Severing the Trigeminal nerve

I have severe face pain to the point at which simple communication is unbearable, My symptoms are very unusual and all of my doctors(dozens) have listed it as atypical neuralgia since it doesn't fall under the traditional umbrella of trigeminal neuralgia, Not only do the pain symptoms not match but it's on both sides of my face

I have tried many procedures, burning the nerves, gamma knife, and some others that didn't do much, the only thing that has helped is numbing the nerve, though the doctor did not get the entire trigeminal nerve and I only lost sensation on my lower lip and under my eyes, I am at the point where I will take that numbness over the pain as it's unbearable.

My main question being is if I severe the trigeminal nerve V can I still communicate and appear as a normal human being, I know the facial nerve VII is responsible for movement of the muscles so I should still have control of everything, but will I have trouble with facial expressions, facial drooping, and drooling?

Lastly I'm going to consult my doctor, but since the pain is only located on my face should I have the nerves severed at certain roots or have the entire nerve severed?

Hi Torn,

It sounds like you have been through a lot. If you go to the forums there is a search bar where you can type in key words. I have read threads about severing the nerve. Here is one:

http://www.livingwithtn.org/forum/topics/cutting-the-nerve

I have bilateral Atypical TN too. I think you will find there are more of us out there then Drs seem to think. I remember when I first starting getting symptoms on the second side the Drs scared me saying that I probably have MS. There are many misconceptions out there.

I assume you have tried medications if you have had so many procedures done as well? I have had luck with medication but it keeps getting worse and spreading to new locations. Unfortunately it is progressing. I have been told by a neurosurgeon and my neurologist to stay away from all invasive procedures--that chances of success are much, much lower and it can become worse in some cases. This is a point of hot discussion for all of us ATNers. What I wouldn't give to be told something can be done for me!

I don't know much about having the nerve severed. I do know that it is the very last resort but I'm sure already know that. Hopefully someone with some experience or knowledge will chime in.

The decisions that we have to make for ourselves is completely unfair. It's like trading one evil for another. Whether it be these terrible medications or procedures that fail. I'm sorry that you are in this terrible pain and I hope you are able to find some kind of relief.

Jane

dear Torn-I am so sorry for what you are going through-it sounds horrible! I have had atypical tn,tmj and lock with some instability-also burning of half my face and head-right down the middle and it could go on for hrs and longer-and the face gum and tooth pain for weeks at a time-and I had the zaps and stabbing pain in the eyes etc.i got this from a dentst who also tore cartilage-this was 23 yrs ago-I have not had surgery and was only diagnosed a few yrs ago-a couple yrs ago I started on homeopathy-I do not know if it would help you and I can only give general info. I had small bursts of pain going up and down my face one nite for21/2 hrs and the only thing I had was a bottle of homeopathic migraine tablets and it stopped immediately. I was amazed! I have had a lot of relief from homeopathic meds for nerve pain. andi take one for sinus so that does not stress the tn.You have had surgeries so I do not know if that makes a difference or not. you can find homeopathic companies online and if you call them, some have a pharmacist to help you.as far as getting the tn severed I did see 1 positive youtube video but its a big decision and there probably are some good articles that explain the risks and benefits.i hope and pray that you can get help soon! God bless you!

when i had terrible headaches/migraines,st johns wort worked for. What homeopathic migraine relief did you use. Was it the swansons,im sure someone was talking about swansons . I just read you take something for sinus's. Does this calm the TN pain down.

erin said:

dear Torn-I am so sorry for what you are going through-it sounds horrible! I have had atypical tn,tmj and lock with some instability-also burning of half my face and head-right down the middle and it could go on for hrs and longer-and the face gum and tooth pain for weeks at a time-and I had the zaps and stabbing pain in the eyes etc.i got this from a dentst who also tore cartilage-this was 23 yrs ago-I have not had surgery and was only diagnosed a few yrs ago-a couple yrs ago I started on homeopathy-I do not know if it would help you and I can only give general info. I had small bursts of pain going up and down my face one nite for21/2 hrs and the only thing I had was a bottle of homeopathic migraine tablets and it stopped immediately. I was amazed! I have had a lot of relief from homeopathic meds for nerve pain. andi take one for sinus so that does not stress the tn.You have had surgeries so I do not know if that makes a difference or not. you can find homeopathic companies online and if you call them, some have a pharmacist to help you.as far as getting the tn severed I did see 1 positive youtube video but its a big decision and there probably are some good articles that explain the risks and benefits.i hope and pray that you can get help soon! God bless you!

As always, before mixing any homeopathic pills with precribed meds… Always consult a doctor. I had a friend hospitalized for mixing an anti depressant with St Johns wart. Some homeopathic meds have sedating effects that can interfere or further depress respiratory systems. Certainly not opposed to them at all… But many peoe do not realize how important it is to make sure there are no interactions because they consider them natural.

hi lisa! I take homeopathics for sleep and am never sedated and I have had no adverse effects from any of the homeopathics for pain etc-neither has my husband or rabbit-just gentle effective results.I agree that one should not mix st johns wort with ssris or any anti depressant-I believe that you can get serotonin syndrome which is extremely serious. I tried st johns wort once and it left me gorked-awful! you need to be very careful mixing herbs with pharmaceuticals. homeopathy states there are no side effects and no interactions with anything else you might take-it works differently then drugs-more like nanotech to encourage your body to heal itself.of course you should never leave any meds around children or pets! and of course ask your dr but chances are that he will say homeopathics are nonsense. my husbands bilat. carpal tunnel and my atn have been helped tremendously by it.

Dear torn-I think I can give you some information as to what you have to look forward to if you choose to sever the TN nerve. Over Christmas I had an incredibly severe attack and ended up in the hospital on IVs since I could not talk, eat or swallow without having stabbing/tearing responses from the V2 and V3 nerve. I had a radio Frequency ablation done on the left side of my face. It did stop the TN pain but unfortunately for me I have been left with complete left side numbness-including V1 so the numbness goes from the top of my head to my chin.

This has resulted in, among other things-inability to focus my left eye-it is not blindness but basically like looking out a dirty window, numbness in the left side of my nose so I have reduced sense of smell and never know if I have any nasal leakage. Issues with my ear has resulted in diminished hearing and my ear not draining correctly. Half of my mouth is numb so I can't feel my teeth which has resulted in poor eating ability-I have to cut all my food into small pieces and drink out of a straw because yes I drool and can not feel when I have food on the outside of my mouth. Drinking hot or cold beverages gives the illusion of it dribbling out of my mouth but it is just an illusion.

But the most difficult result has been the constant muscle spasm in my entire left side of my face. Similar the phantom limb syndrome, my face realizes that I am using my facial muscles but since it is not getting any response from the TN nerve it sends out messages trying to get a response-and those messages are constant spasms.

I am taking gabapentin 400 mg 4 times a day and Baclofen 10 mg 4 times a day but this only reduces the the intensity of the spasm. I can no longer l sleep on my left side. Cold on my face will cause almost like charley horses in my face and the muscles will stay frozen for an extended period of time. The spasms also affect my ability to see out of my left eye from the contractions it further distorts my sight. My swallow reflex on the left side has also been affected and at times I almost choke-even on my own saliva. These symptoms are all part of the dreaded Anesthesia Dolorasa diagnosis.

So this could be your future and once the nerve has been severed there is no going back. Since this happened as part of a radio frequency rhysotomy, my feeling may come back-but since it has been over two months it is probably permanent.

All this scary stuff said, at the time I feel I made the best decision for me and had some of the best doctors in the country working on me. Please give every alternative a chance before making that move-it is a game changer.

Prayers and blessings.


erin said:

hi lisa! I take homeopathics for sleep and am never sedated and I have had no adverse effects from any of the homeopathics for pain etc-neither has my husband or rabbit-just gentle effective results.I agree that one should not mix st johns wort with ssris or any anti depressant-I believe that you can get serotonin syndrome which is extremely serious. I tried st johns wort once and it left me gorked-awful! you need to be very careful mixing herbs with pharmaceuticals. homeopathy states there are no side effects and no interactions with anything else you might take-it works differently then drugs-more like nanotech to encourage your body to heal itself.of course you should never leave any meds around children or pets! and of course ask your dr but chances are that he will say homeopathics are nonsense. my husbands bilat. carpal tunnel and my atn have been helped tremendously by it.

Hamboy, thank you so much for giving us an insight into what may happen if you sever the nerve, even though you didn't. It is not something to consider lightly. We have had members tell us that although TN pain is horrendous, it is nothing compared to the pain they have after nerve severing. Although of course we always hear the most here about the negative results (the best outcomed members often melt away) I have never seen a member say that it has been helpful. Please anyone considering this, consult with RED LAWHERN first. It really is a drastic measure.