Hi all, I’m back again, it’s been almost two months since my last post and almost four months since my MVD surgery.
At the moment I feel new symptoms, I can feel my left upper gingival nerve twitching in my mouth, if I close my mouth this feeling is more intense, but this twitching is painless, my wife thinks it is a sign of nerve recovery, but I am still upset, I don’t know if anyone here understands this twitch, any opinion would be greatly appreciated.
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Hey Justin,
This is Merl from the Modsupport Team.
And I’d have to agree with your wife. And this is why:
I had a craniotomy. They sliced my scalp from the centre of my hairline at the front, up over my crown at the top of my head and around behind my right ear, to gain access to my skull. Initially, the twitches of pain were REALLY intense. So much so I went to A&E thinking something was wrong.
They explained to me that when they cut through tissue, they also severe nerves. In the healing process those nerves send out messages, trying to relocate each other. That intense pain eventually reduced, thankfully, but I was still getting what I called ‘sparks’. They were much less painful, but non-the-less, still concerning. When I next saw the surgeon and told him of this he agreed with the A&E medicos, it’s a sign the nerves are trying to recover.
I’ve needed multiple neurosurgeries, with my last major surgery back in '13 and still today the area around that scalp incision still has not returned to my former ‘normal’ and I still get ‘twitching’ today. For me, I find extreme heat and extreme cold the worst. The skin naturally expands and shrinks with the temperature, but the nerves in that region do NOT cope very well with these changes. This can send my whole system into spasms and at times I’m tempted to rip my eyeballs out with a teaspoon as the pain behind them is just WOW intense. But according to the medicos that’s normal. It don’t feel normal to me.
Hope it helps
Merl from the Modsupport Team.
Hi,
I can get twitches when I smile and mainly when I’m at the dentist and have my mouth open. They aren’t painful but I try to put it down to using muscles I don’t usually use because of the pain. They can also be more intense when my mouth is closed afterwards for up to 10 mins.
On the positive side, at least they aren’t painful (and hopefully never will be). I appreciate they can feel uncomfortable when they happen and that apprehension or anxiety can begin because, could they be the start of that torturous pain again?
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Hi Justin,
I experienced something similar when I had my MVD surgery - tics and tingling around my eyes so much that, at times, I had trouble seeing, and others could see the tics around my eyes. I went running to my neurologist and was assured that it was expected following the surgery.
The way it was explained to me is that, yes, the major nerves are cut, but your brain really hates it when there is an area on the skin or other places that it cannot feel. The smaller nerves around the area affected by the MVD will reroute themselves and give you a fundamental perception of that area back to lesser or minor degrees. The twitching is part of that healing process. I had my surgery in 2017, and it took me a whole year to get to a stable recovery place. I still get twitching on the surface from time to time, and there are a couple of places on my face and head that are just weird. For example, if I touch my right temple, a spot on top of my head has a strange burning sensation. There are a couple of other places with similar odd reactions, but overall, it has diminished enough that I do still notice the occasional tingling or twitching when some part gets over-ambitious, and I am told that for most people, it goes away almost entirely within the first year.
Feel better,
Riza
Thank you Merl for always replying to my posts and giving detailed analysis and opinions.
I went to the hospital today and met my surgeon. His point of view is the same as yours, and it’s a sign of nerve growth, which gives me a little relief.
But this twitching, tugging, and spasm of the nerves is preventing me from concentrating on my work, is there any medication to recommend?
I have the same thing happen. Nerves or muscle spasms, I can never be too sure.
Hey Justin,
Apologies for not responding earlier, I had a family emergency to deal with and ‘now’ has been the first time I’ve been able to get online.
This really is something that you need to discus with your medical team. Often it can be termed as “Normal healing” pain (it sure doesn’t feel normal to me) and because of this, some medicos are less than just reluctant to be masking it with painkillers. When the scalp is cut and joined the cells that are usually on the inside are folded outwards, exposing the nerves. I touched them with a hair comb one day… …OMG… it was like someone dragging a 240volt live wire across my skull. I only did that once 
For some people a low dose tricyclic antidepressant can be of benefit. Some people can get relief from gabapentin or Lyrica, but for others the side effects with some of these medications can be unsettling and for some overwhelming. It really can be a case of trial and error to establish what works best for you as an individual. I have a friend who swears by Lyrica, for him it works wonders, for me that stuff sends my whole system for a spin.
Your medical team will know your medical history and know what medications you are presently taking. Mixing medications or adding additional substances can be VERY risky. In fact, it can be lethal if you mix the wrong medications and this is why it’s safer/better to ask the professionals, your medical team.
Hope it helps
Merl from the Modsupport Team