Sometimes I get a very sore scalp and it hurts to even touch it lightly. I am 10 yrs post a clipping for an SAH anyone have This?
yes, I have had this periodically and I’m now 20 years out. Just sometimes, not all the time. I have mentioned it to my neurologist, who doesn’t seem concerned. The very top of my head is exquisitely painful if touched, or when I wash my hair, when the pain is there. My second brain surgery seemed to make it less often painful, but not entirely gone. My theory (never corroborated by a doctor) is that cut muscles, nerves and bones never entirely are the same. its kind of like arthritis in a broken bone. Do you notice a change when the weather changes? Mine is worse in cold weather. Do you feel the need to take a painkiller?
I do feel need for pain killers but do not want to start going down that road I don’t want to beck dependent on them…have u tried any non narcotics that work for the pain
When did you last see your neurosurgeon/team? When did you have a f/u angio or MRI/A or CT/A?
Normal MRA last week–your theory makes sense it’s the same thing u think but I wonder why no docs explain it that way
I haven’t tried Tylenol or Advil, because I can avoid the pain by not touching the top of my head or by moving the top of my head beyond the pillow. I saw a neurosurgeon 18 months ago for the second neurosurgery and he shrugged when I told him about it, like 'what do you expect after your skull was broken?" I’ve had a series of follow ups over the years, with no concerns about the aneurysm reforming or the scalp pain, just concern about the dura, the skull bone deterioration, and scarring of the surface of the brain. I have asked what that means and they haven’t had an answer beyond, ‘it’s not what we would want to see’ The pain is in a different area than the area of scarring that they saw. If you get an answer, please share!
So I’m wondering what the consequences are if it is in fact the dura , skill bone deterioration , and scarring of the surface
Of the brain? Of course I’m wondering if that’s what is happening to me and if so, than what?
I highly recommend on our Blogs to find the Kennedy Kirsch (sp?) blog on her youtube...She's a 17 y/o who recently had the open surgery...
Also, I know a few others who had treatment very to quite young who have done beautifully over decades...One worked across the hall from me who none of us knew had had open surgery...until after I was disabled from the new minimally invasive procedure.
Wishing you best...in research and in getting answers from your docs...
Momof2, they haven’t told me about the consequences of scarring beyond that they wish it wasn’t there. But I don’t think our pain in the scalp reflects anything in the brain, just the damaged nerves of muscles and bone that were cut during surgery. My brain scarring is not near my scalp pain, which is at the top of my head. The scarring is between my right eye and my right ear, where I have no surface pain. My point was the that surgeon considered the scalp pain of no importance, given what else he was seeing. The pain in one area and the scarring in another area aren’t related as far as I know. I think the issues of long term survivors of aneurysms are relatively new to medicine (since so few used to survive), so they are learning along with us. All we can do is mention it every time we see them, and hopefully they will find a reason, and a solution.
Sad to hear its been so many years and still going on.
I am almost 4 years post craniotomy.
My scalp itches in that area only, is very sore in the scalp area from one ear to the other,, mostly on the ani area.
Also, my skull still hurts. I have hit it hard a few times and saw "stars". Just clumsy in my movements due to neuro inbalances, but have also hit it with the hairbrush and that also hurts.
I think it is something either that we have to learn to live with or no one knows (doctors) as to why.
Also, a lot of hair loss & hair very dull now, no shine.
On a positive note, we are alive. I only wish my ani was never found (by accident during mri) Yuk! Maybe or maybe not I would still be here more "normal".
Hope you feel better soon.
I have also complained about the tightness on my scalp and my regular Doctor explained to me after she read the entire report of how they cut open my scalp removed a chuck of my skull to get to the two annies one had ruptured they put on clips on both of them and then they had to close up my skull with some device where they had to take a chuck of skull, they had to close my scalp quickly, that is why the tightness. I take Tylenol 3 when it is really hurts but not often. I find that when I am at work (high stress position with the federal government) it hurts more towards the end of the day. Also I think what someone said about the change in weather also plays a factor. My doctor also told me that she believes I suffer from PTSD and she is right. When it happened to me as well as I know all of you who had a rupture it is something you wouldn't wish on anyone. She said most people have no idea what we went though.
In regards to tender painful scalp, I have read many of the posts here and I am not surprised at what I’ve read. The responses from the Doctor’s concerning our complaints to our pain in my opinion are not very compassionate. I’ve had my neuro doctor say to me, “What do you expect, you’ve had brain surgery.” But that is not exactly what we want to here when we’re in pain. The pain mentioned here, I too have suffered with. More so when it’s been rainy and in the winter. I’ve treated my pain like arthritis. Like any womb, I figured that when it got cold, to always, always protect my head from the elements of the weather. I always made sure to keep a scarf handy at all times. On windy days, I seemed to have issues as well. Arthritis is the cause due to the severity of our surgery and the impact it had on our nervous system and our body. Cover up in inclement weather and I assure you, you will see a difference! Hope this helps!!
I know this forum thread is from a couple YEARS back, but I’m new to this and I googled this exact thing and this came up!
@momof21 I have a tender/painful area on my scalp also! I’m 3-4 months post craniotomy for an Unruptured Aneurysm. My scar is near the front of my head, on the right side but the pain is on the top/back of my head on the right side, kind of where my head curves.
The pain isn’t debilitating or severe, it’s more annoying and consistent. The best way I can describe it is the same kind of pain as when you take down a realllllly tight pony tail after a long day, except it’s kind of always there. (And I rarely wear my hair in a ponytail)
@Sigmund I have the same theory!! I figure it’s the repercussions from cutting into muscles and/or nerves up front that may have been connected to the back. I’m still hopeful that it’ll get better. It does feel somewhat better after I chew gum for a while! (My neurosurgeon suggest I chew gum to strengthen my jaw… I saw someone mention Kennedy Kirsch up there in the forum, if you’ve seen her video, I had practically the EXACT experience and procedure except I was 25 not 19 at the time)
I do have a follow up with my neurosurgeon in a few weeks, and I’ll definitely be bringing this up. It’ll be my first follow up where pain, and pain killers and opening scars aren’t the focus of the appointment, so I hope we’ll have more time for the small details.
I’m glad this isn’t just my head reacting in some weird way! I’m so glad it’s not just me! I mean I’m sorry you guys are hurting too! But it does calm me down a little knowing it’s not just me.
wow wow wow, i am so glad i found this site, u just do not no how relieved i am to read the exact same symptoms i am expierencing. [ sorry for the misspelling] i like how you discribed the pony tail thing. i cant even use a brush, YAWN, TOUCH, EVEN WASHING MY HAIR hurts in a tingling way.its been 8 years since i had my brain aneurysm and im just now expierencing that feeling on the top of my head. it sometimes hurt when i chew my food. IT SUCKS. i started to freek out 3 days ago when it started. i thought maybe something tooo do with the screws was going wrong. i am so much better now that i got to read and learn of others that had suffered a such horible expierence in life. i ask god to bless us all.the dr that i have now is a practitioner he dont know how to answer these ?s or know of anything about aneurysms so he refered me to a nero. of course thats 30 min away from were i live. and 4 hours is Jewish Barnes Hospital in St.Louis were i had the surgery done.
In regards to scalp pain I suffer from it in a daily basis. My crani was across my head 15 yrs ago & the tumor regrew last year. Had Gamma Knife than.
Than this year I found out I had a Annie unruptutred which they worked on which now increased my pain.
But on my scalp I feel like I’m growing a horn it actually is feels like one & very sensitive anyone else ?
There are no pain receptors in the brain so the pain is not “in” the brain, the pain has to be via the scalps/skin/muscles nerves that were cut during surgery.
I have no experience with cuts to the head but when I had my shoulder reconstructed I was told to massage the cut in a circular motion all the way along it using two fingers. Not heavy pressure but enough pressure to move the skin, this apparently was to break up scar tissue and encourage nerve regrowth.
Did it help? I guess so. I have a nice, flat, barely visible scar and no nerve pain in the area of the incision. It’s probably too late to help with scars for most of you but maybe the circular massage will help with the nerve healing? Nerves can take decades to heal and reconnect and reroute after damage.