Post-op pain from where they put the halo screws in for brain surgery

so since my surgery i've had this pea sized bump on my fourhead that my doctors are guessing it's from one of the halo screws and that it's not healing properly and giving me problems. i can't get anyone to help me with it other than just talk about it. it's very painful and it gets worse when i'm upset and in more pain.

is anyone else having this issue? it's like the calcium that trying to grow into the hole where the screw was keeps popping out.

thanks for any help

marcii

Marcii, I did a review of both this community and the AVM community about post-halo pain, and was not able to find anyone else reporting this kind of pain months after surgery. It doesn't mean there aren't a few others, just that this kind of pain isn't typical post-op. Possibly there is some local nerve damage? Are there any signs of infection?

Marcii ...

Was the screw removed over time?

Can you share/explain a halo screw?

I do not know that part of the open surgery status...i.e. when a screw may be removed?

Were you told it was calcium...in the healing process?

A number of us do not know open surgery ... even when I read the two books on the BAF main site...by a Dr. Eric Nussbaum and one by Dr. Robert Spetzler...(and, yes, I may have read it and my memory has failed in its usual manner...after the minimally invasive coiling...and off-label/off-record stent implants)...

Prayers you get lots of feedback...

Pat

Same problem. I call them “my nobies”. I am a year past and I have no pain and they are slowly going away. I pray the same for you.

Marcli
I’m glad you mentioned this, next month it will be a year since my clipping.
I spoke to my surgeon just yesterday and I asked him about a small lump near the burhole, this was or should I say a calcium build up also I asked him about another issue as on the front left side of my forehead I noticed like a small like step on my skull which I have only just noticed, he said to me in a joking manner that it was his fault when he was tidying things up.
Basically it is where he put like a trap door in my skull to put more instruments in whilst clipping the Annie, so he placed like a 2 screws (joining clamp) sometimes this hurts me a little bit however he did tell me that it can be up to 2yrs before things settle down.
For the pain I just take paracetamol.
Hang in there as I’m sure it will settle but if you are in any doubt get in touch with the team who performed the operation
Take care and good luck

I have the same problem. I feel like 4-6 bumps that I asked the dr about. He said it is normal for some people to experience this and that I shouldn’t be worried but that it is the screws from where the skull was reattached. It scares me though cuz they are very prevalent. And sometimes it hurts and I get headaches. I dunno what todo about it either though.

no outside/visual signs of infection or heat in the area. just a BB sized lump that gets bigger when my head hurts and smaller when my pain is less. it's seems as if they're connected, the pain and the lump. but funny thing is, is that there's no scar at all where the halo would have been screwed in during surgery. so i'm at a loss.

i go into see my neurologist AGAIN today. so we'll see what he says. but i finally demanded that my regular doctor address it and she scheduled me for an ultrasound. so hopefully we'll figure it out.

thank you very much andrew.

my best to you as well

Andrew said:

Marcli
I'm glad you mentioned this, next month it will be a year since my clipping.
I spoke to my surgeon just yesterday and I asked him about a small lump near the burhole, this was or should I say a calcium build up also I asked him about another issue as on the front left side of my forehead I noticed like a small like step on my skull which I have only just noticed, he said to me in a joking manner that it was his fault when he was tidying things up.
Basically it is where he put like a trap door in my skull to put more instruments in whilst clipping the Annie, so he placed like a 2 screws (joining clamp) sometimes this hurts me a little bit however he did tell me that it can be up to 2yrs before things settle down.
For the pain I just take paracetamol.
Hang in there as I'm sure it will settle but if you are in any doubt get in touch with the team who performed the operation
Take care and good luck

i was told that when they did my craniotomy that they used a type of halo to basically bolt my scull down so as not to move during brain surgery. so the screws are only in during the surgery.

my best to you,

marcii

■■■■■■■■■■■■■■■■■■■ said:

Marcii ...

Was the screw removed over time?

Can you share/explain a halo screw?

I do not know that part of the open surgery status...i.e. when a screw may be removed?

Were you told it was calcium...in the healing process?

A number of us do not know open surgery ... even when I read the two books on the BAF main site...by a Dr. Eric Nussbaum and one by Dr. Robert Spetzler...(and, yes, I may have read it and my memory has failed in its usual manner...after the minimally invasive coiling...and off-label/off-record stent implants)...

Prayers you get lots of feedback...

Pat

thank you tina, were your bumps from the halo screws or something else? i only have the one little bump on my forehead and it's small like a BB. but whenever my head starts to hurt the bump gets bigger like a pea and hurts real bad.

my best to you,

marcii

Tina said:

Same problem. I call them "my nobies". I am a year past and I have no pain and they are slowly going away. I pray the same for you.

oh wow! i never even thought about that. thank you. i'll bring it up to my doctor.

my best to you!

marcii

Lilnutmeg said:

I have the same problem. I feel like 4-6 bumps that I asked the dr about. He said it is normal for some people to experience this and that I shouldn't be worried but that it is the screws from where the skull was reattached. It scares me though cuz they are very prevalent. And sometimes it hurts and I get headaches. I dunno what todo about it either though.

Hi Marci,

I have the same problem. I can feel the bump where it's at and if I've been thinking too hard throughout the day or are really stressed or even when the weather changes and the barometer drops I will feel discomfort there. I would think you could get a prescription pain med from your doctor if need be but I just take ibuprofen when I need to. I just treat mine like a battle scar...lol

Wish I had a better answer for you.

I should probably mention, it's been 2yrs since my clippings and I unfortunately still get discomfort there.

i saw my neurosurgeon yesterday and i couldn't get any answers about the bump. until i picked up a plastic skull that showed what the surgery looked like. i showed it to him and he's guessing that the bump on my forehead isn't from where they screwed my head down during surgery, but from the screws they used to put the piece of skull back in. now why in the hell didn't my neurologist and two of his assistants and the surgeons assistant know this?!! it took me months of visits and being passed around to get a simple answer. why don't they send us home with info on what to expect? just another reminder that once you're out of their hands they've forgotten about you and you MUST BE YOUR OWN ADVOCATE! i posted pictures of what it looks like.

Hi Marcii,

I don't have a bump per se but I know that when I have headache or stress out, that's when you can feel my scar in my heard cuz it seems to raise up and it hurts a bit. Also, on my left side, I have what I refer to as a ditch. It seems like something was taken and not replaced. It is not over obvious but it doesn't take long to see it if you are standing infront of me. It does hurt a bit when I have bad headache, stress out or something. I hope your neuro takes a look at it and provide you with a proper explanation.

so i finally got my regular doctor to get this bump ultrasound to see what it is. and it's NOT a screw from the anny like the neurologist and neurosurgeon said. imagine that.

it some sort of cyst or tumor that has nothing to do with the anny except it's agitated whenever my head hurts. i'll know more next week.

just a reminder people that we cannot wait or rely on our doctors for everything. we must fight for our own best care and be our own advocate! i fought for months to have this issue looked at and was treated like i was just paranoid.

Good for you, marcii. Self-advocacy is very important. I hope this can be easily dealt with.

Marci - you Rock! Being your own advocate is 90% of the battle. I’m glad your doctor did the ultrasound. Let us know how next week goes!