Post craniotomy (>1 year) skull pain - recommendations?

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Hi all,

I had a craniotomy 2/21. I still have skull pain near my ‘dents’ where the bone flap was cut (right frontal lobe). And once it starts, the pain seems to spread, almost like a migraine. (I guess just because nerves are all connected? Idk) The pain is becoming more frequent and is affecting my life and work.

Both my neurologist and neurosurgeon have said this is just something that sometimes happens. Both have suggested OTC pain creams and pills but not really anything specific.

I’m up to taking about 1500mg of acetaminophen on a near-daily basis, and it’s not making it go away. I’ve tried numerous creams, and they aren’t really helping so far.

Has anyone tried anything that’s worked? Is there anything you’ve noticed that makes it better or worse (e.g., caffeine or certain foods) for you? I’m willing to try just about anything. Open to suggestions from any culture, too, even if I have to ship from overseas (I’m in the US).

I don’t have a lot of money, but I’m willing to spend a bit on anything that’s safe and effective. I just want something that will make this more tolerable for me.

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Welcome, I hope we are able to help you out! I did not have a craniotomy so can’t really speak from specific experience. I am in Canada and we have pain clinics, where ht staff specializes in chronic pain. It might be worth checking to see what is available in that specialist area. I would think some folks will chime in with their experiences. Take care, and sorry I couldn’t be more help, John.

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Hey Zanza,
Welcome to Ben’s Friends.
I too have had a craniotomy and I too get a radiating ‘pain’. Some dr’s were of the opinion it was the bone and nerves healing, but even years later that radiating pain still occurs. There was a bit of a debate over whether it was skull or scalp or something deeper. I had a neurologist treat the area with a local anaesthetic, numbing the scalp and the pain continued, so his opinion was that it was deeper. His opinion was that it maybe related to damage to the arachnoid webbing. When I brought this up with the surgeon he was… …let’s just say less than happy. He took my questioning as me questioning his work, his professionalism, but I was looking for answers, not blame.

It was suggested it could be muscle tension, so I had multiple Botox treatments and trialled a TENS machine. I trialled manipulative physiotherapy, Bowen therapy, acupuncture, hydrotherapy none of which worked for me. One dr suggested it could be food allergy related so we went through a controlled diet regime. It wasn’t food related. Then they said it was all stress related and was given all sorts of medications, heart meds, epilepsy meds, psych meds etc. Then came the ‘Nerve Pain’ and the meds related to that. But none of them were my key.

For me, when that ache starts I know, it’s going to progress. Sometimes that radiating spread is slow and a simple change in my activity can reduce it down. Sometimes that spread is rapid and I need an opiate with acetaminophen to dull it down, but sometimes it hits like a freight train and that’s when I need medication and a darkened/silent room. This is how I ‘try’ to manage. I say ‘try’ because I’m not always successful, but ‘try’ is about all I can do. Try to manage the best way I can.

Hope it helps
Merl from the Modsupport Team

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Thanks, John! I’m in the US, and I don’t know if any pain clinics here. Also, doctors have become extremely wary of giving any pain medicine at all in recent years. I had a recent fall in the shower (cracked the wall tile) and either a very bad bone bruise or a hairline fracture in my arm - was in bad pain for weeks, and the urgent care doctor refused to give me anything. She basically just shrugged. It’s been a similar experience so far with this.

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Hi Merl,

Thank you for the reply. I’m so sorry that this has been your experience. It sounds miserable. I’m fascinated by all the different things that you’ve tried. It’s a bit disheartening that no one takes this seriously. Both my neurosurgeon and my neurologist suggested OTC NSAIDS or pain creams, and none of it is really helping. Just getting worse. I’m in pain nearly every day, now. It radiates to the top of my head, across my forehead, the bones around my eyes, down the side of my face, and into my jaw.

I’m not sure where you are, but I can only assume that doctors here have come under scrutiny for prescribing opioids for any reason because at ANY suggestion of discomfort, their entire mood shifts. I know there are some people who are what they call “pain seekers”, but doctors seem to dismiss everyone now. (I don’t even like taking pills.)

My AVM was in my right frontal lobe, and they cut through some muscle by my ear (forget what it’s called) for that. Some of the worst pain of my life. Felt like someone took a metal bat to my face. And they didn’t even give me opioids for that - just like 800mg Tylenol tablets. Lol (I was so desperate for literally any relief, I took some omega 3 capsules once I got home to try and reduce the swelling. Wound up with a microscopic bleed and a couple of really bad seizures that I’m still recovering from - altered my eyesight, have trouble reading and spelling now, etc.)

A lot of times, it’s just like a constant, dull ache. But more often than not, now, it’s worse and just spreads. But I’m expected to function normally, and it’s wearing me down.

A recent Google search came upon a paper that essentially said “this exists, but no one is studying it”.

I’m not even sure what to do anymore.

I’m amazed at how much you’ve done to try and treat your pain. I’m sorry for what you’ve gone through, but I genuinely appreciate you sharing. It eliminates a lot of trial and error on my part, which is extremely helpful. Thank you.

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The members of the modsupport team are from all over the world. I just happen to be in Australia, not far from the city of Adelaide. ‘Opiates’ have become a dirty word here too, with Dr’s trying to minimise their use. That’s been part of why I’ve been through all of the other options open to me to manage my ongoing pain and symptoms. If there is another option, I want to try it. If it works fantastic, but what I’m not doing is trialling the same failed treatment options over again. And if there are no adequate treatments left open to me, it would be inhumane to deny me pain management.

Truth be told I hate the damn things. They mess with my insides. They mess with my mind. They numb the pain, sure, but they also numb me. I’m not supposed to drive whilst on them, so my use of them is kept to a minimum anyway. I’ve been accused of being a drug seeker before and it lights my fuse every time. I don’t take the damn things because I like them, I take them because I NEED them.

One of the many diagnosis I received was a condition called Trigeminal Neuralgia. The head and its functions are controlled by 12 cranial nerves. The 5th cranial nerve is the Trigeminal nerve. An irritation or disturbance of that nerve (or it’s branches) can cause a condition known as Trigeminal Neuralgia. In performing a craniotomy those nerves and their branches simply must, at the very least, have been irritated, if not severed. So, I was not surprised when given that diagnosis as any head pain of unknown origin ‘could’ be considered Trigeminal Neuralgia.

You say that my sharing “eliminates a lot of trial and error on my part” Now, I have to disagree with you on that point. I have been on this neurosurgical journey for over 20yrs and had headaches for 20yrs before that. One thing I have found is that what may work wonders for one person maybe of very little use to another. Some people swear by a TENS machine and if that works for them, that’s great, but it didn’t work for me. I have a friend who’s gotten great results on a particular medication, but that med sends me loopy, it doesn’t suit me. We are all very much individuals and so are our needs and treatments. So trying to compare, that’s really difficult.

The number of times I’ve heard “Well, my friend [add a name] she gets headaches and she swears by [Add a medication or treatment]. Works wonders she says…You should try it” and most people say it with the best of intentions, but sometimes I just want to yell “What? do you think I haven’t tried already???” But I just smile and agree 'I might just try that…"

Merl from the Modsupport Team

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Haha True, true. But I think I’ll forgo the diet elimination phase, unless others suggest it helped them. I have a pretty restrictive diet as it is. (Longtime vegan.)

I’m very curious about the cranial nerves, now. I plan to do some research on this. I wonder if they line up with what I’ve been experiencing.

I’m really sensitive to a lot of medications. They tend to make me quite sick. But I’m at the point where I’ll try just about anything.

Un/fortunately, today is a holiday. So I can’t reach my doctors, but I also don’t have to work.

If one of my doctors will say least help me with work accommodations (we have a job protection law here called FMLA), then that will alleviate some worry about it. But some doctors REALLY hate paperwork and will do anything to avoid it. Lol

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Hi Zanza, I had two craniotomies for AVM and seizures ever since (let’s just say I’ve been living with this for a loooooong time–almost 50 yrs.)
The pain you described hasn’t been a big factor except that related to my seizures. So I can’t speak to your pain-- only say I hope it goes away.
Please let me know about any non-Western meds/supplements you find. I’ve found a fair amount of arrogance from docs when mentioning it. Yet my gut tells me there may be something to it.
I really hope your pain subsides. Can you sleep at night?
GAW

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Zanza, I forgot to say that the emotional aspect is something I can definitely relate to. Although I can’t give advice I can say that the support you get for that here is amazing.
The emotional dimension for me has been as big or bigger issue than the physical.
You seem to have a good head on your shoulders, (that came out as a lousy pun so insert some imogee here) What I mean is that you are smart and wise.
That will help in the emotional area but at times it made it worse for me. I would try to think/reason my way out of it. “If I can only have more willpower”…
Sometimes that approach backfired. I’d say, “There must be a solution!”…
I actually turned to buddhism/meditation to be more accepting of myself in the present moment. Prayer/religion works for lots of people. I’m not recommending that. I’m just saying that there may be lots of approaches that may be better than blame/shame.
I may be talking way too much. Anyway, I’m pulling for you that your pain goes away soon. GAW

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Ahh, I just want to clarify a little, it wasn’t so much ‘diet elimination’ but rather identifying possible food triggers. Some people can have a reaction to some food additives or specific food types. For example there’s a group of foods called ‘Amines’. Amines are found in every food group from sweets and chocolates to vegetables, nuts and dairy. So it’s not so much a case of removing a whole food group but rather specific foods within each group.

I hope that makes more sense.
Merl from the Modsupport Team

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I’ve had neuralgia after craniotomy, they prescribed me antidepressant (amytriptiline) low doses are are quite effective in treating pains.

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Hi
I had my first craniotomy in 1975. I had a lot of skull pain, but I found an Osteopath, that does cranial manipulations, and acupuncture. He got rid of my headaches and sizers.