Unfortunately, it is all ‘Normal’ (if you can ever call any of it ‘Normal’)
I’ve had the joy of a few neurosurgeries, my scalp looks like a badly drawn 3d topographical roadmap, with humps, hollows and scars all over it one of which was a craniotomy and my scalp has weird sensations right through to today. Especially in the hot/cold extremes. Initially it was the scalp healing and a few of the staple holes that were the worst. I knew they’d take a while to heal but, once that all seemed Ok I was still getting what felt like pulling and what I explained as ‘sparks of extreme OMG pain that run right through to my right eyeball’
Post surgery, the first time the OMG hit, it dropped me to my knees. My wife called the ambulance and I was shot off to hospital. They did there scans, did their tests, came back and said ‘We can’t see anything of concern’ and sent me home with some paracetamol (Ugh). I had a follow up appointment with the surgeon a couple of weeks later. He explained to me that the nerves in my scalp had all been severed and it can take years for them to fully heal. He also stated that ‘…nerves misfiring is very common when they are healing, but to remember they are scalp pains, not brain pain…’ My primary brain pain is like a man with a sledge hammer trying to bash his way out. There is no confusing brain pain with scalp pain here, but often that pain that shoots through my eye can accompany the ‘sledgehammer man’ which does make me wonder if they’re not related in some way.
I’m 7yrs on from my last major neurosurgery and I still get sparks of intense pain in my eyeball. I know the pain now, I recognize it. It stops me and I need to take a minute (or 2), then it will go and I can continue on. If that pain progresses in any way, I know, for me, I need to act. Some times that ‘act’ may just be a change of activity, stop whatever I’m doing, go have some fluids, just take a minute. Then ask myself “Am I OK?” usually it’ll settle, but on occasions it’s progressed. Okay, take some meds and stop the activity. I usually give it an hour or so for the meds to do there thing. If things haven’t improved by that time or gotten worse, I’ve got a problem. Now, I REALLY have to ‘Act’.
That “clamping” that’s pretty normal too. Your whole head can go into a form of shock. The nerves, the muscles, sometimes even the saliva and tear ducts can all go into hyper/hypo and as for the eyes, well, my eyes give me absolute hell. At times I’ve been tempted to dig them out with a teaspoon just to relief the pressure behind them, it is just SO intense. Eye pain has become part of my ‘new normal’. My wife uses my eye’s like a barometer, she can look at my eye’s and know exactly where my pain is at.
Merl from the Modsupport Team