I had MVD in November 09. My trigeminal nerve is inflamed. Their not sure why. Maybe I am reacting to the teflon.? Now I have pain in the the jaw. I my teeth feel like they are shifting. Have anyone of you had that? I'm on a steroid and neurontin right now to see if they can a handle on what's going on. If I have to have another surgery I would do it in a heart beat.
Pamela,
I’m not exactly sure what you are feeling. The surgeon said he probably caused inflammation of my nerve when he moved the vessel. I took a couple of rounds of steroids after surgery. I did develop some additional pain in my jaw and on the side of my tongue after my MVD. But it is minor. I know I would have surgery again if needed. I’m doing good. Although I have some pain, it is not bad. I take neurontin, trileptal and tylenol 3 but not as much as pre-surgery. And the meds work now.
Liz K.
The pain I had before surgery is gone. I had two blood vessels compressing the nerve. I have pain in the right side of my jaw and my tongue. My teeth (or gums feel like they are on fire.) Unfortunely it has take until now get somebody to really check to see what is going on. I now on a steady dose of steroids and today I just started taking neurontin. I can take the jaw pain. But my teeth really bother me. I have a good doctor now and she is taking proactive line with me. Liz, when did you have your surgery? Do you get a lot a relief from the meds? I know it takes time to build up in your system. I can’t take tegratol. I break out in a rash and I see double. I don’t regret having the surgery either, but if I don’t improve with time I will more than likely go for a second MVD. My doctor did say there was a possibility that I may be alergic to the teflon. I hope not.
Liz K. said:
Pamela,
I’m not exactly sure what you are feeling. The surgeon said he probably caused inflammation of my nerve when he moved the vessel. I took a couple of rounds of steroids after surgery. I did develop some additional pain in my jaw and on the side of my tongue after my MVD. But it is minor. I know I would have surgery again if needed. I’m doing good. Although I have some pain, it is not bad. I take neurontin, trileptal and tylenol 3 but not as much as pre-surgery. And the meds work now.
Liz K.
I had my surgery on Apr 27, 2009. I had quite a bit of relief but I continued to get better and after about 4 months was quite a bit better. I developed additional pain in my tongue and teeth and jaw also. I get a lot of relief from the meds now. I guess I had some relief before surgery but I was in so much almost unbearable pain. I would also repeat my surgery. I saw my surgeon yesterday. He said he would repeat the MVD should I start to get increased pain. I couldn’t take tegretol either. I take 3600 mg of neurontin, 150 of trileptal and tylenol 3 as needed. My surgeon told me the day after surgery that the teflon could have slipped out of place. He told me that the day after surgery. I wondered about allergies to teflon because I am so allergic to so many things. I hope you continue to get better. It sounds as if you are hurting more than I did after surgery. How long did you have relief before this new pain started?
Liz K.
Pamela Olson said:
The pain I had before surgery is gone. I had two blood vessels compressing the nerve. I have pain in the right side of my jaw and my tongue. My teeth (or gums feel like they are on fire.) Unfortunely it has take until now get somebody to really check to see what is going on. I now on a steady dose of steroids and today I just started taking neurontin. I can take the jaw pain. But my teeth really bother me. I have a good doctor now and she is taking proactive line with me. Liz, when did you have your surgery? Do you get a lot a relief from the meds? I know it takes time to build up in your system. I can’t take tegratol. I break out in a rash and I see double. I don’t regret having the surgery either, but if I don’t improve with time I will more than likely go for a second MVD. My doctor did say there was a possibility that I may be alergic to the teflon. I hope not.
Pamela,
I got your last email but I didn’t know how to respond to it. Email me at ■■■■■■■■■■■■■■■■■■■■. I can respond easier to an email to my address. Also, I can’t access this website from work but I can access my email.
Liz K.
i also had the surgery aug 09. it took the electric pain away but left me with 1/2 of my face numb. it feels as if i went to the dentist but the shots never wore off. I cant feel food or if i bite the side of my gum. I also am left with a pain in my high cheek bone. It feels at times like i got hit in the face. It also has left me with dry eye cause i have no feeling in the eye so i have to be careful with objects gettng in there. would i do it over again? not sure which was worse the numb feeling or the electric feeling i got but at least i could avoid the things that brought it on. the numbness is there 24/7. the back of my ear where the surgery was does get inflammed at times. it raises from the scalp and is sore to the touch. they told me it is affected by the weather and other things that bring it on. told me not to worry much but i do. dont feel the teeth but at times get the feeling of nerve pain in the tooth. i do feel sorry for you and every one else on here that suffers from this terrible pain. hope things get better for you. i have just learned to live with it and the new troubles i have now good luck
24/7
Debbie:
Did they redo an MRI or MRA on you to see if they was something else going on? The numbness I have in my right side of my face come and goes. Like you with, weather it is worse. I’m on prednisone right now and nuerontin. I’ve had this for 16 years. I’m not giving up. If I have to go through another MVD surgery I will. The pain in my jaw, the burning pain is new. My teeth hurt me all the time. My doctor is concern that I maybe allergic to the teflon. The nerve is quite enlarged. I don’t mind the numbness, that I can live with. I also have muscle spasms. I hoping with time everything will improve. I can always hope.
I had my MVD on March 15, 2010. The TN pain is gone, but I do have residual pain in my jaw and a fierce earache most of the time. They told me to expect the jaw pain and ear pain as the swelling recedes and things re-align themselves. I need a Loritab usually by 4:00 p.m… just to get relief from the jaw and ear pain. However, the TN pain seems to have gone… I know I am only 3 weeks out, but I would do it again in a heartbeat!! I had two veins compressing the nerve and needed two teflon sponges to cushion the nerve. My facial spasms are probably from MS(the doctor saw tons of scarring, plaque) and they can botox them. I do know that my tongue is still somewhat numb and my taste buds aren’t working correctly… nothing has taste! Even with all the the recovery, if the TN pain stays gone, I will consider it a complete success!! Honestly, the earache and jaw pain are NOTHING compared to the TN pain.
Hope all is getting better for you, Pam.
Blessings,
Melodye
I’m getting there. My surgeon should be calling me this week. He does feel that I do have another branch that has been affected. He is conferring with another Doctor friend of his that specializes in TN. I also have been very proactive with my meds. I have stopped being tossed around like a hot potato. I’m sticking with one neurologist and thats final. I have the book Striking Back and it has been a big help to me. I would suggest getting it. I ordered it from Amazon. Thanks Melodye for you input.
Hi Pam,
I have not had MVD yet but I also feel like my teeth have shifted. It feels like my back molars on the right side are hitting each other and not aligned. I had never noticed this before the TN began. Can you tell me more about the surgery? How are you doing now?
Jamie
I haven’t had the MVD yet but I have felt like my teeth have shifted throughout the TN. They don’t seem aligned.
I am slowly getting better. The TN nerve that goes into you jaw is what is causing the feeling that you teeth have shifted. I saw my surgeon and he also consulted with his mentor of 40 years and yes I am now affected in the jaw area now but until the swelling of the nerve goes down they don’t want to risk me getting AD. I am on very min. drugs because I don’t like the way they make me feel. I started walking 3 mile a day and have found that good theropy. You have to find what works for you. I do have a cracked molar on that side of my mouth so I am having a root canal on Monday. Then in a couple weeks a crown. Don’t let these doctors pass you around like a hot potato. Get to a good nueologist and stick with one doctor. A pain specialist is not going to do anymore than what they can do. Also get the book Striking Back. You can order on Amazon. I will have surgery again when the time is right. Any other questions feel free to write or you can call me. The intial pain that I had has been taken care of from the surgery, unfortunately it is now in my jaw. Good Luck.
Pamela
did you ever have any relief from your MVD? My neurosurgeon believes that I have something wrong inside of my nerve, damage of some sort, because my TN is so severe. My MVD showed 3 areas of compression but I didn’t really get any relief from the MVD which is why my surgeon thinks I have a damaged trigeminal nerve, but I don’t know what that means!!! All I know is thar I have the most severe case of TN every neuro and surgeon I have gone to have ever seen.
Don’t think it helps but thought I would let you know…
I wish you all painfree days,
Michaela
Yes, I was pain free for 5 weeks. The TN pain I had before surgery was not in my jaw. It was in the other two branches. That is gone. Unfortunely I now have it in the jaw area. I had gamma knife the year before and it only lasted 6 months. I don’t regret the surgery. The other problems is gone, but I am still in a lot of pain, especially when the weather changes or cold air hits my face. My surgeon is wanting to wait to do anything because I already had two procedures done. I expect near the end of the year I will have another MRA done to see what is going on. There is a condition called Anesthesia Dolorosa. It is perment damage to the trigeminal nerve. This usually happens because of an injury. I will try to upload the information for you or you can google it. Whatever you do. Do not have any other procedure other than MVD. The success rate is higher and it last a lot longer. It will tell you in that book Striking Back. My mom also had TN and it was bad. Her face use to draw down. She had MVD surgery when she was 58 and now she is 74 and still has no pain. I wish I had never gone through with the gamma knife at all. I would not hesitate to go through the surgery again. I am pretty much home bound now. I do work out of my house doing books for an ashpalt company. Oh and my mom could not take any of the meds because of way it affected her heart. I feel for the most part the medication are so you get to the point you don’t care and all you want to do is sleep. I make myself go no matter how I feel. I hope this file uploaded for you to read. Have you had an MRA done? I also learned that at Boston, Mass. it is the best place to go for TN. There are a group of doctors there that’s all they do. I will be contacting them myself before to much longer for another opinion.