I had the lightening bolt pain before I had the MVD done on 11/13/07. My surgeon told me the surgery was a failure since I still have pain. Now I have dull pain or dull jolts of pain and it starts in my cheek or teeth. It's on the left side only. The pain radiates thru all my teeth on the left side and from my eye to under my chin and from my nose to my ear. I also have a lumpy head at the site of the surgery where the Dr. overcompensated for muscle shrinkage. I have bad pain there also now. The pain is worse when I get stressed or tired. Pain is brought on my cold, wind, talking, smiling, laughing, eating or most any movement. I have also had facial swelling on the left side for over 6 months now and my neurologist shrugged it off as TMJ although I don't eat on that side due to pain. I'm planning to get a second opinion for the swelling. Does anyone else have facial swelling with TN?
Hi Lisa, I have swellen too, but im going for second opion too. My pain sounds similar ro yours.But mine was brought on by a nightmare dentist,so im still searching,how did yours happen?
Hi Lisa - my heart goes out to you. I literally feel your pain. I had a failed MVD 2-1/2 years ago and finally switched doctors. Dr. Raymond Sekula, UPMC, Pittsburgh performed a glycerol injection on my left cheek on Nov. 20, 2013 and now I am completely off Neurontin and tegretol. I still have numbness in my left cheek and occasional twinges, but I believe when the injection wears off (which I know it will), I will get another MVD - this time from Dr. Sekula. I cannot tolerate the meds - they make me too depressed.
I don't know where you live, but not all neurosurgeons are the same.
My mvd also was not successful. I had that operation almost five years ago. I still take medication. Something is still wrong. The part where the surgeon cut my scalp took a couple of years to heal pretty soundly. Pain for me has become an almost constant enemy. Though with drugs it is considerably mild compared to the horrifying way it began five years ago before the surgery and drugs, still, there is something known as Chinese torture, where a drop of water hits a bound person on the forhead constantly. My pain is like a form of torture.
It gets worse during winter along with my mood swings and depression, but during summer, usually, I find that it goes into a more minimal state and I feel much happier when I feel closer to what a normal pain free person feels, which is…good.
Since my pain is this long term, and no longer typical, a typical answer for dealing with this condition is like smoke and mirrors to me. I have begun to think nobody knows an answer. My physicians and drug counselor seem not to know what to do with me either. I’m one of those who they need to be referred to a specialist who deals with cases like mine. Since that’s not happening, I need to again, as I have several times in the past with no success, look for another form of medical treatment for help.
Bottom line, while it’s good to be patient after an mvd, get proactive now while it is still early on in your recovery process if you are having continued problems. Rest is definitely important, but don’t let your medical specialists remove you from their radars until you are stabilized and feeling “right”.
Lisa, be sure to do a search for “facial swelling” on this site. there is a whole discussion thread on it. many of us have had this problem, & docs have blown it off. but we can’t all be crazy! there is something to it… they just don’t know what it is.
Agreed need second opinion. If you have atypical the MVD doesnt work. i have atypical and i have the Motor cortex Stimulator implanted by Dr Joshua Rosenow at northwest memorial hospital chicago il. he studied under dr. Casey (ref Kimberly) this system interrupts pain signal to brain and has helped me immensely! still on some maint. meds but nothing like before the surgery.
mine is also left sided facial pain and i thought there was no help for me but when you find the right team to work with you will know it,\..northwestern is a teaching hospital and they have all kinds of things most local drs have never heard of or do not have access to.
sometimes i have inflammation which can be common with any type of pain.
remember to keep searching for what you need. i finally found the drs who can help me after seeing at least four neurologist!
Random, lightning bolts of pain is Type 1 TN. 24/7 dull/achey pain is Type 2, or atypical, TN. I have both types, both sides, in every branch of the nerves! The triggers you describe are so familiar, and so common. Have you noticed if bending over, or leaning your head forward, is also a trigger? I personally don't have any experience of facial swelling, but I do know that it makes no difference what side you eat on... I think its the jaw movement that's the problem. When it's particularly bad, I eat soups and slushy food, so I don't need to chew at all and can swallow with as little movement as possible. You say the pain is worse when you are stressed/tired. Again, this is very common with this bloody disease. Next time you feel that, though, pay attention to what your body is doing. Do you clench your teeth, for instance, when you are stressed, because that will certainly exacerbate the pain. I find wearing a beanie hat or a scarf around my face, can help with the 24/7 pain, as keeping the area warm seems to help. And I know how hard it is to do anything when you are in pain, but if you can try and keep busy, with gentle activities, it helps. Hope this is even a little bit useful. Kia kaha (keep strong).
Hi Lisa, I have swellen too, but im going for second opion too. My pain sounds similar ro yours.But mine was brought on by a nightmare dentist,so im still searching,how did yours happen?
I'm honestly not sure what originally caused me to start hurting. I remember I would go for a while pain free then suddenly lightening bolt pain would hit in one tooth, the roots of that tooth run into my sinuses. The pain would radiate to all of my teeth and my jaw on the left side. My mom would even give me her pain meds but with no relief. I thought it was due to sinus infections and the roots of that tooth running into my sinuses. The pain got much worse though after I had a hysterectomy in 2006. I was finally diagnosed with TN by an ENT dr I had gone to for a sinus infection.
Good luck and let me know what you find out with your second opinion.
Thank you, I will google and email Dr. Ken Casey. A nurse I work with is working on finding me a neurologist in Charlotte, NC. I went to a neurologist in Winston Salem, NC and didn't care for what he said. I haven't tried any Lidocaine. The neurologist wants me to go back on Trileptal but I took 1 150 mg pill the afternoon I got home from Winston and was in bed by 7:30. I'm not sure if the Trileptal made me so sleepy or just all the running that day. I work 8 to 5 in a dr office and can't afford to be sleepy at work.
Hi Lisa - my heart goes out to you. I literally feel your pain. I had a failed MVD 2-1/2 years ago and finally switched doctors. Dr. Raymond Sekula, UPMC, Pittsburgh performed a glycerol injection on my left cheek on Nov. 20, 2013 and now I am completely off Neurontin and tegretol. I still have numbness in my left cheek and occasional twinges, but I believe when the injection wears off (which I know it will), I will get another MVD - this time from Dr. Sekula. I cannot tolerate the meds - they make me too depressed.
I don't know where you live, but not all neurosurgeons are the same.
I live near Charlotte, NC. I hate it's due to TN but it's nice having others to talk to about this.
Random, lightning bolts of pain is Type 1 TN. 24/7 dull/achey pain is Type 2, or atypical, TN. I have both types, both sides, in every branch of the nerves! The triggers you describe are so familiar, and so common. Have you noticed if bending over, or leaning your head forward, is also a trigger? I personally don't have any experience of facial swelling, but I do know that it makes no difference what side you eat on... I think its the jaw movement that's the problem. When it's particularly bad, I eat soups and slushy food, so I don't need to chew at all and can swallow with as little movement as possible. You say the pain is worse when you are stressed/tired. Again, this is very common with this bloody disease. Next time you feel that, though, pay attention to what your body is doing. Do you clench your teeth, for instance, when you are stressed, because that will certainly exacerbate the pain. I find wearing a beanie hat or a scarf around my face, can help with the 24/7 pain, as keeping the area warm seems to help. And I know how hard it is to do anything when you are in pain, but if you can try and keep busy, with gentle activities, it helps. Hope this is even a little bit useful. Kia kaha (keep strong).
Oh wow, I can't imagine having both types on both sides. I'm sorry you are dealing with all that pain. It's bad enough for me dealing with pain on one side. I have noticed bending over does make the pain worse when I'm already hurting. I look down most of the day at work and I'm sure that doesn't help at all. I do medical insurance billing, etc. I look down or stare at my computer most of the day unless I have to go downstairs to speak to someone about a balance on their account. I was keeping a pain journal to take to the last neurologist I went to. I will have to pay more attention to what I do when I get stressed. I do carry a scarf with me year round. People look at me like I'm crazy when I cover my face either with the scarf or with my hand to warm my face. They probably think I have a bad tooth and just need to go to the dentist. If only they knew or even understood when I tried to explain it. I stress a lot at work when my two female coworkers talk excessively and I'm trying to work. I've told them, as politely as possible, that stress causes me more pain and let them know they tend to talk to much. That doesn't slow them down at all and they still don't seem to understand TN or the pain of it. Thank you :-)
I had MVD Surgery almost 2 years ago. I still have shocks in my left side, not as bad as they were though. I also have dull pain all throughout my teeth and ears, nose. Everything triggers the pain. I hate being on the meds(can't drive, blurry/double vision most of the day, total loss of memory Etc.!!!!!!!!! Any bit of stress triggers it. So I try to relax by crafting/sewing.
Not sure which way to go now. I would like to be off all meds so I can have a baby before it is too late!
Wouldn't we all like to wake up from this terrible dream of ours!
prayers be will you.
paddy said:
Random, lightning bolts of pain is Type 1 TN. 24/7 dull/achey pain is Type 2, or atypical, TN. I have both types, both sides, in every branch of the nerves! The triggers you describe are so familiar, and so common. Have you noticed if bending over, or leaning your head forward, is also a trigger? I personally don't have any experience of facial swelling, but I do know that it makes no difference what side you eat on... I think its the jaw movement that's the problem. When it's particularly bad, I eat soups and slushy food, so I don't need to chew at all and can swallow with as little movement as possible. You say the pain is worse when you are stressed/tired. Again, this is very common with this bloody disease. Next time you feel that, though, pay attention to what your body is doing. Do you clench your teeth, for instance, when you are stressed, because that will certainly exacerbate the pain. I find wearing a beanie hat or a scarf around my face, can help with the 24/7 pain, as keeping the area warm seems to help. And I know how hard it is to do anything when you are in pain, but if you can try and keep busy, with gentle activities, it helps. Hope this is even a little bit useful. Kia kaha (keep strong).
I have been living with TN and TMJ since 2007. In March the pain was so bad for the first time I went to the emergency room. I was put on morphine given more meds and sent home. I went back to my neurologist and also went back to my oral surgeon. My neurologist felt the swelling was not a side effect of TN but TMJ. I spent a fortune on Chiropractors, and a mouth guard. I struggled in pain unable to work. In August someone suggested Acupuncture. I showed up with my face swollen unable to talk. He first started to treat the swelling, and put me on Chinese Anti-Inflamatory and Chinese herbs for stress. Within days, the swelling went down and the pain was not as bad. The episode started in March 2013 and finally working with Acupuncture, I am pain free. I still take Gabapentin 100mg 2x a day. I also continue to take Chinese herbs 2Xday for stress and anxiety and to sleep better. This episode started during a very dramatic time in my life. I honestly feel holding in my emotions and letting them out during sleep, by grinding and pressing on my nerves played a key factor for this breakout. My pain is also on my left side. My TN also started after a root canal. FYI, after the procedure he informed me that it was my wisdom tooth that has shifted and was mis-marked by my dentist. I guess this explains some of the damage to my nerves.
I have been living with TN and TMJ since 2007. In March the pain was so bad for the first time I went to the emergency room. I was put on morphine given more meds and sent home. I went back to my neurologist and also went back to my oral surgeon. My neurologist felt the swelling was not a side effect of TN but TMJ. I spent a fortune on Chiropractors, and a mouth guard. I struggled in pain unable to work. In August someone suggested Acupuncture. I showed up with my face swollen unable to talk. He first started to treat the swelling, and put me on Chinese Anti-Inflamatory and Chinese herbs for stress. Within days, the swelling went down and the pain was not as bad. The episode started in March 2013 and finally working with Acupuncture, I am pain free. I still take Gabapentin 100mg 2x a day. I also continue to take Chinese herbs 2Xday for stress and anxiety and to sleep better. This episode started during a very dramatic time in my life. I honestly feel holding in my emotions and letting them out during sleep, by grinding and pressing on my nerves played a key factor for this breakout. My pain is also on my left side. My TN also started after a root canal. FYI, after the procedure he informed me that it was my wisdom tooth that has shifted and was mis-marked by my dentist. I guess this explains some of the damage to my nerves.
I didn't believe my neuro about the swelling being related to TN but more and more people are saying it is related. He did give me muscle relaxer for the TMJ. What are or is the Chinese herbs you are taking? I get stressed out so fast at work and at home sometimes. I have pondered trying the acupuncture to see if it will help. A friend does that for her chronic pain and said it helps her. At this point I'll try about anything for the pain and swelling. I just worry that the pain meds will keep me from doing my job correctly and I will lose my job. I have a son turning 18 this coming Sunday and he has been accepted to NC State for aerospace engineering. Hoping and praying he gets plenty of scholarships but if not this mama may be working 2 jobs to put him thru college.
With talking to all of you and researching I believe I have Type 1, Type 2 and Atypical Odontalgia. I will talk to my dentist more about that one when I see him. Thank you all!! I’m very thankful for all of you ~ new friends who know and understand
I had Dr. Sekula do my MVD 3 1/2 yrs. ago. I thought he was great. Pain free for 3 months, no more meds from time of surgery. Then sap, I now have others terrible side effects since then. He has talked with me over the phone and says my nerve was so severly damaged and there is not much else to do. I'm 3 states from him. I traveled to his office. At that time he was with Alegheney in Pitsburg. I went to him because he trained and was in Dr. Peter Janetta's office. He invented he MVD, I believe. He had retired so Dr. Sekula took over. I believe he knew the problem and might could help me except I live so far away. And now I'm on SS and medicare. I don't think they would payfor me to go back out of state. At the time I had good insurance. My pain has gotten worse, but is different now. It's not the usual TN pain.
So just be careful. Ask him many , many, questions before. I feel I waited way to long to have the MVD. This is my 14th yr. of suffering. It is a hell only others like us can sympathize.
Good Luck.
Lisa said:
Paula said:
Hi Lisa - my heart goes out to you. I literally feel your pain. I had a failed MVD 2-1/2 years ago and finally switched doctors. Dr. Raymond Sekula, UPMC, Pittsburgh performed a glycerol injection on my left cheek on Nov. 20, 2013 and now I am completely off Neurontin and tegretol. I still have numbness in my left cheek and occasional twinges, but I believe when the injection wears off (which I know it will), I will get another MVD - this time from Dr. Sekula. I cannot tolerate the meds - they make me too depressed.
I don't know where you live, but not all neurosurgeons are the same.
I live near Charlotte, NC. I hate it's due to TN but it's nice having others to talk to about this.
Wow from i read from of all of u havin MVD is not a very good solution for this disease. BTW I’ve GN left ear for 5-6Years. Way the go Lisa ur at least twice stronger then me, hang in there Lisa. And im considerin tryin to undergo MVD procedure. But heard from all of u, That makes me thinks thrice to do MVD. Right now im undergo chinesse accupunture for meds. Yet da pain still persist…
Btw if i may know how much da cost u’all paid for a MVD procedure.
In ma country (indonesia) it cost around a thounsand USD$
