Hi all, anyone with cerebral AVM treated with craniotomy?
I found to have a cerebral AVM after an epilepsy attacks in April 2018, underwent twice embolization and 1 craniotomy to remove the AVM.
Till now still taking antiepileptic medications.
Occasionally, I can feel my head with the surgical side, experience some pain? Not headache type, feel like inside my brain having a scar, that kind of pain. But it’s not always and i can still able to work. Just wonder is anyone else experience this? Is it a long term side effect from craniotomy?
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Hi & welcome to the board
I’m sure you’ll have other craniotomy members chime on this also
I got away lucky with just an embolization (almost 8 months ago) - but, the feeling you describe is quite similar to what I am experiencing. A scar type feeling where the AVM work was performed that comes in/out almost randomly
I’m calling it normal for now - since I just got back out of the ER & they did an immediate MRI & everything checked out well.
Hi Jia,
I am so glad that you posted about this because I have been experiencing this type of pain since my craniotomy 5 years ago. My case may be different to yours because our nerves endings could develop differently. This pain started very shortly after my first surgery and is essentially chronic on my scar site with a specifically tender spot by my ear. Two years later, I had some metal in my head to try to relieve the pain only to make it more intense. I have tried nerve blocks, acupuncture, botox, creams, etc. and nothing’s helped but we’re not giving up! If anyone has had this pain and knows a way to fix it, please please let us know!!!
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Yes! I have head itch where scars are from surgeries in 2000, 2003, and 2010.Its raining as I I write this and my shunt feels like it’s expanding but I know it’s all in my head 
if you have any painful or troubling sensations certainly talk with a doctor. Blessings on your road to recovery!
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Post craniotomy my scalp was extremely sensitive. It was explained to me that the nerves in the incision, which are usually not exposed, were now on the surface of scalp, as they’ve pulled the skin together to staple it closed. But that the sensations would eventually settle. I’m now 20+yrs on and although that sensitivity has reduced, it has not disappeared, but rather mellowed. Even today, If I touch the incision it is certainly more sensitive than the surrounding scalp.
Initially, I was very concerned, but the medicos were not, so I went looking for answers I had Dr’s telling me
As if I didn’t know that already, but they were meaning psychological and not physical.
These pains/sensations are very real and not just a psychological thing. I can certainly assure you Randombeggar the weather can play a huge role too (even if the medicos disagree). I’ve mentioned this to the Dr’s and they look at me as if I’ve been participating in some sort of hallucinogenic therapies 
Well, don’t I wish 
But I can feel a storm coming on better than any weather map.
Like you Jenn, I’ve trialled “…nerve blocks, acupuncture, botox, creams, etc. and nothing’s helped…”
Add to that a whole chemist store of medications but none of them were my ‘key’ either. For me now, that sensitivity has become ‘normal’ (if you can call it normal), it’s just something that I’m aware of rather than concerned about. Any changes and I’m getting it checked, but otherwise… …it’s normal.
Merl from the Modsupport Team
Merl,
Although the feeling. completely sucks, I am glad that there is another person who can relate. Have you tried any desensitization of the area like you would do with burns? Someone suggested it to me and it was one thing I never really tried.
I had my surgery in 2011 and depending on weather such as cold etc can still feel areas of my head are not the same and accept will never be the same… my scalp has lumps that i can feel and sometimes hurt, although not enough to cause me any real discomfort to be honest… at times they have caused my headaches but generally have been managed… God bless!
Hey Jenn,
That’s the great thing about ‘Ben’s’, others who can relate, because neurosurgery can be SO isolating. Luckily, not everybody ever goes through anything like this, so finding that empathy and understanding can be VERY difficult. I had sympathy by the bucket load, but that ‘Ohh you poor thing’ attitude get’s really old, really quick. Some are of the thinking it’s a bit like a broken bone… …8weeks later and all is healed. Well, don’t I wish. I’m now 8 years on from my last surgery and still today I’m symptomatic. Others often simply don’t understand it (as if we understand it all) but we don’t have a choice, we have to live with it. Ben’s gives us the opportunity to share and I can tell you it was a real ‘PHEW, so I’m not the only one’ sort of moment when I stumbled in here.
No Jenn, I haven’t. I did trial a TENS machine but that was more for muscle tension. I had one neuro convinced that, after everything had healed post surgery, any continuing pain was tension related. So he trialled multiple Botox treatments, to no avail, and then a TENS machine which also didn’t have the desired effect.
I’ve trialled every option that was suggested, but none have been my ‘key’. But there is nothing to say that one of these treatments may not be your key, so in my opinion trial them all. That one you reject may just be that miracle cure you’ve been hunting for.
Merl from the Modsupport Team
Adrian,
My AVM was found when I was getting an MRI for my migraines. Have you tried Emgality? It’s a once a month shot that totally got rid of my headaches!
Hey Merl,
I totally understand you. People think that after your operation, you’re done with all pain. WRONG! I have also tried a TENS unit but it didn’t seem to do anything. I received botox shots for a long time but after little help, I stopped them. However, I’ve recently switched pain management doctors and this doctor wants to inject in a LOT more botox than they were using before. Fingers crossed!
I had an AVM removed by craniotomy when I was 16, in 1973. I have taken anti-seizure medication ever since. There is scarring on my brain and anytime there is scarring you can have seizures. Finding the right medication was the hard part, it took awhile. The last seizure I had was in 1985 and it was back to the drawing board. I finally landed on phenobarbital and have been seizure free.This one works well for me-it may not work for you. Hang in there. You most likely will have to take anti seizure medication for the rest of your life. I have become used to it. Good luck.
Hello Jia, my name is Cody. I think I understand that type of head pain you’re talking about, I had my AVM treated with gamma knife surgery which left me with epilepsy, I take anti-seizure meds, and I’ve been good for a few years other than the weird head pain(I think from scarred tissue) every now and then, but anyways I get what you’re talking about and you’re not alone with that.
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Hi, Jia!
I had a craniotomy for a cerebellar AVM many years ago. I experienced a ‘tight’ feeling along the incision line…like the scar was pulling. It made turning my head side to side even more challenging, as if dizziness wasn’t enough! The stiffness certainly bothered me. It took quite a bit of time to ease up on its own.
I would mention this symptom to my doctors. Interesting to see that others have experienced unusual sensations post-op, too.
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No I cant say I have ever heard of this but my headaches are bearable that I can soldier on and dont really need to take anything most times… God bless!
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