I often wonder why a second MVD is needed after a few years. Does the teflon wear down or shift? Does the second surgery replace and/or reposition the teflon?
It would make sense to me that the continuous pulsing of the blood vessel/vein and plain old time could cause that teflon piece to shift.
Has anyone with multiple MVD experienced this or am I totally out to lunch.
I am looking at MVD as an option. I am only 40 so if a repeat surgery is likely, I would rather know before I make any decisions. And yes - I know nothing is certain.
Elaine, one of the mechanisms by which some MVDs fail over time, is very likely much as you speculate: shifting of the teflon fiber used to separate nerve and blood vessels. Another player is further development of additional blood vessel loops, or development of a lesion (scar) or adhesions between the nerve and surrounding tissues. It's not always clear exactly why these mechanisms operate.
An important statistic: with Typical TN and an experienced surgical team that does lots of MVDs every year (say 30 or more, in my experience), initial success rates usually exceed 90%. Reports in the New England Journal of Medicine indicate that if MVD is initially successful, about 70% of all patients are still pain free after 12 years. With Atypical TN, the odds aren't as good because the mechanism that causes the pain may not be a discrete nerve compression, and even when compression is found, there seem to be other distributed mechanisms or effects in play in the peripheral distribution of the nerve, distant from the emergence zone near the brain stem.
When symptoms include electric-shock jabbing pain, many neurosurgeons will offer MVD whether or not there is clear evidence of compression by a blood vessel. I've seen articles in medical literature which indicate that for this type of pain, a compression is found almost 100% of the time, regardless of whether it is visible on MRI. In cases where a compression is not found, the surgeon has the option of doing a partial nerve section -- a partial cutting of nerve fibers -- to reduce the nerve's efficiency in transmitting painful pulses.
Without answering for Elaine, I would offer the observation that there are no 100% chances in real world surgery. However, a lot of surgeons who do RF Rhizotomy or Glycerol Rhizotomy point out to patients that although the persistence of pain relief may be shorter than with MVD, the costs are also significantly lower and these procedures can be repeated if and when pain recurs. Both Glycerol and RF Rhizotomy are office procedures. They may not be appropriate when pain originates and is later dominated by Atypical TN symptoms, but they are certainly options for a mixture of TN and ATN pain types.
My MRI is "clear" so I assume they cannot see any vessels. The literature I have seen is the same as Red - quite often the MRI does not show the vessels even though they are present. I am full out ready and in favor of the MVD - I am just having problems getting through the red tape of a referral.
I am atypical, but I did start out as typical. I know my odds aren't as good but they are still on the good side. Compared to the battle I am losing being on my meds - I am willing to take those odds.
I have TN1 - Had it active for a year - did nothing but trileptal and research for 12 months - then I picked one of the top surgeons in the country--had my MVD last Oct -- fine for 11 weeks---then pain came and went itty bitty---
I have been told it can take up to a year for the nerve to settle down -- they clamped 2 places on me -
-- now back on lowwww trileptal 5 months later - and confused-- I was set to go on a cruise and the week before that
TN really bit me in the ass -- got home from the cruise 2 days ago - and still using a little lidocane creme and low trileptal - haven't been sure whether to grieve or not - need to find a job !!!! ---it's complicated because trileptal makes me incompetent to interview --- but this low dose is okay so far
but if my surgeon says its the thing to do --- I'll fly to Michigan and go have another MVD before I let it come back and stay full blown.
Haven't really posted much about it here yet as I was going to be a 100% success story for inspiration for others - wellll we will see. I see many failed 1st, 2nd and 3rd MVDs at my support group and on here -- because most that are pain free don't hang around here anymore --- I know I will always have TN - whether it is active or not - and I'd rather do a second MVD than a nerve damaging procedure the 2nd time around --- statistics are in my favor - but sometimes I wish I had a crystal ball huh!?!
Finally I've heard of stem cell research on TN for a cure --- hope it's here in the next 30 years or less! Waaaaayyyy less : )
My MRI was clear too. I ended up trying everything but the MVD. Got to the point where the meds no longer worked and basically was in constant pain for 4 years. I could not take it any more and had the MVD. When my doctor went in to do the MVD, they could not believe how bad it was. I had quite a few areas that were twisted and needed 3 pieces of teflon in 3 different areas.
Don't suffer. I wasted four years of my life. I did end up with double vision as a side effect which we are all hoping will go away but I would do it again even knowing this. You don't realize how compromised your life has become even if you think you are dealing with things until you are free from pain.
I worry too about a second surgery but will do it again if the time comes. I had to pay $5500 to have it due to my deductibles, etc. but I would do it again.
Dear Raquel - i'm so much interested of knowing more of the MVD. and not showing in the MRI.
My MRI is also not showing anything .
Are there any doctors who are wiiling to "open" without seeing anything in the MRI ? here, in Isarel, i was explained that doctors won't open without a reason on the MRI.
where do they do the cut. how do they see all those twisted nerves... is it more near the brain ? and what if the "twisted" nerve is in the mouth /gums ?
by the way - isn't that "double vision" a real problem ? i mean it can make you naseua all day , or am i wrong ?
it's so good to hear sucess stories. and you are all right- only after we are healthy - we would be able to think of the horror we live in. now we are afraid to imagine.
My Dr. Ken Casey -- done hundreds/thousands of MVDs -- does no longer do MRI for MVD on a regular basis
-- said it not necessary - that if such patient oral history and pain scales indicate things like wind on your cheek - throws you to the ground = compression is there whether you take a film to try and see it or not
Dr. Casey was my doctor too! So, I would have to say that there are doctors who will do the MVD without a clear MRI. My cut was right behind my ear. I am not sure how they see all the nerves. My guess would be that they follow the trigeminal nerve to see where the nerve and veins are rubbing or twisted around. I have to be honest, I did not ask much as I was just so thankful it was all over.
Yes, double vision is a serious problem but such a small percentage get it that I would not worry. I may have to have surgery to correct it but right now, it just makes me tilt my head which is not horrible. If I get tired, I do notice my vision will suffer a bit but I try to be careful. Dr. Casey wants me to wait 1 full year before I have the surgery just in case it recovers on its own.
Dr. Casey does explain it the way KC Dancer said. If you present the way 1000 have - you have trigeminal neuralgia. I was so classic that he wanted me to have the MVD when he diagnosed me but instead I played the meds game and wasted four years.
Kc dancer, I also underwent mvd in October and was also pain free for some weeks, until BAM, it’s back, and I’m even questioning whether it’s worse than before?!! How is this so?!! I’ve grieved, it’s so frustrating, I too was going to be magically fixed after the procedure and now dealing with the fact that I may have to live with this pain everyday sux!!
MRI clearly showed the vessel was loop around the nerve in two different places and the upon exploration and mvd it was evident the vessel was really compromising the nerve, the surgeon was so happy and said it was a success?! If that’s the case then why am I on the couch in agony now while my kids fend for themselves yet again???
What would having a second MVD do in my case? I don’t understand how if the first one hasn’t worked what makes them think a second would? I’m fed up, but glad to read your post and see I’m not the only one in this boat!!!
Kc Dancer Kc said:
It’s the million dollar question! 2nd MVDs
I have TN1 - Had it active for a year - did nothing but trileptal and research for 12 months - then I picked one of the top surgeons in the country–had my MVD last Oct – fine for 11 weeks—then pain came and went itty bitty—
I have been told it can take up to a year for the nerve to settle down – they clamped 2 places on me -
– now back on lowwww trileptal 5 months later - and confused-- I was set to go on a cruise and the week before that
TN really bit me in the ass – got home from the cruise 2 days ago - and still using a little lidocane creme and low trileptal - haven’t been sure whether to grieve or not - need to find a job !!! —it’s complicated because trileptal makes me incompetent to interview — but this low dose is okay so far
but if my surgeon says its the thing to do — I’ll fly to Michigan and go have another MVD before I let it come back and stay full blown.
Haven’t really posted much about it here yet as I was going to be a 100% success story for inspiration for others - wellll we will see. I see many failed 1st, 2nd and 3rd MVDs at my support group and on here – because most that are pain free don’t hang around here anymore — I know I will always have TN - whether it is active or not - and I’d rather do a second MVD than a nerve damaging procedure the 2nd time around — statistics are in my favor - but sometimes I wish I had a crystal ball huh!?!
Finally I’ve heard of stem cell research on TN for a cure — hope it’s here in the next 30 years or less! Waaaaayyyy less : )
I still believe it holds true to wait a year - before having another MVD --- but many have had them - no reason or rhyme - but if you have a nerve damage procedure THEN go try and have MVD again - odds mucho worse.
Let your surgeon know -- see if you are supposed to hang on for a year, do alternative therapies - or jump back into the land of unknown procedures
I've done lidocaine topical and reiki treatments - both have weirdly served me well
coming here helps + we have local support group here