HI
Just interested from anyone really, but I have been told I have Atypical TN and I am waiting for an MVD but they said it might only work on the severe pain but not on the constant pain, I am really not sure what to do.
Thanks Guys
Hi Natalie
I had MVD surgery Jan 29 2010 and I was diagnosed with A typical.2 MRI’s came back normal.Had MVD and today I am still pain free & med free.I was taking 2000 mg a day of tegretol.I was only diagnosed June 2009 so I’m very fortunate to have had the MVD and to be pain free.I hope you find relief and hope your MVD surgery is successful.Godbless 
Brian
HI Brian,
Thanks so much for your reply, I really appreciate it and it has really cheered me up. I hope you do not mind me asking a few questions? What was your pain like that made them say it was Atypical? Did they find anything when they did the MVD and did they use the teflon pads? Cant wait to hear from you. May you be pain free forever!
Best wishes
Nat xx
Hi Natalie,
I was diagnosed with Atypical TN about 6 years ago. I saw several Neurologists who put me on many different meds, but nothing that really took the pain away. I had a dull, aching pain all the time, and a hot, searing pain that was triggered by all the usual culprits; wind, chewing, touch, etc. The mean, hot ice-pick pain would happen several times a day. I had 2 MRI’s done which showed nothing out of the ordinary. I asked the neurologists about surgery, they all said it would not work in my case. After 6 years of this misery I finally had enough. I read the accounts of others on this website who had similar symptoms as me, and also had successful MVD outcomes. I searched the web to find the best neurosurgeons covered by my insurance and booked a consult. They felt confident that they could help based on the fact that I had “trigger points” on my face I could touch and bring on the pain (not that I wanted to!). I had MVD surgery about 3 weeks ago, they not only found an artery compressing the nerve, but scarred arachnoid tissue that was also causing compression. I don’t know what caused that. The good news is, my TN pain is completely gone! I am still recovering from surgery, but I feel better than I have in a long time. I am experiencing double-vision and I can’t drive until that clears up, but I am very happy I went through with the surgery. The vision will get better in time, and it is not at all typical to have double vision after this surgery… I guess I just had to be difficult!
Good luck, I hope you find relief soon. I love your kitty, BTW!
Hi Suzanne,
I am so pleased that something has worked for you and you are pain free. I hope your vision gets better soon. My kitty is called Mitten alias mi mi, she eats too much :). I do not have the usual triggers, I have constant back ground pain in the right hand side, middle branch, gums, bottom gums, chin, side of nose, sometimes half forehead, then have more severe attacks, like a knitting needles being twisted round in my gums. I have a blood vessel compressing the nerve so it gives them a reason to do the MVD, they just told me its not as good a success for ATypical but they are not totally sure what else might be there until they have a look. Whats scarred arachnoid tissue, I wonder why u had that, How was the surgery for you?
Hi Natalie
The neurologist that I had specialized in ALS (lou Gerigs) and I dont believe he hasd seen many TN cases.My pain would usually start out in my lower teeth with a dull mild ache but within 15 minutes would escalate to a terrible 10 out of 10 pain thru out my right side.This would last for minutes to hours.If I paced the house cupping my hand over my ear it would somewhat soothe it.I once had a attack for 12 hours of INSANE pain 10 out of 10.Anyways this neuro sent me to see Micheal Tymanski at Toronto’s Western Hospital.Once Tymanski found out I was taking 2000mg of tegretol and it was stopping my pain,he said deffinetly it was TN.Had MVD surgery Jan 29th.Tymanski told my wife right after surgery he had found a large blood vessel constricting my trigeminal nerve that he did pad with teflon and looked but did not find any other obstructing units.When I seen Tymanski for my 6 week post op check up.He told me it should never return.I was granted Canada Pension Disability because of this condition and I am suppose to be re-accesed in Jan 2011 but I have been doing so good I am looking to go back to work ASAP.Hope this has answered some questions and please feel free to ask any more.I wish you the best of finding relief in this terrible disorder 
Brian
Natalie said:
HI Brian,
Thanks so much for your reply, I really appreciate it and it has really cheered me up. I hope you do not mind me asking a few questions? What was your pain like that made them say it was Atypical? Did they find anything when they did the MVD and did they use the teflon pads? Cant wait to hear from you. May you be pain free forever!
Best wishes
Nat xx
I have constant burning, aching, crushing pain on both sides of my face. Have any of you experienced this and tried MVD? I am on 2100 mg gabapentin, hydrocodone, and valium and and it does help, but I have to keep increasing my dosage of gabapentin…so not sure what happens when I get to the 3600 mg limit. I have only had ths for one year, but I am already looking for other ways out. I would do surgery if I knew that anyone with my same pain has had success…I am happy for all of you that have had success with this. What I need right now is to find a dr. that has experience with Atypical TN to see if I am even in that category. I have read that it can be bilateral, but very rare. I also need to get a spinal tap, and such to rule out MS or other inflammitory diseases. I have been pregnant the last 6 months so neurologists won’t even look at me until I have my baby. From what it sounds like, I have a long road ahead of me…I would take any advice I could get. I hope you find something out, Natalie!
Hi Natalie…Your getting some great comments…this is such a great website…I only found it just a few weeks ago. I have A typical TN too…dull pain in background…triggers points for electric shock type pain etc etc…I am scheduled for MVD surgery on the 23rd this month here in San Diego. My kids are worried…they think I should try acupuncture first so I am going to give that a try for them …right now I am on 2 to 6 mgs a day tegretol…I have been on much more before I had baloon compression/glycerol injection procedures…four of those in three years and unsuccessful gamma knife procedure before that…Brian and Suzanne have given me lots of hope that MVD is the way to go…I will keep everyone posted on how it turns out…p.s. we have raised two ferrel kittens, one is black and the other is white with blue eyes…
HI Katie,
Great to hear from you! You really are having a bad time of it, and whilst you are pregnant, my heart goes out to you. Mine started off on both sides but has always been worse on the right, and is right sided now. Like you say, you just need some formal diagnosis, at least then you can see what your options are. At least you are getting some relief from the meds. Can you find out about anyone decent to see, ready for after you have the bambino? As if you wont have enough to deal with! I hope you get something sorted out. Best wishes. Nat xx
Katie said:
I have constant burning, aching, crushing pain on both sides of my face. Have any of you experienced this and tried MVD? I am on 2100 mg gabapentin, hydrocodone, and valium and and it does help, but I have to keep increasing my dosage of gabapentin…so not sure what happens when I get to the 3600 mg limit. I have only had ths for one year, but I am already looking for other ways out. I would do surgery if I knew that anyone with my same pain has had success…I am happy for all of you that have had success with this. What I need right now is to find a dr. that has experience with Atypical TN to see if I am even in that category. I have read that it can be bilateral, but very rare. I also need to get a spinal tap, and such to rule out MS or other inflammitory diseases. I have been pregnant the last 6 months so neurologists won’t even look at me until I have my baby. From what it sounds like, I have a long road ahead of me…I would take any advice I could get. I hope you find something out, Natalie!
My neurosurgeon told me my MVD would not work on the constant pain and he was right. Worked great for a year on the Typical TN, but did not work on my ATN I have also talked to people who had a MVD for ATN and were worse afterwards, than before they started. Was raised hearing this saying often. “WHEN IN DOUBT DON’T”
HI Vic,
Thanks for your comments, yes I agree this is a great site! Anyone with facial pain needs support with whatever the diagnosis is. I have felt very lonley with this condition for a long time, its nice to know I am not the only one. I am sending you lots of luck all the way from England for your MVD and Im sure everything will be fine. Did your Gamma knife not do anything? Has anything showed up on a scan? I have 3 Cats Vic, I love them so much but they are also bored of hearing about TN!
Best wishes
Nat xx
Vic Maidhof said:
Hi Natalie…Your getting some great comments…this is such a great website…I only found it just a few weeks ago. I have A typical TN too…dull pain in background…triggers points for electric shock type pain etc etc…I am scheduled for MVD surgery on the 23rd this month here in San Diego. My kids are worried…they think I should try acupuncture first so I am going to give that a try for them …right now I am on 2 to 6 mgs a day tegretol…I have been on much more before I had baloon compression/glycerol injection procedures…four of those in three years and unsuccessful gamma knife procedure before that…Brian and Suzanne have given me lots of hope that MVD is the way to go…I will keep everyone posted on how it turns out…p.s. we have raised two ferrel kittens, one is black and the other is white with blue eyes…
Hey Sarah,
Thanks for reply, yes i agree its hard choice to make. WE just live in hope I suppose. How long had you had TN before your MVD? Did you have anything compressing the nerve?
Thanks
Nat xx
Sarah Hobbs said:
My neurosurgeon told me my MVD would not work on the constant pain and he was right. Worked great for a year on the Typical TN, but did not work on my ATN I have also talked to people who had a MVD for ATN and were worse afterwards, than before they started. Was raised hearing this saying often. “WHEN IN DOUBT DON’T”
I was diagnosed with TN in the fall of 1995. Had my MVD on Jan 14, 2009. One of the arterys to the brain was compressing the nerve. It was padded off the nerve. Thing is I had complications and ended up spending 16 days in the hospital. I believe we are so much wanting the pain to stop that many head into MVD surgery not totally realizing it it major brain surgery. I did a lot of research before hand and came to believe MVD surgery was the best way to go. Thing is I have no regrets. Now that I have relapsed again, with all that happened the first time around I am not wanting another MVD done though. My suggestion would be if you are having doubts about the MVD that you research the other treatment options to see if their is one you would be more confortable with.
Natalie said:
Hey Sarah,
Thanks for reply, yes i agree its hard choice to make. WE just live in hope I suppose. How long had you had TN before your MVD? Did you have anything compressing the nerve?
Thanks
Nat xx
Sarah Hobbs said:My neurosurgeon told me my MVD would not work on the constant pain and he was right. Worked great for a year on the Typical TN, but did not work on my ATN I have also talked to people who had a MVD for ATN and were worse afterwards, than before they started. Was raised hearing this saying often. “WHEN IN DOUBT DON’T”
Just curious, where did you end up going for your surgery and how did you get them to do it since they thought it was a lost cause? I have bilateral pain and am searching for the magic cure. But I think I need the magic doctor first. I’m in ND so not many cases of this have been seen around where I live. They all say I am too young. Any advice?
Suzanne Marriott said:
Hi Natalie,
I was diagnosed with Atypical TN about 6 years ago. I saw several Neurologists who put me on many different meds, but nothing that really took the pain away. I had a dull, aching pain all the time, and a hot, searing pain that was triggered by all the usual culprits; wind, chewing, touch, etc. The mean, hot ice-pick pain would happen several times a day. I had 2 MRI’s done which showed nothing out of the ordinary. I asked the neurologists about surgery, they all said it would not work in my case. After 6 years of this misery I finally had enough. I read the accounts of others on this website who had similar symptoms as me, and also had successful MVD outcomes. I searched the web to find the best neurosurgeons covered by my insurance and booked a consult. They felt confident that they could help based on the fact that I had “trigger points” on my face I could touch and bring on the pain (not that I wanted to!). I had MVD surgery about 3 weeks ago, they not only found an artery compressing the nerve, but scarred arachnoid tissue that was also causing compression. I don’t know what caused that. The good news is, my TN pain is completely gone! I am still recovering from surgery, but I feel better than I have in a long time. I am experiencing double-vision and I can’t drive until that clears up, but I am very happy I went through with the surgery. The vision will get better in time, and it is not at all typical to have double vision after this surgery… I guess I just had to be difficult!
Good luck, I hope you find relief soon. I love your kitty, BTW!
HI katie,
I live close to Liverpool in England. They think it might work for the severe pain I get but not for the more constant, the only reason they will do it is because something showed on the scan otherwise I would have been sent to the pain clinic. I am getting a some pain on the other side also but they didnt seem to concerned about that. Im so confused about it all to be honest, everybody is so different. They also said cos Im 35 the MVD would be the only surgery they would do first because it has better success and lasts longer. It seems every surgeon has their own opinion. Im so sorry you are suffering. Have you had any scans?
Katie said:
Just curious, where did you end up going for your surgery and how did you get them to do it since they thought it was a lost cause? I have bilateral pain and am searching for the magic cure. But I think I need the magic doctor first. I’m in ND so not many cases of this have been seen around where I live. They all say I am too young. Any advice?
Suzanne Marriott said:Hi Natalie,
I was diagnosed with Atypical TN about 6 years ago. I saw several Neurologists who put me on many different meds, but nothing that really took the pain away. I had a dull, aching pain all the time, and a hot, searing pain that was triggered by all the usual culprits; wind, chewing, touch, etc. The mean, hot ice-pick pain would happen several times a day. I had 2 MRI’s done which showed nothing out of the ordinary. I asked the neurologists about surgery, they all said it would not work in my case. After 6 years of this misery I finally had enough. I read the accounts of others on this website who had similar symptoms as me, and also had successful MVD outcomes. I searched the web to find the best neurosurgeons covered by my insurance and booked a consult. They felt confident that they could help based on the fact that I had “trigger points” on my face I could touch and bring on the pain (not that I wanted to!). I had MVD surgery about 3 weeks ago, they not only found an artery compressing the nerve, but scarred arachnoid tissue that was also causing compression. I don’t know what caused that. The good news is, my TN pain is completely gone! I am still recovering from surgery, but I feel better than I have in a long time. I am experiencing double-vision and I can’t drive until that clears up, but I am very happy I went through with the surgery. The vision will get better in time, and it is not at all typical to have double vision after this surgery… I guess I just had to be difficult!
Good luck, I hope you find relief soon. I love your kitty, BTW!