Hi, I've already posted this in the general forum but I'm posting it here as well to maximise my chance of getting a response. I'm really desperate for info on this one. I'm blundering around in the dark by myself here! Thanks.
Anyone in theUKhad an MVD, or about to have one? I am in the limbo position currently, in that I have had a 'normalMRI', showing no compressions, but I have classic TYPE 1 TN, which has taken a turn for the worse recently - probably with the bad weather starting - and is giving me a lot more pain than it was during the summer.
My neurologist has written me off, and laughed in my face when I asked about getting an MVD done. I am getting a new neurologist and I intend to request a consultation with a neurosurgeon, but I am far from convinced that I want to go down that route; I just want to know if it is actually even open to me.
However, I am aware that it's better to treat with MVD sooner rather than later; that the op works better if you catch the disease early on, so I do want to know it's there as a fall-back position.
What I want to ask is did any of you get your MVD despite having a normalMRI? Or were you all 'blessed' with a clear compression showing on your scan? Any information on my likelihood of being considered or what their policy actually is most gratefully received.
Hi. I suffered from classic TN. After many months of different meds and 2 radio frequency ablutions. It was suggested I have an mvd. My MRI scan didn’t show any compressions but my neurosurgeon went ahead with the op (as nothing often does show on scans) and sure enough there was a compression! The op was a success. Nearly 2 years later after a car accident in which I banged my head the TN seemed to return. Again after meds and another MRI scan (nothing to see again) mvd was suggested. My original neurosurgeon wouldn’t do the op because of the risks but one of his colleagues was prepared to. So in April 2012 another op and yes the Teflon pad from my first op had moved causing the TN to return. Another pad put in and again a complete success. I must admit even if it returned again and a 3rd mvd was an option I would do it in a heartbeat. I know it’s not always a success for everyone. I consider myself very fortunate it was for me. I think you really do need a second opinion x
hi ya i had a mri and they told me i cant have mvd op i have the pain worse in winter than summer it started very bad on sat as with the wind weve had it was bad today as i couldent even go to work hope you are ok
Again, if your problem is in your teeth, you likely don't have Type 1 TN. the reason that the neuro probably "laughed in your face" is because he knows that MVD won't fix dental problems. Read thru this forum and the facial pain forum and hear the stories of people who had this procedure and ended up far far worse of. Don't risk it...don't do it.
Hi Tracey, Did your neurologist suggest an MVD when your meds weren't working? Were you still getting electric shocks despite medications? Were your meds not working at all, or had they stopped working after a while?
I'm trying to work out how long or how much you would have to suffer before you would qualify for an MVD! I've had diagnosed TN for just over 7 months, although I realise, looking back, that it had probably been around for a while longer, just not as severe.
Did your neurologist put you forward to the neurosurgeon?
The NHS is so secretive about how these things work that it's almost impossible to work out what is actually available to you, and my ex-neurologist was worse than useless and of the opinion that I am now a write-off, fated to a life of medications. I'm afraid of never getting meds to work fully (I've been in pain the whole time, just not shock level pain), or worse, that they suddenly stop working. Plus, of course, the side effects are a nightmare. A life of that sometimes seems unbearable.
It's really reassuring that you got an MVD when you had no compressions. I'd really like to know how you achieved that so I can use it with my new neurologist - when they finally ordain to give me one!
Tracey Gant said:
Hi. I suffered from classic TN. After many months of different meds and 2 radio frequency ablutions. It was suggested I have an mvd. My MRI scan didn't show any compressions but my neurosurgeon went ahead with the op (as nothing often does show on scans) and sure enough there was a compression! The op was a success. Nearly 2 years later after a car accident in which I banged my head the TN seemed to return. Again after meds and another MRI scan (nothing to see again) mvd was suggested. My original neurosurgeon wouldn't do the op because of the risks but one of his colleagues was prepared to. So in April 2012 another op and yes the Teflon pad from my first op had moved causing the TN to return. Another pad put in and again a complete success. I must admit even if it returned again and a 3rd mvd was an option I would do it in a heartbeat. I know it's not always a success for everyone. I consider myself very fortunate it was for me. I think you really do need a second opinion x
Hi Lorraine, you're in the same position as me, right down to the extra pain with the current windy weather! As Tracy has asked, why exactly did they say you couldn't have one? Was it because of the normal MRI? Did you ever see a neurosurgeon or was this just a pronouncement from your neurologist, like me?
lorraine said:
hi ya i had a mri and they told me i cant have mvd op i have the pain worse in winter than summer it started very bad on sat as with the wind weve had it was bad today as i couldent even go to work hope you are ok
Hi RCD, no, sadly my neurologist laughed in my face because she was a dick with God complex, but I appreciate your belief in her wisdom!
I have indeed read several stories of people who have had many procedures, ending up with MVD, and found no relief at the end, and indeed sometimes worse pain, which seems inevitable after so many procedures. But it doesn't convince me that it's an inherently bad idea. Compressions exist and MVD works for as many people as it fails.
I can't feel confident that more root canals, an inherently dangerous procedure for the Trigeminal nerve, is a great solution either, especially with no solid proof. I'm going to keep searching, and don't worry, I'm not jumping into MVD - I just want to know it's there for me if the drugs stop working completely. I couldn't go back to the electric shocks. No way.
Root canal damaged said:
Again, if your problem is in your teeth, you likely don’t have Type 1 TN. the reason that the neuro probably “laughed in your face” is because he knows that MVD won’t fix dental problems. Read thru this forum and the facial pain forum and hear the stories of people who had this procedure and ended up far far worse of. Don’t risk it…don’t do it.
Good Luck and keep an open mind about all of it. It could be that one of the root canals has gone bad....fill dissolved, wasn't complete to start with...
I have a tooth on the other side of my mouth from my bad root canal that has been hurting. I got up in the middle of the night and coated it with sensodyne and took ibuprofen. Two days later, it has calmed down. The thought of another root canal makes me sick. However, if I have to have one, I'm going 2 hours away to the dental school and have the head of the endodontic department hold my hand when they do it!!! they teach my case to their students as to why you don't deviate from standard of care materials! I get introduced to students every time I go there as, "you know her, she's the sargenti root canal"!! And they usually look at me and say "I'm sorry"..... Since I'm in the two endodontic textbooks used in the US, ALL the students know me...they just don't know my name but I wish they did. I'll be glad to stand up and be an example of how not to treat your patients.
Oh God, poor you. I'm dental phobic and the idea of dentistry fills me with horror, although I'd gladly trade this TN for a root canal any day. Believe me, I sincerely wish it was solvable with a root canal - terror or no!
But what's a "Sargenti root canal"? I thought I knew all there was to know about dentistry and here you are throwing more new stuff at me - I'm glad I met you!
yeah i had my mvd nearly a yr to the day (27th dec) my scans were clear,there were two neurologists the surgeon dr nath who didnt really want to do it but he got talked into it buy a young dr, dr mukargy not sure on the spelling, i suffered for 17yrs with the pain n for a week later after op still had it but then one morning just woke up n it was gone,ive had no pain for a yr now n been discharged from dr nath, so all i can say is keep pushing for it, cos when they got in my head they said they found three nervse touching, by the way this was done at james cook hospital middlesbrough, best of luck
Three compressions! And with a clear MRI?! Huh, that shows how great they are as a diagnostic tool! So can I ask why the surgeon didn't want to do it? Was it because you had a clear MRI? And how did the young doctor talk him into it; why did he feel it was worth doing?
phil ochs said:
yeah i had my mvd nearly a yr to the day (27th dec) my scans were clear,there were two neurologists the surgeon dr nath who didnt really want to do it but he got talked into it buy a young dr, dr mukargy not sure on the spelling, i suffered for 17yrs with the pain n for a week later after op still had it but then one morning just woke up n it was gone,ive had no pain for a yr now n been discharged from dr nath, so all i can say is keep pushing for it, cos when they got in my head they said they found three nervse touching, by the way this was done at james cook hospital middlesbrough, best of luck