Hi! Tam, I had a very nasty reaction to carbamezapine and was then put on oxcarbamezapine and helped so much with no adverse reaction.thinking of you.
Hi Tam41,
I had MVD surgery on June 19, 2014. Today is exactly one week post surgery. Surgery wasn't as bad as I thought. The first 2 days in ICU was horrible. Headaches and neck pain from incision felt like I just got ran over by a bus. I thought someone stuck a stick inside my neck because that's how it felt. They gave me Dilaudid thru my IV and that erased all the pain and put me to sleep instantly. I was also on Narco every 4 hours to control the pain. Dilaudid was on an as needed basis and I needed that quite frequently. I did nothing but sleep the first 48 hours. Day 3 was a whole lot better. I decided not to use Dilaudid and that kept me from sleeping all the time. I was able to walk very slow to the bathroom on my own. I also had to walk with a physical therapist back and forth in the hospital hallway. Once they see that I'm able to do these things on my own, I was released from the hospital by the 3rd day. The one BIG problem I have with this operation that no one told me could happen was the entire right side of my face is NUMB. This include forehead, temple, cheek, inside of my cheek, chin, tongue, teeth, lips. It's like you can get a knife and slide right in the middle of my face and the left side is perfectly fine (untouched) and the right side is totally dead. My surgeon finally came to see me and he said this can happen. He was surprised it happened, but it can happen and it will take 3 months to get the feelings back. That kind of worries me when he said he was surprised I was numb. Does this mean something went wrong? He said I had two blood vessels rubbing onto my trigeminal neuralgia nerve. One of the blood vessels was big and the other was small. I am to go see him next tuesday (day 11 post op) to remove stitches. So far, the pain from the surgery doesn't bother me. The headache is at minimum. I would give these two pain a 3 out of 10. The numbness is still there. However, my forehead, tongue and lips are only about 15% numb, which is a very good sign. My cheek, inside of my cheeck, chin and teeth are still 100% numb. I accidentall bite the inside of my cheek a lot since I don't have feeling, which caused me to have a few cancer sores. I have not had TN pain since the surgery, but I'm not sure if it's because my cheek is numb and I don't have feeling even if the pain is there? I hope this is not the case. Overall, do I regret having the MVD surgery? Not one bit. The numbness is uncomfortable, it it is nothing near the TN pain of being electrocuted or stabbed on a constant level. Where should a person decide on surgery? I think the answer lays without yourself. I never wanted to do surgery, but once the pain in constant and unbearable you are willing to do whatever it takes. MVD surgery is not as bad as one may think. I think the side effects is where the fear should be in, not the surgery it self. Find a good, reliable surgeon. That is the #1 key. My surgeon is Dr. Dong Kim in Houston, Tx. He is supposedly one of the best in Houston. He saved Gabriel Gifford's life, former US Representative, when she was shot. They flew her to Houston for Dr. Kim to operate on. I will keep you posted on the progress of my numbness. Good luck to all of you on finding relief and get rid of this TN pain for good.
Hi Laurel3865,
Glad to hear that you had a successful operation. As regards your concerns about the numbness I can just tell you about my experience 20 years ago. The key thing here is that your surgeon did identify the problem, i.e. that the blood vessels were rubbing against the nerve. It was the same with me and the operation which involved separating the nerve from the blood vessel was totally successful and the pain disappeared completely and no numbness for over 20 years! It did eventually return but hopefully in your case it will not. Best wishes
Hi TK1946,
I've done a lot reading and researching on MVD and stories about TN pain comes back after few years of successful MVD surgery. One of the stories I read was yours. The pain went away for 20 years and came back. What happened or why? I also read that if TN pain hasn't come back after 10 years post MVD then most likely a person will be pain free for life, but this wasn't the case with you. Did another blood vessel got in the way of the trigeminal nerve or what happened? If I remember correctly, you did another MVD and surgeon couldn't find the blood vessel rubbing the nerve so he did a rhizotomy (cutting the nerve)...was that correct? I've read so many stories maybe I got it mixed up with yours.
Every day i notice of getting flutters in my face where the numb areas are. I can't figure out if that's nerves regenerating back to life or is that my TN shocks? Even though the flutters don't hurt, but the back of my mind can't help but think it doesn't hurt because my face is numb. I sure hope those flutters are not TN pain. I will probably cry and get all stressed out again if they are.
Hi Laurel3865,
Glad to read you had a successful op. I hope the numbness starts to wear off a little more each day. I had something similar a lot of years ago and it did take a while for the feeling to come back in some places ( and yes there are very tiny places where it is still a little numb), but please give it time to heal, rest and take care of yourself 
.
Hi Laurel 3865,
Yes that was my story,the TN returned after 20 years. I don't know why as there was no obvious reason except as you say yourself it can happen years after the surgery. I am thankful that I had that number of years painfree. However, as you also remembered the second operation was not as successful. The nerve was cut (only way to be certain of pain relief) but the side effects are quite unpleasant and especially as I was not prepared for them. Its now over 4 months since my surgery and I still have the after effects. Worst is the "dry" eye which constantly feels like there is grit in it and feels tight and throbs especially when I close it. In addition to the numbness down the left side of my head and face I also have a very sore mouth (left side) including teeth and tongue and lips. This affects my taste and also my speech a little.While it's still better that the excruciating pain of the TN, I would recommend to any sufferer to try out every possible other remedy including prayer before considering surgery. I hope that those flutters that you are feeling are indeed the nerve ends repairing but I really don't know. I have been told that it can take up to 18 months to get some feeling back. I wish you well and that the dreadful pain stays away!
please try high dose b complex daily. my attacks have since stopped since taking them as advised by my doctor. i i still cannot believe how suddenly it stopped since i started taking it. i went from about four 200mg tegretol daily to none. i know everyone is different but it's worth a try.
HI, fellow sufferer,
My sympathies. I have just had the worst flare-up ever, and completely understand the need to moan. Just had the worst flare-up ever and it was not ending, so
out of desperation, tried a chiropractor who was highly recommended.
Within a day, the pain dropped from 10 to 3, and over the next five days,
it has been at 0-2. Maybe it has overcome the flare-up.
Is good chiropractic care available to you? Not the old forceful adjustments, but the more subtle ones that adjust cervical vertebrae, facial bones, and skull bones.
It might be worth a try.
Hi Charlotte I noticed you had mad surgery when I had an mri they didn't find anything pathological on my TN nerve can you still have the mvd op if the don't find anything on the nerve
Cranial osteopath maybe a better idea
Hi all,
I have had TN for about a year or so now, following a bout of Bell's Palsy. Has anyone else developed TN after having Bell's Palsy?
I also go to chiropractor, because my C3 gets so turned / twisted and it actually throws my skull off kilter so to speak. When they adjust, it takes the rest of the day but it subisdes almost completely. I haven't had too bad of experience with every day; however when it comes to my falre ups... i get them about every 3-6 weeks - they are horrendous. it is a mirgraine X 30. I am on carbapenzine (or however you spell it), and it doesn't seem to be working at all. I'm on 300 mg twice a day which i saw worked for some, but it hasn't for me. I go back to the Neuro on tuesday 11/10 to see if there are any other suggestions or things i can do. I have noticed that alcohol is a HUGE trigger for me. I cannot drink anymore. I have no clue how that can be related, but that is a big reason for my flare ups (even if it is 1 glass of wine, or 1 budlight). However now, even without alcohol, the flare ups are coming more frequently. I just had one start yesterday and is horrible today. But I don't knoy why. Does anyone know if stress can be a trigger, or emotional stress (i lost a close friend 2 days ago)?
Thanks,
Trish
Hi....don't know if yr sorted. But I've had triygeminal neuralgia over 10 years now 3 years ago I had a operation ( decompreson) ( my spelling is bad ). Brain surgery realy bad operation I lost over 2 stone I was weak as a kitten.....but it stopped the pain....I had it bad in my right side of my face...but now it's back .....I'm sick as a pig .....thought it was gone for good....I'm 67 now.....just wana tel you you need to take oxcarbazepine I take 2 ). 300 ml an 2 ).....300 ml gabapentin......about 3 times a day. But try 1 of each first .....I ended up in hospital once 4 years ago I had overdosed on other tablets then. .....it was them that gave me oxcarbazepine ....my doctor had never heard of it .......if you live ny me I would giv you some I'm in Blackpool .....
Up your gab. since you are already on it, may help. I take gab. 3 times a day, but have been a lot more before to control the pain.
What an awful time your are going through tam41. I have had the MVD, it has got rid of the TN, however I have other complications now but also have migraines on a weeky basis for over 55 years now and these as you say are two totally different things. If you dont want the MVD there are other options which the surgeon needs to disguss with you, however a lot of people have the MVD operation and it is a great success and it gets rid of the awful TN pain. You need some support now and I am going to Pain Management, have you thought of this? Like I said you really need some help as this awful illness makes us feel very low - so keep going back to your doctor and get some answers.
Keep in touch and let me know how you are getting on - its good to come on this site as you can see you are not alone in this battle and if I can offer, along with the rest of the people on here, any help I will.
You can't use an acu-pen on your face