion we have decided to go ahead and redo the mvd. I’m going in really knowing it could come out with nothing but I’m confident they have to find something because of how severe the pain is. It is very similar to last time and like this time the mri showed nothing then either. Regardless this is the best option for me to take as the medicine side effects are not allowing me to live a normal 26 year old life. I also am
Not ready for the destructive nerve procedures at this age. I have surgery at 8 am tomorrow by dr sekula and am hoping for the best!
Hi Crysta, I hope your surgery went well and has had a very positive outcome. Wishing you well during your recovery and don’t forget as Mimi would say, rest, rest, rest and then rest some more! X