Tightness and cramping in head post craniotomy

[rose2]

Hello everyone, I am new to the site! I had a ruptured AVM 3 months ago in March 2021. Very luckily, had a successful operation to remove the blood clot and the AVM, which was in my right frontal lobe. So far, seem to have had no significant problems at all - no deficits in movement, speech or cognition (only the ones I went in with, as a friend recently said!). All thanks to amazing surgeons at Charing Cross hospital in London!

Since the operation, my head has healed up well - I have a huge scar across the crown of my head - almost ear to ear. But I have a horrible tight feeling and pulling sensation across my scalp virtually all the time. It’s worst in my right temple when I smile, but there are many times in the day when I have what I think of as a kind of ‘cramp’ across the whole scalp, as if a vice is clamping down on my head. I realise from reading all your stories on this site that 3 months post-op is still very early days - and, yes, this is what the surgeons says too - but I would be keen to hear of anyone else’s experiences of this post-craniotomy…many thanks in advance!

[ModSupport]

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

[rose2]

Thanks so much. It’s useful to hear this so I can at least calibrate my expectations! Am very sorry to hear you still have so much pain…hoping for easier times for you. Guess I will need to develop more patience with this whole process, don’t think these sensations in my head are going away any time soon!

[ModSupport]

@rose2

Guess I will need to develop more patience with this whole process

When you develop that can you please tell me how
That thing called recovery can take a long time… …No, I mean A. L.O.N.G. T.I.M.E.
My expectations were what I call ‘The broken bone theory’. You break your leg, you go to hospital, they plaster it and 6-8weeks later it’s all healed and life goes on. Only this isn’t a broken bone, this is brain matter and neither the pain nor the healing are anything like a broken bone.

I wanted it right and I wanted it right NOW, only it didn’t happen like that and it frustrated the daylights outta me. So much so that I pushed my recovery to make it happen quicker. Bad idea, BAD, bad idea. I convinced myself I was building stamina by pushing, the reality was that I was driving myself into the ground. I pushed myself too hard, too soon, doing myself a greater injury, requiring further neurosurgery. Ahhh, don’t be doing that.

Take the time your body needs, your body will tell you when enough is enough, but only if you listen. The signs maybe subtle, but ignore those subtle signs and they can become more significant, ignore them further and you can do yourself some serious harm. I tried to compare my recovery to others ie’If John can recover quickly, so can I…’ Only I couldn’t. What I have learnt is that we are all different, we all have different surgeries and recoveries, so trying to compare is near on impossible.

Merl from the Modsupport Team

[DickD]

@rose2

In case this helps…

Some years ago, I had a carpal tunnel release surgery. One of the problems with that is the severing of the nerves. The advice given to me regarding my hand was to subject it to “interesting” textures to “teach” it what normal sensations are like. It’s very tempting to keep it wrapped up and away, but I was honestly advised to make sure and stimulate where the scar was, to teach the skin what to expect from normal stimulation. I found a very gentle running with my finger tips or very gentle stimulation with my fingernails was more than enough for it to get used to sensations.

I’m sure there are greater things with a craniotomy but it may be that a little careful stimulation might remove some of the basics.

I think I used to do this to my hand for quite a while post op but I can say that I haven’t felt the need for years by now.

Best wishes,

Richard

[rose2]

Hello Richard, thanks for this very thoughtful idea!

[rose2]

I like the idea of the ‘broken bone’ theory; you’re right, this is the template we often start out with…am trying not to expect day by day progress, but rather month on month. I can see I’ve come a long way in only three months; so am hopeful that another three will make a significant difference.

[Adrian1]

Hi @rose2 and welcome to the family… Just like you my AVM bled and was located in the right frontal lobe area and removed via surgery in 2011… I can say the feeling and pain does get better over time and I guess over the years you tend to get use to it but on really cold days it can cause light headaches but nothing too major… Glad to hear you’re doing fine and believe me as long as the pain is bearable you will forget it in no time… God bless!

[rose2]

Thanks so much Adrian! Reassuring to know…

[Omairi]

Hey there … i think that normal considering how big the scar is … In our situation my son was 6 years old when his surgery was done and until now (( he is 8 )) he have headaches once or twice a week that can be delt with ofc medicines so yeah i think it will be stuck with him and the funny thing that he had his avm the same place you did but the headache comes in any place not just one the spot of it… The doctors says that its a tension headache that might come anywhere in the head.

[rose2]

Thank you Omairi, and am very sorry to hear that your little boy has had to go through this. I have to say I don’t think of the tightness in my head as a headache, at least not the kind of headache that I’m familiar with! I suspect it’s a problem at the level of my scalp and its muscles and nerves that have been cut during the operation. Yes, the scar is enormous, and the top of my head is like craters on the moon, very bumpy and uneven! I also have a fair-sized ridge at the top of my forehead, which I will need to adjust to… but other than that, I’m well, if tired. So, there is much to be thankful for!