Nerve repair

Tuesday is my appt to see if he will do my mvd of my mental nerve. He’s like really the only dr that does it in the United States. From other Appts w him he’s worried about how much time has passed and my jaw can break down the middle.

In my gut I know these surgeries will help my pain. There is compression on my mental nerves they won’t tell me that but I can feel it. From the last appts there are 3 out comes. Feeling better, being number, or feeling the same. He has to agree with doing this. He did tell me he would but had to go through all these treatments.

I know I have nerve damage. Being compressed for almost 4 years there is some for sure. I will not have a normal pain free mouth the only way to pain free is being numb. I’ll take it! If surgery works pain could be reduced to a 3 or 4 from this 10. Wish me luck. I’m so nervous that it makes me feel sick

I wish you luck.
I do not want to sound trite-I know that it is hard-but if you can -and only as often as you can-try to do some deep breathing and imagine the very best outcome possible…
See yourself as you want to be.
I hope you have someone to go to the appointment with you and I hope you have all your questions and concerns written out with room for scribbled answers.

Thank you. My parents are coming with me. Then we are seeing my cute little niece. With every surgery there are risks but this guy has written books on this. I just got on pamelor and it’s helping. I have an idea of what I want my pain to feel like. I want a light sting plus every ounce of feeling came back.

I will wear that lipstick.

What I love about this forum is it’s all about face pain and even though I don’t have trigeminal neuralgia everyone cares about me like you and others. I have had people write me encouraging things who have had TN for over 30 years and I don’t get how they do it.
I love them and I love you

No surgery for me. He said it would make things worse. The surgeon did something to my inferior alevelor nerve. So basically it’s back to pain managements w meds and I’ll be trying other treatments. I would like to see if my original pain has improved. There is the hope it wil heal naturally. I’m very upset and have been crying all day

At least he was honest with you! There are surgeons out there who seem to only look for surgical solutions, it sounds like he did fair assessment and gave you a neutral opinion. I know it’s disappointing. Take the rest of today to be upset then reset your expectations and get started finding another path. Which I know is depressing, but, in many ways, it’s better the devil you know. Better to deal with what you already have than to risk making it worse.

I know you’ve tried a host of meds… have you done any eastern meds? Acupuncture? Guided meditation? Biofeedback? Alternative things… since you’re now in the realm of pain management maybe it’s time to reset all of your expectations. Have you talked to a therapist lately? That can help as well, especially now that you know your life has changed for the worse and you’re going to have to deal with that going forward.

The most important thing to remember is that you CAN deal with it. It WILL come under some sort of control you can live with, don’t give up. Be sad today and start the fight again tomorrow.

Thank you for the response. He was very honest with me. He told me if I was his family member he’d advise against it. I broke down but he was very kind and said there are other routes.

Today I’m sad. Tomorrow I keep up the fight and know there is a treatment that will help.

The surgeon who did my jaw surgery never warned me about chronic life long pain and he made me wait to long to get it repaired. The anger at him is there and the therapist will help diffuse that.

I had hope and I feel it fading. I prayed God would do the right thing, he did but just not the way I wanted.

Please pray for me and veterans of nerve pain if you read this can you give advice

Have you tried a lidocaine patch? Because you would be cutting it to fit the smaller area on your face you could wear it around the clock for several days in a row, maybe that sort of constant contact would knock the pain back some?

I started using the patch about a year ago for ATN and it’s made an incredible difference for me.

I am so sorry Glamarella.
Now it is back to square one.
I am glad that you have parents that support you.This must be so hard on
them.No one wants their child in pain.I am sure they would gladly take the
pain from you to them.
What did the doctor do to the nerve?
Did he freeze it?
I hope it helps somewhat.
I had such hope when I went to the osteopath last month.
But it has doubled my pain.
But I know it will go back down .
No choice.
Keep seeing yourself as you want to be.
Can’t hurt
Might help a bit.
I wish I could give you a big hug.
Please stay on this board.

I went to an anestilogist who gave me lidocaine for outside my chin and inside my chin. The inside only works. I don’t think they make a patch for inside the mouth. I have benzocaine at its highest strength relief for 40 minutes! Some times I put lidocaine and benzocaine on at the same time. I don’t do it often but it’s for the pain the meds can’t touch

Thank you, this is making my mom so sad. We will get there. I’m sorry your treatment caused you extra pain :cry: I’m back to relying on meds which I hate but hey they work. Not leaving here. Hang in there. I will keep you in my prayers

Thank You

Tegretol 200mg & gabapentin300mg taken twice a day controls my pain. You can try these after consulting your doctor

II am on gabapentin it does not do anything. My doctor took away my 50 mg tegretol because he thought my liver enzymes were high. I got my blood retested told him I wasn’t on it when I was the blood came back normal. That little dose controlled my pain so well now I’m on triliptal and pamelor. I like the pamelor

Tegretol is most effective drug that controls the pain of Trigeminal neuralgia on its own. I was on it alone for long time. After years when it was losing its effect slightly my neuro combined it with Gabapentin.

gabapentin often works as a “booster” for other meds, now that you’re on those other meds maybe adding back a very low dose of gabapentin will help them work?

I know I was able to half my dose of depakote once I got on a stable dose of gabapentin. I also know playing with med dose is a nightmare… just a passing thought for you.

Hi Glam
How is the pain today?
Is it being managed?

It is being managed but it’s very odd. The old school anti-convulsants are way to strong so I take a tiny dose. I cut my pill in half to 75 mg. It’s still strong on that. The gabapentin makes the pain worse with the tripital. Just got on pamelor a week ago it kicks in makes me number which I like but I don’t think it will make me numb but read it works great with tripital. I know through out the day I spread out the pamelor with the gabapentin. Gabapentin works when I take like a huge dose of it at once. It’s more tolerable then it was in the beginning.

The student nurse that took me in asked if the pain has gotten worse and I don’t know. I don’t think so but I’d have to get off some of the meds to know. I’d like to know but since the surgery was 3 years ago and even on meds it hurts and that break through pain.

What do you all think of trying to cut down on meds to find the base line pain again? I’d stop the tripital to find out because then it would be pamelor, gabapentin, bachlofen, and Klonopin

Hi about the booster I think you are right. my small dose is 1800 my pain doctor wants it at 3600. There is no way on this planet I would take that dose. My friend got burned in a fire really bad took that dose and he said he was like a zombie. I can’t afford to be like that.

I won’t take Depakote. There are a lot of health issues on that drug.

Why would you choose the trileptal as the first one off the boat?

If the pain is being managed-but just barely-don’t start reducing.
I managed to reduce and the rebound pain is brutal.
So I had to take double what I normally would take(but moderators-still within the amount prescribed)
My family doctor keeps wanting me to get off the baclofen because it is normally used for short treatments-but my face just twists with the pain.
I will watch to see what other people think.
Good Luck

I agree with not stopping trileptal first. Its my understanding that med is the go to for facial pain. In fact my neuro put me on out first and said if I didn’t get some sort of relief with the first dose to call her as ATN should respond to it, no response at all would mean something other than nerve damage.

I take depakote for neuro complicated migraines. I feel like it helps with the ATN as well. In combo with gabapentin I’ve been able to drop the dose to 250mg once a day. I feel like it could go lower but the med doesn’t come smaller and technically you can’t cut the tab. I’m pretty sure the pedeactric dose will be too small and it’s actually not recommended for migraine use.

As with all meds it’s a choice between evils. Do we choose possible side effects or unrelenting pain? And it’s the great unknown because everyone responds to meds differently. My reaction to a med may be nothing like yours so its hard to judge what will happen. In many ways it’s the ultimate catch 22.