I'm five month post MVD. I was completely numb on the right side of my face after MVD Surgery. Slowly I did get feelings back in my tongue, scalp, temple, chin and lower cheek. I am still numb in the teeth, gum, lower and upper lips and partially numb in the upper cheek.
For the past month I have getting intense pain in my mouth. It feels like the nerve fibers are twirling and twisting inside my mouth to a point that its going to burst. While its twisting intensely and moving around my lips and cheeks, it hurts and burns so badly. I had to check myself into the emergency room two days ago. Of course those doctors had no idea what I'm talking about.
Has anyone experience this? Are the nerves regenerating and this is how it feels? I have constantly crawling movement in my face 24/7. It's driving me crazy and it hurts a lot when it start twisting.
I started to get this at 51/2 weeks. After my visit with my surgeon on Friday he uped my Topomax to 100 mg. 50 for 3 weeks then 50 more. This would bring me to a total of 200 a day. I have gum issues for 1 week with each increase that then go away. I have had that crawly sensation off and on and have been told it does happen. I also worry about the mouth pain. Bad for two weeks, but starting to settle down. Do you have an anti-anxiety med to take? While all this is happening I know you are reading everything on the net and your fear level is escalating. Try not to. Everyone heals differently. Deep breaths. I found this wonderful 21 day meditation program that is really helping with a couple of Klonopins in between. Hang in there.
Thanks for responding. How long ago did you have your MVD? Were you numb? If so, how long did it take to go away? I am now on a steroid pack for 6 days and also taken flexeril for muscle relaxing and tramadol for pain. Yesterday was my first day taking all these meds. It does help with the pain. I still can feel the twirling, tugging, tingling of the nerve fibers in my mouth, but it doesn't hurt like before. My concern is that I feel this sensation 24/7, which seems weird. Was your crawling sensation 24/7 or does it just come and go?
By the way, I'm not taking any anti-anxiety med. Maybe I should ask for a prescription.
It started for me 5 1/2 weeks after. I had mine on September 2nd. I also tried to force a removable bridge into the left side of my mouth on Oct 18th and went bowling. I was told I could resume my normal activities, so I did. My teeth had shifted to the left. My TNis all R/S. The bridge was very tight and fit to the left side. No problem right. Wrong… I left it went bowling. I came home and rocked it out and have not been the same since. I know some of you are grabbing your heads yelling why why did she do that? I felt great. So who knows why these things switch up. The surgeon isn’t even sure that’s the problem. I had a Gamma before the MVD complicating the removal of a very large trapped blood vessel. Recovery is different. The crawling comes and goes. Keep coming here. Its a scary time I know. The steroids should help. My numbness gets better in the face. But hangs near my mouth and chin. I’ve been told that takes a long time. A lot of weird sensations in the face. Kind of used to it. As long as my mouth stops burning I’m fine. That’s getting better too. Blessings to you. I’ve been so crazy lately I hope this has helped some. Yes. Get a script for an anti- anxiety to rest your mind so your body can relax a bit.
I went to my neuro surgeon to questioned on the 24/7 facial sensations of creepy crawly, pulling, tugging twisting. He said from 3 to 6 months post mvd the nerves are waking up and that's what happening to me. He said this is normal and I shouldn't be worry. He prescribed tegretal 100mg 2x a day. This does help with relieving the pain. I just had a dentist appt. for routine 6 month cleaning and the dentist told me it is a good sign if I feel movements in my face. She also said nerves are regenerating and it can take a lot of time before my numbness will improve.
I'm just confused because I read so much online on this weird sensation and some sites said it can be AD (anesthesia delorosa), some said it's caused by nerve damage during MVD surgery. I just hope my neuro surgeon and dentist are right and that my nerves are regenerating. By the way, my neuro surgeon refuses to prescribe anti anxiety meds...not sure why. I asked him 4 times and he kept on saying no. He said try to relax and everything will be ok.
Does any one else out there experience the creepy crawly, pulling sensation after MVD? I would love to hear and how long does it take before these sensations will go away or improve?
I am still dealing with burning , crawling and intermittent pain. I had 6 days of total bliss. I thought I had come out on the other side. But the teeth pressure returned and mouth burning but not so bad. The lip stung in a different spot. The heavy numbness in my chin is gone. I can now feel my face midway down. I think my gum burning is from the Topamax . After each increase I have 7 days of hell then I’m ok. It takes 6 months to a year to get a feel for this mess so hang in there. My front tooth does not hurt anymore. My jaw aches less. No headaches. Keep a journal do you can see where things are getting better. Best wishes.