I have had 2 MVDs. The first in '98 and the second in '06. Pain came back in '07 and then I had a failed stereotactic procedure. Have struggled with various meds, bad side effects and inadequate pain relief since then. Currently entertaining the idea of another MVD, but have never heard of anyone that has had more than 2. Anyone??
If you are willing to travel to Dr. Ken Casey, he will answer the question to this post.
Even if you are not able to travel, he may be able to help with your question.
He is my TN Guru - has done do-overs for his patients and for others
Done it since 1970s. I flew to Michigan to get it done. He has done Thousands of MVDs.
Any questions, email me at ■■■■■■■■■■■■■■■■■■■■ Kimberly
I had my third mvd, this time with rhizotomy so they cut the nerve, about 6 weeks ago. It was my third in 20 months. Every recovery has gotten worse and worse. I still have pain where I’m not numb which totally sucks.
So sorry to hear that you still have pain...especially after the nerve has been cut. Do you mind saying where you had your proedures? Do they think the pain will get better? Are you still on meds? In what area are you numb? Sorry for all the questions...but i am getting desperate.
HCal said:
I had my third mvd, this time with rhizotomy so they cut the nerve, about 6 weeks ago. It was my third in 20 months. Every recovery has gotten worse and worse. I still have pain where I'm not numb which totally sucks.
I totally understand. I an open book so ask away. My first two surgeries were with a fantastic surgeon in The Woodlands, TX name Dr. Zubay. After those failed we discussed gamma knife, which he doesn’t do, so I found DR. Dong Kim, head of Mischer Neuroscience Center for Memorial Hermann hospitals. He also was Gabby Giffords surgeon when that psycho shot her in the face, and she can walk and talk! We decided I was a candidate for gamma knife so we proceeded with that. It was horrifying for me. I had a 14 minute long seizure while they were putting the metal frame on my head so they couldn’t go through with the procedure. They had to reschedule and put me under to do the procedure. I waited several months with no relief. We discussed gamma knife a second time, but my doc felt cutting the nerve was a better option since my nerve has been through so much and not responded to anything. This surgery and recovery has been the worst of all of my surgeries quite honestly. I was taking 3 gabapentin four times a day plus 4 tegretol a day. I’m just starting to wean off the tegretol. I’m down to two. I’m not sure what pain is surgery related and will get better, what issues are related to my high doses of medication (I also have dilaudid, norco, and Vicodin at home to use when needed and I take xanax three times a day plus other meds for other issues), and what issues may still be tn related. I’m calling my surgeon tomorrow to try to work some things out. I’ll let you know how it progresses. I’m currently numb from below my cheekbone to my chin on my left side. The most noticeable numbness is my chin/lip and the tip of my tongue. All on the left side. You could draw a line through the center of my face and no numbness crosses to the right side at all. They said they can’t numb my eye, for obvious reasons, but that’s where I’m having the most pain right now.
Hi, I had my MVD in November last year, I was only pain free for a month, the pain came back more severe and intense than ever, I asked my surgeon if he would do it again, he said a definite no…he said my only option now is the gamma knife, I don’t fancy that option at all, so if my pain returns, I will look for a different surgeon, I would definitely have it done again, if you can find a surgeon, you try it… Please let me know how you go… I am on 800mg of tegretol, I feel okay, no pains at the moment… But wish the operation had worked. Anne
So sorry to hear you only had a month free of pain. I had almost 9 blissful years and then only 9 months after the second one.Then I had a stereotactic radiation procedure (like Gamma Kinife) but it did NOTHING for my pain. They said they could not do that procedure again. None of the usual meds have given me pain relief..only made me crazy, wonky, unstable, forgetful & unable to work. Now I just live day to day on pain meds. Not much of a life. I have become pretty much a recluse...always having to cancel plans at the last minute d/t unanticipated pain :(
Peace to you & hopeing your pain stays away.
anne morris said:
Hi, I had my MVD in November last year, I was only pain free for a month, the pain came back more severe and intense than ever, I asked my surgeon if he would do it again, he said a definite no...he said my only option now is the gamma knife, I don't fancy that option at all, so if my pain returns, I will look for a different surgeon, I would definitely have it done again, if you can find a surgeon, you try it........ Please let me know how you go... I am on 800mg of tegretol, I feel okay, no pains at the moment.... But wish the operation had worked. Anne
Wow. Thanks for the info. I can relate to the eye pain. Most of my constant pain is in my left eye...and that is a new pain that I did not have when I first developed TN. Originally it was only tooth and mouth pain. The eye pain started when the TN came back 9 years post MVD. It was gone for about 9 months after the second MVD, but now is back with a vengence. My eye is not dry either, in fact it tears a lots and causes me to have a runny nose...only on the left side. Very annoying, to say the least. I have not found anything helpful for the eye pain thus far (except opioids take the edge off). There is an intermittent stabbing pain at the inner corner and then a constant aching in what feels like the eyeball itself. Sometimes I have blurry vision too.
HCal said:
I totally understand. I an open book so ask away. My first two surgeries were with a fantastic surgeon in The Woodlands, TX name Dr. Zubay. After those failed we discussed gamma knife, which he doesn't do, so I found DR. Dong Kim, head of Mischer Neuroscience Center for Memorial Hermann hospitals. He also was Gabby Giffords surgeon when that psycho shot her in the face, and she can walk and talk! We decided I was a candidate for gamma knife so we proceeded with that. It was horrifying for me. I had a 14 minute long seizure while they were putting the metal frame on my head so they couldn't go through with the procedure. They had to reschedule and put me under to do the procedure. I waited several months with no relief. We discussed gamma knife a second time, but my doc felt cutting the nerve was a better option since my nerve has been through so much and not responded to anything. This surgery and recovery has been the worst of all of my surgeries quite honestly. I was taking 3 gabapentin four times a day plus 4 tegretol a day. I'm just starting to wean off the tegretol. I'm down to two. I'm not sure what pain is surgery related and will get better, what issues are related to my high doses of medication (I also have dilaudid, norco, and Vicodin at home to use when needed and I take xanax three times a day plus other meds for other issues), and what issues may still be tn related. I'm calling my surgeon tomorrow to try to work some things out. I'll let you know how it progresses. I'm currently numb from below my cheekbone to my chin on my left side. The most noticeable numbness is my chin/lip and the tip of my tongue. All on the left side. You could draw a line through the center of my face and no numbness crosses to the right side at all. They said they can't numb my eye, for obvious reasons, but that's where I'm having the most pain right now.
Your eye pain sounds EXACTLY like mine. I have a boring pain in the inner corner of my eye. I get the runny nose too. Very rarely I will feel like my eye is stinging with sweat and/or dry but it passes fairly quickly. I wish I could find some good relief for the pain in the corner of my eye.
Glad to know that I'm not the only one with this weird eye pain & one-sided runny nose. And it gets worse if I try to read a lot. Hang in there...
HCal said:
Your eye pain sounds EXACTLY like mine. I have a boring pain in the inner corner of my eye. I get the runny nose too. Very rarely I will feel like my eye is stinging with sweat and/or dry but it passes fairly quickly. I wish I could find some good relief for the pain in the corner of my eye.
I had MVD in January 2013. While it helped with the shocks, it did not resolve the constant burning boring pain. I went back to my surgeon in July, and he suggested a peripheral nerve stimulator device. I had the implant in August, and it has been working very well. The device consists of leads, or wire, that are placed just under the skin to stimulate the nerve. The leads are connected to a battery that is placed just under the skin below the collarbone, and there is a wireless unit that you use to control the amount of current going to the leads. This has been used for many years for people with chronic back pain, and for certain types of migraines.
You may want to explore this as an option for pain control.
Best of luck
Christine
I've read other posts about people using nerve stimulators for TN pain....but i wonder if it is feasible for eye pain. Where would they put the leads? The skin is pretty dang thin around the eyes.
Christine said:.
I had MVD in January 2013. While it helped with the shocks, it did not resolve the constant burning boring pain. I went back to my surgeon in July, and he suggested a peripheral nerve stimulator device. I had the implant in August, and it has been working very well. The device consists of leads, or wire, that are placed just under the skin to stimulate the nerve. The leads are connected to a battery that is placed just under the skin below the collarbone, and there is a wireless unit that you use to control the amount of current going to the leads. This has been used for many years for people with chronic back pain, and for certain types of migraines.
You may want to explore this as an option for pain control.
Best of luck
Christine
Last week I was watching some of the videos from the TNA conference in Oct. they are posted to their support site. What I remember is one expert saying that a second MVD is not really an MVD but is ALWAYS a destructive procedure because they have to pry away the padding that was put there and that is destructive to the nerve. Very interesting when you think about it. So with that in mind I would think a third might be even more destructive.
Since you have runny nose and tearing with that awful eye pain I wonder if you have developed SUNCT. That would require a different treatment. Anyway, maybe worthwhile talking to a headache expert.
Personally I would go for the peripheral stimulator.
My MVD has been good for some of my mouth issues but the incision has played hell with my ON and if it doesn’t clear up I’m going to see about the stimulator.
Check out the latest from the TNA conference, you might find some good leads there.
So sorry you have having such bad pain. This has been a long run for you.
Keep Heart
Bellalarke
What is SUNCT? I have never heard of this.
http://www.ninds.nih.gov/disorders/sunct/sunct.htm
It’s a kind of headache. I think when we get one kind of ongoing miserable pain going we can trigger others as well, and one bleeds into the next. And then everything needs to be evaluated and reevaluated. Just a thought. So sorry this has been going on so long for you. Heartbreaking to go through those big surgeries then have pain come back ith a vengeance.
Keep Heart
Bellalarke
My pain constant pain is primarily in my scalp, forehead, upper teeth, and behind my eye. I have two leads, or wires. One goes up to my temple, while the other is in my cheek, between my upper and lower teeth. They cover all my pain areas, and I have several different programs to use that can adjust the amount of stimulation to either area.
This device has been a life saver for me. I had to turn it off for my recent surgery, and when I woke up in recovery, I could not believe the amount if pain I was in! Within seconds of turning it on, the pain was gone, which made me realize just how well it works!
> I’ve read other posts about people using nerve stimulators for TN pain…but i wonder if it is feasible for eye pain. Where would they put the leads? The skin is pretty dang thin around the eyes.
Christine said:.
I had MVD in January 2013. While it helped with the shocks, it did not resolve the constant burning boring pain. I went back to my surgeon in July, and he suggested a peripheral nerve stimulator device. I had the implant in August, and it has been working very well. The device consists of leads, or wire, that are placed just under the skin to stimulate the nerve. The leads are connected to a battery that is placed just under the skin below the collarbone, and there is a wireless unit that you use to control the amount of current going to the leads. This has been used for many years for people with chronic back pain, and for certain types of migraines.
You may want to explore this as an option for pain control.
Best of luck
Christine
Personally, the more the nerve is moved, the more the risk of severe nerve damage, and while I just went through a 2nd MVD 12 days ago, I am not willing to have a third.
I thought the same thing after my second MVD in 2006 .....but now after suffering for 6 years when there was no relief from a stereotatic procedure when the pain came back within 9 months .....I am nearing the end of my rope, and thus I am considering it.
saraiderin said:
Personally, the more the nerve is moved, the more the risk of severe nerve damage, and while I just went through a 2nd MVD 12 days ago, I am not willing to have a third.
Can you see or feel the leads?
Christine said:
My pain constant pain is primarily in my scalp, forehead, upper teeth, and behind my eye. I have two leads, or wires. One goes up to my temple, while the other is in my cheek, between my upper and lower teeth. They cover all my pain areas, and I have several different programs to use that can adjust the amount of stimulation to either area.
This device has been a life saver for me. I had to turn it off for my recent surgery, and when I woke up in recovery, I could not believe the amount if pain I was in! Within seconds of turning it on, the pain was gone, which made me realize just how well it works!
> I've read other posts about people using nerve stimulators for TN pain....but i wonder if it is feasible for eye pain. Where would they put the leads? The skin is pretty dang thin around the eyes.
Christine said:.I had MVD in January 2013. While it helped with the shocks, it did not resolve the constant burning boring pain. I went back to my surgeon in July, and he suggested a peripheral nerve stimulator device. I had the implant in August, and it has been working very well. The device consists of leads, or wire, that are placed just under the skin to stimulate the nerve. The leads are connected to a battery that is placed just under the skin below the collarbone, and there is a wireless unit that you use to control the amount of current going to the leads. This has been used for many years for people with chronic back pain, and for certain types of migraines.
You may want to explore this as an option for pain control.
Best of luck
Christine
Thanks Bella.....I read about SUNCT, but I only have 2 of the symptoms, so I am ddoubtful. i think it's just the TN on my ophthamic branch.
Bellalarke said:
http://www.ninds.nih.gov/disorders/sunct/sunct.htm
It's a kind of headache. I think when we get one kind of ongoing miserable pain going we can trigger others as well, and one bleeds into the next. And then everything needs to be evaluated and reevaluated. Just a thought. So sorry this has been going on so long for you. Heartbreaking to go through those big surgeries then have pain come back ith a vengeance.
Keep Heart
Bellalarke