I am a patient from China and I have already introduced myself in a previous post. I had MVD surgery in March, my gums and tongue hurt before the surgery, and now two months after the surgery, I am left with gum numbness, although there is no pain, but the numbness is very irritating and frustrating. My surgeon said that some people had a remission period of up to 6 months (during the surgery the doctor said that my trigeminal nerve was compressed by an artery and had indentation).
Today I saw a article（https://journals.sagepub.com/doi/10.1177/0333102411411203?url_ver=Z39.88-2003&rfr_id=ori:rid:crossref.org&rfr_dat=cr_pub%20%200pubmed） that described that the intraoral numbness caused by trigeminal neuropathy is irreversible because it represents the death or severe damage of neurons. I feel very sad.
I can currently eat normally, have no problems chewing and swallowing, and no uncontrolled saliva comes out, I can drive my daughter to school, I can go to work and take care of my family, and I consider me to be 80% normal. Although I had brief suicidal thoughts, I was almost ready to live with numbness for my rest of life.
Sorry for saying so much, I hope there is someone here who can listen, thank you.
Hello Justin, I completely understand where you are at. I’ve had that same procedure and came out of it being numb on one side of my face and mouth. I was very upset when I woke up from the surgery to find out I was numb. My surgeon said I would get use it and I have learned to live with it. Better than the pain…right? I can’t chew on my right side and I have gotten use to it, give it some time. I hope your pain stays away forever. Good luck from Tennessee USA
Justin, you will get use to that numbness. It takes some time to get to that point but that time is quite small compared to the rest of your life. Ask yourself this: Would you trade the numbness for the pain? I doubt you would. I have facial numbness after having a Cyberknife treatment 14 years ago. Is my numbness as bad as it was in the beginning?..No. Is it still there some?..yes. Is the extremely horrific pain gone that had total control of my life now gone?..Yes, for the most part. I still get a little bit of pain with weather changes. But they are a 1 instead of the 10 level pain I experienced. I could not live with that permanently . But here I am 14 years later, with some numbness, yes, but with only occasional very low level pain that is short-lived. Your body does adjust to the numbness, just like another responder said. Stick with it, pray, have faith in God to hear your prayers. Your mind and body will adjust to the numbness and you will grow to go ahead and function and not be aware of it.
I am so sorry for your numbness. Please accept your numbness and with acceptance comes peace. I had a procedure done to alleviate my trigeminal nerve facial pain and the result was not only numbness in my left lower gum and tongue area, but tingling and pain. I have an irreversible, sometimes not easy to bare situation. Please do not be quick to choose another surgical procedure for alleviating any more of your other facial pain unless you absolutely have no other choice. You could end up with a far worse situation than you have now.
Justin, I also have had suicidal thoughts because of TN. Suicide may help me, but it would leave my family devastated, and questioning themselves, as well as being filled with guilt and questions about what more they could have done to help me. The best thing you can do is help yourself as much as possible, and ask for support from your family and loved ones. Those who love you want to help you if they know what you need. It is hard to ask for help when you don’t want to be a burden, but family wants to help if they can. Invisible pain that doesn’t get well is the toughest kind of pain for others to understand. Communication is vital, but not always available. You matter and your life is important.
Hi, Notafraid, Thank you for your encouragement, I talked to my wife over the weekend (especially suicidal thoughts) and she said she would be there for me through this difficult time, and I was very relieved.
You’ve had more surgeries than me, you’re a lot braver than me, I’ll be cautious about my next treatment, thank you
No, I’m not going to trade numbness for pain, my frustration comes from wanting to get back to the way I was before I got sick, I’m going to give up this greedy thought so I’ll be at peace, thank you, Jimmy
Jimmy, This is the way I thought too. I went through microvascular decompression surgery. Didn’t help. Stereotactic radio surgery. Helped after a year for two years, waited two years, did it again with high hopes of no pain, and it failed leaving me in constant pain, worse off than before I got it. I was one of the small percentage who the procedure didn’t work the second time around. I cannot get it again, or it could leave me in worse pain. All that is available now, are the prescription drugs I have been taking, with the addition of opioids. I do not know if my pain would have grown even worse without that last surgery. I will never know, but I do know this numbness and associated pain would not be here. My pain continues to get worse. I use cannabis CBD vaping, and rest a lot. Tramadol, hydrocodone at night for sleep. I drink a martini in the late afternoon - ahhhh - just one. Feel so bad for people who must work to supply for a family.
Justin, I am sorry for your gum numbness. I had MVD thirteen years ago and was left with the complete left side of my face (includes top of head, gums, lips, etc.) completely numb. At that time I also noticed I had a rather unpleasant constant burning along with the numbness. However, the intense pain I had be experiencing was gone! What a relief that was! Fast forward to today. I am so used to the burning that I hardly am aware of it.I have made several changes in my life to adjust to the numbness. At home I eat with a bibb because food drops easily (remember, only half my lips can feel) and I have encouraged my family and friends to help by telling me when I have any food left on my face or clothes, etc. This is a small price to pay for the relief I have from TN. I wouldn’t change a thing about having the surgery. Give yourself some grace and time to adjust. Attitude does make a huge difference. I am thankful to be as good as I am. I wish you well and hopefully you will become as thankful for all the blessings you have in your life.
Hi colliegal
Thank you for sharing and encouraging, my discomfort seems tiny compared to your symptoms. My wife invited me to her weight loss exercises every night, and the exercise distracted me and I felt much better