I have been living with TN since 2013, I had my First DMV was in 2013, and it was a life saver. I was pain free for 16 months, when the electric shocks came back it was worse than the first. My Neurologist stated it was dangerous to do it a second time and he recommended Cyber Knife. I went to meet with the Radiologist and his explanation of what some of the side effects did not seem that bad. He said it was possible that I could has numbing. Well when you are having Electric Shocks ever 3 to 4 minutes a day numbing sounds good. I had the cyber knife and I got no relief, I had no numbing it felt like I had no relief and was in so much pain. My neurologist sent to another Neurologist who did a Second DMV, he did tell me that I might feel the numbing from the Cyber Knife after this DMV. Again I was in so much pain I wanted relief how ever that came. When I woke up in the recovery room I noticed I could not feel the right side of my face, this is the side that is effected. My doctor told me this was the side effect of the Cyber Knife. I had the second DMV two years ago and the Electric Shocks are once in a while but the numbing is so bad that any kind of cold temperature makes my face feel like I have frost bit. I can feel my face itch but I can not satisfy the itch, I have bitten the inside of my mouth so bad that I bleed. I have to wear a scarf type of mask all day. I have seen a pain Doctor who want to do some injection and I am very nervous as to what I could be left with. My husband has been so loving during all of this but I know that it is not been easy on him either. My life is no longer my life
What meds have you tried? It sounds like you went directly to surgical intervention?
I read your story. My heart aches for you. Can I ask you something? You say sometimes your face itches and that you can’t scratch it. To me that sound like your nerves trying to come back to life. Is that possible? Don’t give up hope and try to enjoy life the best you can. You are in my thoughts
I have tied so many the last one was Gabapintin. They did nothing but make me sleep and I could not drive I was on the medicine for about 10 months and nothing helped.
I was told that the itch is really not a sign of the nerve coming back but if it does the electric shock will come with it.
Oh ok. I’m still holding out hope for you
Hope here as well, and prayers. Don’t give up!
Hi Bonnie2, I read your story and I have just exactly the same thing. I had the DMV and the right side the one with TN is flat numb. I to get the itching and in the eye area. It’s enough to drive me nuts. It won’t stop and I can’t itch it. l like you. I had the cyber knife and gamma knife, and did all the drug things, gabapantin, and about ten others with it. I to am getting the electric shocks.
I can not control my mouth to hold the food in when I eat. I can not teast anything, my nose is numb and runs but I can not feel it so I go around looking like a kid with a snoty running nose. My right eye will get dry but I can’t tell until I can not see out of it anymore and then I use drops because it does not function any more due to the DMV. My wife has to tell me when to wipe my face when I eat. It is all very embarrassing. I don’t know where to go from here. My nuro says I can not have another DMV and even if I could I’m not sure I would take it due to all the complications from this one. That and the operation was just horrible. OMG 4 days of 24/7 throw up. Anyway I just wanted to let you know that I am in the same boat and I guess we just have to tough it out. I am now using Hydromoraphone for pain and it only helps but does not take it away. I will try to push for Fentinal next to see if I can get any relief. Best to you and all love. Wheels 4 legs said that.
P.S feel free to contact me by e-Mail; if you want.
I am so sorry that the procedures you have tried have not given you any relief. I wish there was a magic wand that would erase this all and give you your life back. I can promise to walk this journey with you though. Hugs
Your story breaks my heart. I’m so sorry for your pain. Are you on hormone therapy by chance? In my opinion there is a strong link between TN and Estrogen/ProgesteroneI ratio. I been suffering with TN since 11 yrs. but I control the flair-ups by keeping my hormones in check. If my blood Progesterone levels goes up TN pain comes back with the vengeance. It takes 3-6 weeks to wash hormones out of your body. If you are taking any hormones especially progesterone stop it and see what happens to your pain level after a few weeks. Hope this helps.
I believe you and the other man describing your numbness issues have Anesthesia Dolorosa. It happens in about 2-5% of all nerve altering surgeries (gamma knife, cyber knife, rhysotomies and any cutting of the trigeminal nerve. If it lasts more that about 9 months it is normally permanent. Sometime the nerve will regenerate but normally not. The only answers are drugs and motor cortex stimulator implantation-this is experimental and only large teaching hospitals are doing this procedure. It will not stop the numbness but will help with the pain and make your life more manageable. Best of luck. Fight on.
Hi Bonnie, you have described the last 9 years of my life. I too am in a position in which I’ve run out of solutions & suffer daily from facial numbness.
And also my husband has been with me through it all. I believe he suffers more than I do because he feels helpless.
Everyone tells me don’t give up & I’m sure you hear the same. When I feel really down I talk a long walk with a friend. Sometimes, that helps.
Unfortunately you & I are in the hands of neurologists & surgeons. Hopefully these doctors will find a solution as we soldier through our life. Stay positive, Bonnie.
One thing those who suffer facial pain/numbness may not know about: Trigeminal Trophic Syndrome (TPS). I recently learned about this condition when the nostril on my numb side became inflamed & eventually deformed. No doctor ever mentioned it. Found out about it on the Internet. Thanks, doc.
I had never heard of it.
But it might explain these weird outbreak pimples along the nerve line that I am getting.Might not-but the closest thing I can find.
Thanks for the info
Wishing you Pain free day
The way I understand this condition is that the word TROPHIC refers to feeding or nutrition. The damaged nerves no longer ‘feed’ the impacted areas of the face & these areas can atrophy.
I don’t mean to discourage anyone. Just informing so others can avoid what happened to me. If I had known about this problem when I first had the trigeminal nerve destroyed, I would’ve been able to prevent the nasal deformity by supplementing what my body could no longer do.
Oh My Gosh
I am always looking for more info.
You shared something that I had not seen before.
A sincere Thanks
I’m glad I could help.