Trigeminal Neuralgia from nerve injury after oral surgery, looking at my options

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Is there anybody else who suffers from nerve pain brought upon by nerve injury? Specifically from oral surgery or maybe some other trauma? Any insights from anyone,even from people who don't have the same injury as mine would be great.

I suffer from nerve pain in the form of burning with a numb chin from a oral surgery procedure 5 months ago. The nerve involved is the inferior alveolar nerve( a branch of the trigeminal nerve). The left side of my chin is totally numb, but has burning pain. The right side of my chin is regaining a bit of feeling but also painful to touch, while having burning.

I am currently on carbamazepine and pregabalin, and I have good days and bad days, but more often than not bad days.

My doctor tells me that the nerve involved was intact and not severed. I'm not sure if that's the truth but I have no idea how to find out except if the nerve was explored then repaired, which means cutting the bone again and risking more damage. Doctors tell me that there are no imaging studies that can be done to appropriately visualise the nerve.

My options are to:

1. Wait and see if the nerve heals and take medication to control the pain

Option one is conservative and there may be a chance that it will heal, but I could miss a critical timeline to repair the damaged nerve, which is generally up to 6 to 9 months, and I could possibly be left with life long neuropathic pain in the chin area which I rate as 3-5 constant pain out of a scale of 10. The pain isn't bad if it only lasted a second per day, it's the constant nature of the pain that wears me out. 

2. Have my nerve explored and repaired

Option two is more aggressive and it could be a possible cure but there are no guarantees that the pain will go away, and I could risk damaging my nerve further thus causing higher levels of pain.

3. Neurectomy

Option three is a last resort, I will be left with a totally numb chin that won't heal and for some patients, pain recurs.

I am scared as hell on what to do, I have discussed this with numerous neurologists and they are not sure what to do and they say that the decision is ultimately mine to make. But I believe that they all want to manage it conservatively. 

With option one I would settle for the pain I currently have for life if it doesn't heal.

With option two I would risk having more pain or no improvement but I could be cured.

With option three I could have a pain free period or be free from pain for life, but the pain could recur(maybe even worse than before).

 

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  • Posted

    Dear mpx,

    I feel your pain, literally.  Unless you are going through it I don't think anyone you know, family or friends, can really relate to the pain that never stops.  I have had trigeminal nerve pain for years.  It was very hard to get anyone to diagnose it but I tried the microvascular decompression surgery last July and that did not help.  No one (or doctors) can guarantee anything.  It did not help the pain and they keep saying wait, wait, wait.  It will be a year next month and they say that's how long it would take to heal.  I had dental work previously that could have caused it, two arteries pressing on the trigeminal nerve that were addressed during the surgery.  To no avail.  I am on extremely high doses of gabapentin (which helps the most), amitriptyline to help pain and sleep, is also helpful.  I tried the carbamazepine and that didn't help as much as the gabapentin.  I also have CRPS (complex regional pain syndrome) that makes nerve pain even worse.  I am so sorry you are going through this.  It seems that nothing really helps.  Killing the nerve and feeling that numbness like after dental work is an option for me also but I don't want to have that feeling either and risk making things worse.  I don't know if I am helping you at all.  There are some people who say using turmeric in pill form is very helpful.  I have not tried that.  You will probably see that in these discussions.  I will pray for your healing and full recovery.

    Sincerely, Patti

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    • Posted

      Hi Patricia,

      Thank you for the reply, relating with people on this board and seeing people like you who are so strong raises my hopes. I can totally relate with what you said about friends and family not being able to understand. A lot of the time they tend to minimize the problem by talking about their own health issues, but if they only knew how hard we have it. I am so sorry to hear that surgery didn't work for you. Have you looked into gamma knife or nerve blocks as possible treatment options? If I may ask, what specific dental work did you have that caused your pain? I will look turmeric up, I am currently taking vitamin b complex along with alpha lipoic acid and I believe the alpha lipoic acid is helping, I also pray that your pain will go away. 

       

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  • Posted

    Hi mpx I feel your pain and I'm sorry you are going through this it really is so tough. It was oral surgery that i had about 18 months ago that started my TN. It took 6 months from then to get an official diagnosis of TN2 on the left side only. It is probably one of the most awful illnesses ever because it is so constant even when the pain isn't at it's worst it is still so disruptive to life. I has taken a while but i have finally found the best dose to ease my pain. I started in a low dose and have worked up to 400mg of Carbamazepine. When I got to 400mg i was still in some pain and my neuro wanted to add pregabalin which I've used previously for chronic migraine and I really dislike the side effects so decided to stay at 400mg and just give the drug time to work. I am now pretty much free from pain this drug has helped me so much i just needed to give it time. I think finding the right drug and dose for you is imperative. I know that I wouldn't risk having further surgery and possibly saving my nerve if there was potential of an even higher amount of pain. The fact is here that there is no guarentee with the surgeries but the meds are there to help you manage the pain and you will be able to find a medication and dose that works for you it just takes time and patience. Also a big thing I found I needed is support. I didn't know what to do when I was going through a really painful spell I felt people didn't understand. Talk to people around you, go to support groups, write a journal, use heat pads (they are amazing). Just don't kerp things to yourself it makes the pain feel so much worse.

    Sending love and positive energy your way Xx

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    • Posted

      Hi Rach,

      Thank you for the suggestions, I'll keep in mind to be strict with my medicine, I tend to believe that after I don't have pain for a while that I am healed which makes me stop the medication, then I am struck with the same pain again. You're right about being patient, I guess I just want to find out whether the effect of lack of pain is from the healing or from the medication, but I should be more patient and stick to the dose that works. I also tend to get frustrated when the meds don't work, and I catastrophize, thinking that nothing will make the pain go away, but I should give it more time to kick in knowing that these meds have to build in the blood. I heard three months should be the pain free period before the medication is withdrawn so I'll stick to that.

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  • Posted

    Thank God I've found this forum. I was diagnosed with TN following ENT/Facial surgery and what even is This death pain!!!! Im on a cocktail of meds and none seem to help. Any none medical ways to relieve just a bit of the pain? Any advice would be greatly appreciated.

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    • Posted

      If you don't mind me asking, what specific procedure did you have and how long has it been since you were injured?

      TN pain is really a hit or miss, I haven't been able to relieve the pain in any way except for medication. Meditation or positive thinking doesn't help with the pain, but it does lessen the distress I feel. Keeping myself distracted helps me focus less about the pain a bit, but it's still there.

      There are waves of episodes where I am in pain but then the pain ends randomly. I have no control over when it strikes, but when it does, it often lasts for hours and I have found no method that effectively stops the pain when I want it to.

      I have noticed that medication does help ease the pain a couple of hours after I take the medication or when I follow the regimen religiously. I hate the side effects but I try to find the right dose where I can control the pain while also making sure that the side effects aren't too bothersome.

      I think with some medications the side effects are supposed to be bad at first but it gets better after some time. I read a paper published online, and you can google it too, it says that a Carbamazepine and Pregabalin combination of therapy is successful in treating TN, of course with each medication being at lower dose than if each was taken alone.

      I heard acupuncture is supposed to work as well as supplements but I'm not sure as to the effects of both.

      During the first months after my nerve injury I used a hot compress on the cheek of my affected side and I found that it sort of helped.

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    • Posted

      Hi mpx, Sorry for the delay in getting back to you.  First, to answer about the dental work I had done, I had two old crowns with root canals of my two front teeth on the top redone by my dentist about six years ago.  Shortly after that I had a rear tooth with a root canal and crown redone because of some decay.  Shortly after that I got punched in the mouth by my scared cat with his back legs (very strong, those cats!)  He jumped off of my face and it was so bad I had a very fat lip and my front teeth were sore and I needed stitches in three places on my lips.  That seemed to be a real catalyst to my symptoms growing to the point of horrible pain in my lips, my tongue, my teeth on the left side, my chin, cheek, taste buds on the left side, my left eye/forehead/ear.  It's terrible.  And chewing seems to set it off or my hair touching my face, wind hitting my face.  Stress seems to bring it on also.  It's the constant pain that wears you down.  I want to pull these four specific teeth but all doctors tell me it will not help. 

      I have discussed gamma knife with my neurosurgeon and that may be in store.  I guess it takes multiple times and also takes months to see results.  Nerve blocks for the trigeminal nerve helped quite a bit but for only a few days.  Everyone is different they say, so that could help you.  It was through a pain doctor.  I just always take my medicines all the time all day long.  I also take a muscle relaxer, Tizanidine, which helps maybe a little.  When things get bad as the day wears on I also have Norco, which is an opioid of course.  I am trying to get off of that though.  This group is helpful even though I feel so bad for all of us.  It is such a bizarre thing and doctors don't seem to have any cures. 

      Do you have family that understands a little?  Or do you have a pet?  Sometimes animals can really help with pain.  I pet sit as a job and it does help.  I haven't tried a hot compress on my face but I will try that.  I also heard acupuncture can help but when I tried to make an appointment with an acupuncturist he didn't seem to know what I was talking about and that turned me off.  I wish so much I could help more for you and everyone here. 

      You will stay in my prayers for strength and hope and healing of your pain.  And having others to relate with is beneficial also.  Talk with you soon I hope.  

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  • Posted

    I can really relate to this post as I've experienced trigeminal neuralgia after under going jaw surgery, I've had nerve blocks done, cryofreezing nerves, and also had botox as Well as been on medications and nothing works I've spent endless nights researching what can be done to help and from what I've read a neuroctomy is my last option this is the only post I have seen on online forums discussing a neuroctomy my surgeon isn't to keen on performing a neuroctomy as the nerve may grow back with neuromas I don't even care though I'm willing to take the risk to escape this nightmare I'm trapped in, just wondering if you or anyone on this thread has undergone a neuroctomy or has any information on them.

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  • Posted

    I had right sided TN for about 10 years. I suffered increasingly bad side effects so opted for surgery (MVD). This took place in Feb 2017. There was instant relief from the pain, and I had the expected facial numbness which seemed to improve over time. However, throughout the past year the numbness has increased, spreading to my lips and chin. I use a straw for drinks and have discomfort when eating and for some time afterwards. I call it numbness for want of a better word but is it if I can feel discomfort? I saw my surgeon recently and had an MRI and he says there is nothing wrong. So what is happening and why is it getting worse? How far will it spread? I am so grateful to be free of TN pain but I am scared. (I am 72 and also have emphysema high blood pressure and eczema) Has anyone experienced anything similar?

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