I had MVD Feb 16th and was doing great until last Tuesday. The burning,tingling, and stabbing is back. I'm afraid that the Teflon padding has slipped. The Holiday weekend has me on hold waiting for a call back from my surgeon. Has anyone else experienced this? I am beyond devastated, for I thought my life was back on track....
Unfortunately mine came back about 4months after surgery. I’m on to gamma knife in a couple weeks…
Did they say why? Did the Teflon slip?
Anne burkhardt said:
Unfortunately mine came back about 4months after surgery. I'm on to gamma knife in a couple weeks...
Mine came back 6 months later
Did you have another MVD?
Hanging in there said:
Mine came back 6 months later
No My surgeons said would be too high a risk for complications since they would be working with scar tissue. I have seen where some people have gotten them again. I had a second gamma knife after the surgery and the numbness seems to help with pain. My doctors told me they could do Thermal Rhysitomy (spelling?) but side effects could cause more pain (not what I want!!) or pain management . I am hoping they find something that will help without complications soon!! I thought it would be the cure all and it was for 6 months but then back not sure why!
Mary Beth Thorngren said:
Did you have another MVD?
Hanging in there said:Mine came back 6 months later
Just saw my NS this morning. He wants me back on Gabapentin to see if it manages the pain. If that doesn't work then he said Gamma Knife is the next option. He said no to another MVD for the same reasons yours did. What meds are you taking?
Hanging in there said:
No My surgeons said would be too high a risk for complications since they would be working with scar tissue. I have seen where some people have gotten them again. I had a second gamma knife after the surgery and the numbness seems to help with pain. My doctors told me they could do Thermal Rhysitomy (spelling?) but side effects could cause more pain (not what I want!!) or pain management . I am hoping they find something that will help without complications soon!! I thought it would be the cure all and it was for 6 months but then back not sure why!
Mary Beth Thorngren said:Did you have another MVD?
Hanging in there said:Mine came back 6 months later
Second gamma didn't do much but I figure worth a shot. I take 300mg lyrica a day just transitioned from 4000 gabapentin and 30mg baclofen/ day which wasn't working anymore. Am allergic to tegretful for now lyrics holding pain at bay but haven't found relief for breakthrough pain yet baclofen doesn't cut it see my doctor tomorrow
Lyrica worked for me at 600 for awhile then it stopped. Today was a little better =first day on Gabapentin -just 300mg. I am fighting,trying to stay strong and positive. What did the doctor say?
~MB
Hanging in there said:
Second gamma didn't do much but I figure worth a shot. I take 300mg lyrica a day just transitioned from 4000 gabapentin and 30mg baclofen/ day which wasn't working anymore. Am allergic to tegretful for now lyrics holding pain at bay but haven't found relief for breakthrough pain yet baclofen doesn't cut it see my doctor tomorrow
Adding amitriptyline 25mg, gabapentin worked for me for a number of years HOPE it's successful for you! I feel like not many medicines still available other than pain but lyrica fairly new hope they discover something else! Glad gabapentin is helping!
I had TN1 and MVD
it took several months for everything to settle in.
So truly didn’t get into remission for several months.
It can take up to a year…please don’t rush to any other procedures just yet.
Been in remission since 2012.
I would agree with KC Dancer. Hold off from jumping into another alternate procedure until you’ve got answers.
It sounds remarkable that so many of you are having a resurgence of pain again after the MVD procedure.
As I have noted on other groups, make sure to talk directly with the Surgeon and find out why you are having a return of pain after the surgery. He would be your best source of definative knowledge of whether he was completely successful with your particular case. If in question have a 2nd contrast MRI to help spot whether the Nerve is still being compressed by vessels. I am so sad you all are having a return of pain and are having to get back on these damn meds. I had TN for 6 years, tried Tegretol and was allergic, this last year the Gabapentine stopped working and decided to have the MVD procedure on May 13th, so far no pain, I am off the Gab for good, I do have risidual right face numbness, some double vision, but not pain at all.
I know I am a fairly recent recipient of this surgery, but I am hoping after 91/2 hours of surgery, the Doctor nipped it in the bud for good. My very best to you all BB
Unfortunately, I too have been feeling the all to familiar sparks to my face again. I had MVD 2 years ago this past March. I held on to the hope of it lasting for the rest of my life. I plan on calling my NS today after having a shock every day for a week now. If it stayed like it is right now, I totally could live with it. However, having been to the opposite extreme where medications didn't do anything except take my life away from me - I'm not waiting. I will not hesitate to go through another surgery, if that's even possible. I'm so afraid of having this pain again.
let us know what the NS says. Mine has calmed down except for the burning since being back on the Gabapentin.
domelover said:
Unfortunately, I too have been feeling the all to familiar sparks to my face again. I had MVD 2 years ago this past March. I held on to the hope of it lasting for the rest of my life. I plan on calling my NS today after having a shock every day for a week now. If it stayed like it is right now, I totally could live with it. However, having been to the opposite extreme where medications didn't do anything except take my life away from me - I'm not waiting. I will not hesitate to go through another surgery, if that's even possible. I'm so afraid of having this pain again.
Mary Beth: So sorry to hear this. Teflon can slip but that is unusual. My MVD failed after 4 years. At a TNA Conference I asked why to many neurosurgeons in a forum. Both Drs. Casey and Janetta (RIP) said that it was another vessel but if the pain had returned in the first few months it was a vessel compression that was missed by the neurosurgeon. Don't give up as a second MVD may solve the difficulty.
domelover said:
Unfortunately, I too have been feeling the all to familiar sparks to my face again. I had MVD 2 years ago this past March. I held on to the hope of it lasting for the rest of my life. I plan on calling my NS today after having a shock every day for a week now. If it stayed like it is right now, I totally could live with it. However, having been to the opposite extreme where medications didn't do anything except take my life away from me - I'm not waiting. I will not hesitate to go through another surgery, if that's even possible. I'm so afraid of having this pain again.
The surgeon is placing me back on Tegretol (I'm allergic to Gabapetin). He's saying something about the nerve possibly being inflamed but is reluctant for me to have an MRI yet. The nurse is going to ask him why the nerve would get inflamed. If things continue to worsen he will then have an MRI done, but seems to think that I should try the meds first for a couple of months.
I had my MVD 6 months ago & was doing great until I started having pain two weeks ago. I’m currently waiting for a call back from my surgeon’s office.
For those of you with recurring pain - is it the same severity as before?
I am 72. After long period of remission the pain has returned. Tegretol (200mgx3) is controlling the pain but terrible pain with mild nausea. This side effect was never there before. I guess may this is due to old age. But the constant headaches are unbearable. Has anyone tried other pain killer together with tegretol?
I mean headaches as side effect of tegretol
So sorry your pain returned so quickly. I had almost 9 years of freedom after my MVD before the pain returned in 2006. I then had a repeat MVD (they said the teflon paddies had slipped and there was a ton of scar tissue tugging on the nerve), but my relief only lasted about 9 months.Then in 2007 I had a Gamma knife procedure, but it did nothing. My pain just got worse. Since then it has been a trial of med after med after med, with too many side effects and minimal relief. Finally settled on low dose Oxycontin (10mg every 12 hours) to keep my pain down to a 2-3 level that I could live with. Now that has been taken away from me for reasons I do not understand (other than my Dr. saying it is a bad drug) and I was prescribed the same dosage of oxycodone short acting. IT DOES NOT WORK THE SAME 
I have been miserable and curled up in bed writhing in pain for 10 days now, feeling hopeless all over again. I am also on venlafexine for depression and clonazepam at bedtime.
Sorry for the ranting about my recent turn of events. I hope you find something that works well for you…and quickly! We are all individuals and react differently.