Has anyone who suffers with “Atypical” facial pain, Not classical TN, ever undergone the MVD procedure? If so, was it successful for you? Or any other procedure that was successful? I have been in constant pain for 5 years and still have not found meds that work and I am now considering surgery. I am seeing a neurosurgeon next week for a consult. Not sure Im even a candidate yet. I do know with Atypical pain the success rates go down but I am thinking it can’t hurt for them to open me up and see if there is a compression. Any advice?
Hi Lori
I was told mine was Atypical.2 MRI’s came back normal.Seen a neurosurgeon as soon as he heard I was taking 2000mg of Tegretol a day and was stopping my pain.He immeadiatly said it was TN and told me my options.From my research the best for long term relief was MVD surgery.I had MVD surgery Jan 29 2010.I am still pain free and med free.Surgeon found a large blood vessel constricting the T Nerve inserted teflon and all is good.Please do your homework (research & research)I wish you the very best…Godbless 
Hi Brian,
Thank you for writing your story. I am so happy to hear that the MVD worked for you and that you are pain free. I have one question for you? How would you have described the pain you were feeling? I am curious if your symptoms were similar to mine. I had tried tegretol but quit after a week because the side effects were so bad. Maybe I should give it a chance again just to see if it helps. I do know from doing my research as well that doctors sometimes use tegretol as a diagnostic tool for TN because it is the “gold standard” for treating classic TN.
Hi Lori,
I am so sorry to hear you have TN. I have TN too and, after much research, I believe I have ATypical TN based on my symptoms. I was diagnosed about a year and a half ago and have been taking Gabapentin and Tramacet to relieve the pain. It is not always 100% effective, but I am still able to go to work and live as “normally” as I can. The doc wanted me to try tegretol a few weeks back so I did, but the side effects were awful for me too - I switched back to Gabapentin & Tramacet. Maybe something besides tegretol might help relieve your pain? There seems to be a few pain meds out there these days that can help. I hope you find relief soon.
Take Care,
Amber
Hello Lori,
I was diagnosed with TN in 2008, on the left side. I tried tegretol, and it helped within a few days, but then I became highly allergic to it and found out I couldn’t take any of the meds used to treat TN. I had MVD surgery in Nov. 2008 and was pain free instantly. I had a few twinges in the weeks following but nothing after that. I have had 14 surgeries, of varying types, in the past 10 years and my MVD surgery and recovery was actually one of the easier ones. I’m not saying it was super easy, but it wasn’t too bad either. Although my time from diagnosis to surgery was short, I would recommend it to anyone suffering from TN. To be on toxic drugs, with horrible side effects and still be in pain, for years, seems silly to me, when there are surgeries out there to take care of the problem. I now have ATypical TN on the right side and will not hesitate to have MVD. I wish you the best! Take care!
Thank you Amer for your reply. What are your symptoms? I have been on Neurontin (Gabapentin) before. It helped for like 3 months and then stopped helping. That is what alot of the meds seem to be doing for me. I am not on any anti-seizure meds as of now. So you are right maybe I should talk to my doc about getting back on one. The problem for me is that I really want to have another baby so I wanted to try to come off my meds but the pain has been so bad that I can’t imagine coming off. This seems to happen to me all the time. I have a son who is 2 now and I was able to come off my meds and I did okay for a little while and then towards the end of the pregnancy the pain came back with a vengeance. I just don’t know what to do. It is a real dilemma. I am so sorry that you have to deal with this disorder too! Have you ever tried nerve blocks or surgery? How would you describe your pain?
Cynthia Cross said:
Hello Lori,
I was diagnosed with TN in 2008, on the left side. I tried tegretol, and it helped within a fewHi days, but then I became highly allergic to it and found out I couldn’t take any of the meds used to treat TN. I had MVD surgery in Nov. 2008 and was pain free instantly. I had a few twinges in the weeks following but nothing after that. I have had 14 surgeries, of varying types, in the past 10 years and my MVD surgery and recovery was actually one of the easier ones. I’m not saying it was super easy, but it wasn’t too bad either. Although my time from diagnosis to surgery was short, I would recommend it to anyone suffering from TN. To be on toxic drugs, with horrible side effects and still be in pain, for years, seems silly to me, when there are surgeries out there to take care of the problem. I now have ATypical TN on the right side and will not hesitate to have MVD. I wish you the best! Take care!
Hi Cynthia,
I have had atypical pain for 5 years. My pain is mostly constant, burning, deep ache in my lower teeth, gums, face. Would you describe your pain on the right like this? I am asking because I think it is important to see if other people’s symptoms are like mine and if the MVD helped them. I agree with you on the surgery. If I had the classical symptoms and there was an obvious compression on my MRI. I would not hesitate for a second. Problem is my pain is not the classical type and harder to determine. Also my MRI is normal. It is a tough decision. But after 5 years of this I am not sure I want to live like this for the rest of my life. I am only 37 and it has already taken a toll on my marriage, relationships, life in general. Thanks for your info. Please let me know what your pain is like on your right side now.
Hi Lori
My pain would start out very mild usually in my lower teeth area and with in 15 minutes would escalate to a 10 INSANE pain and be constant no jabbing.I once had that INSANE pain for 12 hours I thought I would go outa my mind.The pain was on my right side and usually effected from my temple to my upper kneck.Please remember I had only been diagnosed in late June of last year and within 1 month the Tegretol had my pain under control.I was very fortunate. As for the side effects from Teg…I would most certainly rather deal with the side effects then the Pain.But again that is me and we are all so different.I hope the best for you and do wish you success in a pain free future…
Lori Branco said:
Hi Brian,
Thank you for writing your story. I am so happy to hear that the MVD worked for you and that you are pain free. I have one question for you? How would you have described the pain you were feeling? I am curious if your symptoms were similar to mine. I had tried tegretol but quit after a week because the side effects were so bad. Maybe I should give it a chance again just to see if it helps. I do know from doing my research as well that doctors sometimes use tegretol as a diagnostic tool for TN because it is the “gold standard” for treating classic TN.
Lori,
I know we have had a member who had MS and decided to have surgery and a compression was found. So it seems to me that it may not hurt to try. I don’t see how so many of our members stand the pain the way they do. I was fortunate to only have bad pain for about about 6 months.
I had typical TN from the beginning. But when mine suddenly escalated in one day and continued, I started having some atypical pain within two months which I understand can happen with long term TN. When I was initially diagnosed I was given tegretol and the same day the pain decreased. It was totally under control in two weeks and I was able to stay on a low dose medicine (most of the time) for 3 1/2 years. My atypical pain is more of an aching pain and a lot of pressure. But since MVD surgery, I don’t have a lot of either type pain that isn’t controllable with medicine. But it seems since surgery that I have mixed TN with the aching and stabbing pain at the same time which is what I was having for about 4 mths before surgery. Prior to that it was strictly the electrical, stabbing and sharp lightning quick jolts.
Liz
Hi Lori,
My pain is a constant ache on the left side of my face going from my temple to my neck just below my chin, including my most of my teeth. I seem to have a lots of tight tension and more direct aching just below my ear these days. All that aching accompanies the sharp shooting TN pains. Most of the pain is controllable with my meds but the meds don’t seem to control the shooting pains as much anymore and am having to take more. I definitely notice a difference when I don’t take the anti-seizure meds. It sounds terrible that the meds stop working for you after a few months. Trying for a baby is also a good reason to not take any meds and understand your concern for the baby. Man, I am sorry to hear you have to even think about making a decision between a med free baby or pain relief from TN. I cant imagine what you must be going through. What are your symptoms Lori?
Lori Branco said:
Thank you Amer for your reply. What are your symptoms? I have been on Neurontin (Gabapentin) before. It helped for like 3 months and then stopped helping. That is what alot of the meds seem to be doing for me. I am not on any anti-seizure meds as of now. So you are right maybe I should talk to my doc about getting back on one. The problem for me is that I really want to have another baby so I wanted to try to come off my meds but the pain has been so bad that I can’t imagine coming off. This seems to happen to me all the time. I have a son who is 2 now and I was able to come off my meds and I did okay for a little while and then towards the end of the pregnancy the pain came back with a vengeance. I just don’t know what to do. It is a real dilemma. I am so sorry that you have to deal with this disorder too! Have you ever tried nerve blocks or surgery? How would you describe your pain?
Hello Lori,
My TN on my right side is totally different from the left side. As a matter of fact, I’ve been having pain in the right side for about an hour and a half now and it is severe. My right side is an achy dull pain with some sharp here and there. Sometimes it burns, sometimes it aches, sometimes it shoots through my cheek and I want to shove my fingers under my cheek bone, it never hits me the same way twice. I have pain in my forehead, my nose, my cheek, my temple, my teeth and jaw and my neck with my right side. With the left side it was very classic, with pain mostly in my teeth and jaw, sharp, electric pain. When I describe it to people, I explain it like sticking a cattle prod in my mouth. That pain only lasted seconds. This right side pain lasts forever, it seems like. I wish you the best.
Lori Branco said:
Hi Cynthia,
I have had atypical pain for 5 years. My pain is mostly constant, burning, deep ache in my lower teeth, gums, face. Would you describe your pain on the right like this? I am asking because I think it is important to see if other people’s symptoms are like mine and if the MVD helped them. I agree with you on the surgery. If I had the classical symptoms and there was an obvious compression on my MRI. I would not hesitate for a second. Problem is my pain is not the classical type and harder to determine. Also my MRI is normal. It is a tough decision. But after 5 years of this I am not sure I want to live like this for the rest of my life. I am only 37 and it has already taken a toll on my marriage, relationships, life in general. Thanks for your info. Please let me know what your pain is like on your right side now.
I had MVD 3 weeks ago. I had what I thought was atypical pain - deep aching, terrible pressure on my right side with some stabbing pains in my ear and terrible sensitivity in my teeth. My MRI showed a compression, but when the surgeon went in he didn’t find a compression so he pinched the nerve. I have had my doubts as to whether the surgery has worked. I still can’t eat on that side because my teeth seem tender. If I talk and smile a lot my jaw aches. They say this can be normal while the nerve heals. I haven’t had to take any tegretol, so I’m hoping and praying this is all part of the recovery.
Jamie,
I am sorry you are still having a lot of pain. Did the surgeon give you steroids? Mine did. Someone posted about inflammation and steroids but I’m not sure if it was you.
Liz
jamie leigh said:
I had MVD 3 weeks ago. I had what I thought was atypical pain - deep aching, terrible pressure on my right side with some stabbing pains in my ear and terrible sensitivity in my teeth. My MRI showed a compression, but when the surgeon went in he didn’t find a compression so he pinched the nerve. I have had my doubts as to whether the surgery has worked. I still can’t eat on that side because my teeth seem tender. If I talk and smile a lot my jaw aches. They say this can be normal while the nerve heals. I haven’t had to take any tegretol, so I’m hoping and praying this is all part of the recovery.
Hi Lori,
I have had TN pain for the past 2.5 years. I definitely started off with classic TN but over time I think it has changed to atypical, which I have read is normal. I had 2 MRIs. The first one was normal, and I have no idea what the second one showed as I never heard back from that neurosurgeon’s office. I am having a MVD with another neurosurgeon in Winnipeg in a few days (June 1st). Although, I am scared I am also looking forward to being pain free and getting off the medications. I am currently taking 1,600 - 1,800 mg. of Tegretol a day. I want my life, and my brain back.
I will be out of commission for a while, but will let everyone know how it went as soon as I feel up to it. I would love to hear from anyone else who had a MVD. I would like to know how long their recovery time was and how they felt the first few days following the surgery.
Good luck, Lori.
BonnieG
Hi Lori,
I just had the MVD procedure on May 11, so am still recovering. I was first diagnosed with TN in May 1996 with classical stabbing, electrical shocks on my right side of my face. Very typical, could not stand a breath of air on my face, no teeth brushing, could not eat, talk, drink. I took carbamazapine (tegretol) that time and small doses brought it into control so I was able to take myself off within 5 months and stayed relatively pain free until August 2009. It came back with a sudden vengeance, starting with the electronic shock pain. I was able to control with only 4oo mg/day the first 5 months and then it quickly escalated. By April I was on 1200 mg and it wasn’t touching it so I was thinking this must be dental issues, etc. Went to my dentist who said I needed a root canal job. Thank God I went to a great doctor for this who looked at my teeth, my xrays, and listened to me describe my symptoms. He told me he could do a root canal if I wanted it but that wasn’t my problem; it was my trigeminal. So I called my neurologist and he wouldn’t see me without me speaking to a neurosurgeon first (I had refused the first time he brought it up). By then, my pain was pretty constant and just burning with no resolution. It was on the right side, through my lower jaw, up the side of my face to my ear, and under my lip, and into my cheek. My neurosurgeon heard the symptoms, and told me my options and I signed right up for MVD. I am still recovering and the only thing I have now is numbness in my face. That may or may not gone away; it is too early to tell. I was on 1200 tegretol and 600 mg. oxcarbazabine (or something like that), when I had surgery and he is slowly taking me off that; I feel I am getting my brain and life back. Post-surgery was hell as they had some trouble stabilizing me on my blood pressure but they kept me in ICU until it was stabilized. I would never consider NOT having this surgery and if I ever end up with TN again, would do this in a split second. I had two blood vessels wrapped around the nerve; don’t know if it was found in the final MRI; I didn’t really care.
Val
Hi Liz,
No steroids. How are you doing? Do you still have pain?
Jamie
Jamie,
Yes I still have pain. But for the most part it is manageable. The last two days have been worse because of the weather. I take a lot of medication. I am considering another MVD. I want to see how I do the rest of the year. Of course should it get as bad as it was last year, then I have the MVD sooner. I can live with this level of pain forever and not complain. But I am concerned about the amount of medicine I take. And also I am beginning to develop some side effects.
How are you feeling? Do you think you are getting a little better each week?
Liz
jamie leigh said:
Hi Liz,
No steroids. How are you doing? Do you still have pain?
Jamie
The pressure is gone for now and the intolerable pain. Each week gets a little better as far as strength. I’m just concerned mostly with the pain that remains in my teeth.
Bonnie,
I will keep you in my prayers. I hope the surgery goes well but most importantly I hope you wake free of the TN pain. I also had typical but about 4 mths before MVD , I developed atypical. A lot of my pain now is atypical. But most of it is controllable with meds. My surgery was not typical. I was out of the hospital in 48 hours and I didn’t suffer any surgery pain. I didn’t have any nausea. I did have a dull headache for a few weeks but it didn’t compare to my migraines. I had my surgery on Monday and I went to a bunch of garage sales on Saturday after a 2 hr drive home late on Friday night (I didn’t drive). My mother loves garage sales so I wanted to take her. But when I got home on Saturday, I thought I might die. I was so exhausted. I had the shakes. We did not go to any other garage sales for 4 weeks. I was really tired for months. I went back to work part-time the 4th week.
Liz
Bonnie Gray said:
Hi Lori,
I have had TN pain for the past 2.5 years. I definitely started off with classic TN but over time I think it has changed to atypical, which I have read is normal. I had 2 MRIs. The first one was normal, and I have no idea what the second one showed as I never heard back from that neurosurgeon’s office. I am having a MVD with another neurosurgeon in Winnipeg in a few days (June 1st). Although, I am scared I am also looking forward to being pain free and getting off the medications. I am currently taking 1,600 - 1,800 mg. of Tegretol a day. I want my life, and my brain back.
I will be out of commission for a while, but will let everyone know how it went as soon as I feel up to it. I would love to hear from anyone else who had a MVD. I would like to know how long their recovery time was and how they felt the first few days following the surgery.
Good luck, Lori.
BonnieG