Hi all,
As many of you know, I’m in the waiting period after my third Gamma Knife surgery for the AVM in my right prefrontal cortex. Lately I’ve been having a lot of skull pain, particularly when I’m overtired, overstimulated, and even with bad weather. I’ve always had extreme skull sensitivity since my first brain bleed (2006), but lately I’m finding that the scar from one of the screw holes in the back on my head has a dull throb throughout the day. Has anyone else experienced this?
-Julia
Hey Julia,
I’m Merl from the Modsupport Team. I’ve got a few plates and screws holding my skull together. After my last surgery in '13 I had a plate which had ‘lifted’ slightly. The medicos ummed and ahhed about removing them (and they talk about doing that every time more surgery is considered) but I’ve declined. In my view, if it’s not broke, don’t mess with it. I don’t want them disturbing more than necessary. I also had what they term ‘an adhesion’, in very non medical terms, My scalp (skin) had stuck to my skull (Bone). That caused a fair bit of discomfort too, like someone pulling my hair from the inside.
I’m in Australia and the heat here (along with the cold) has a huge influence on the scalp/head sensations. I seem to ache around the plates and screws in extreme heat (90F) and extreme cold (50F). This usually progresses to an OMG type headache. I’ve found I need to carefully regulate my temperature where possible. I have what I call ‘My goldilocks zone’ ie not too hot,not too cold, but just right 
Is the pain ‘skin deep’ or deeper?
Merl from the Modsupport Team
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I would say the pain is only skin deep. It’s definitely not a headache, just a skull throb. I don’t have any plates or screws still in my head, and I’m surprised I don’t feel more pain around my scar where they drained the bleed. I don’t understand why the top back part of my skull has always been the most tender, but when I feel the ache at the lower back of my skull, I know it’s where the head frame was screwed in.
Hey @Hermione711,
One of the primary cranial nerves is the 5th cranial nerve, also called the trigeminal nerve. This nerve branches out all over the skull and jaw. There is a condition called ‘Trigeminal neuralgia’ often simply known as ‘facial pain’. Damage anywhere along these branches can send pain messages anywhere along the nerve tree. For example, one of my primary headaches is behind my eyes. I spoke to the neurosurgeon about this, and his response was “Well, that’s got nothing to do with me. I didn’t go anywhere near those regions…”. But the pain, OMG, it can be REALLY intense.
I’ve been trialled on all sorts of medications. I’ve trialled a TENS machine, I’ve trialled Botox, I’ve trialled acupuncture, etc, etc, but none of them have been my ‘key’. If a medico has suggested another option, I’ve trialled it. Personally, if I can identify a cause ie I’ve overexerted myself yesterday or spent the day in bright sunlight or been in a busy environment or not had a good night’s sleep etc. Then my acceptance of it can be a little easier. But when I cannot… Ohhh, the frustration can be HUGE.
Just know, you are not alone in dealing with all of this and if anybody ever tells you “It’s easy”, they have never been in this situation themselves. We know this because we live it too, so come chat with us.
Merl from the Modsupport Team
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Thanks, Merl! Luckily I have a very supportive family that empathises with me even if they might not fully understand what I’m going through. There are days when I tell my fiancé, “Please don’t touch my head today,” even though other days it might be completely fine. (Today I have no pain, after last week when I was super busy and felt extremely sensitive on my skull. I’ve just been able to give myself time to heal. 
)
-Julia
That’s interesting about the nerve you describe. Often if my hairdresser combs out a knot on my head I feel pain in my head and somewhere else on my body at the same time (e.g. in my arm).
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I get some weird and wonderful (not) side effects every day. But trying to draw a direct line between the surgeries and the side effects has been very difficult. What I try and look out for now is a progression of symptoms, progressively getting worse. If that’s the case, I need to act. I need a doctor.
Merl from the Modsupport Team
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