Brain Aneurysm Support Community

Weird headache

I wonder if this is a problem… do I need to worry about it?!? I had a brain aneurysm stroke 3 years ago and in addition to having a coil in my brain I also have a drilled hole and a shunt in my brain that drains the unneeded liquid from the brain. I have been getting the strangest headaches. Not anywhere near the pipeline but on the outside of my head … my head often feels sore just to touch the scalp. To brush my hair hurts. The skin on a part of my head feels like it is bruised. Then the next day it’s fine… not sore at all. Then a few days later we go through the whole song and dance again…

Mine was about 10 months ago. I have a headache every day in one of 3 places. I have never had migraines but they feel like what I think migraines would feel like. The doctor agrees but doesn’t want me to take anything for it. Okey dokey. About a month ago my head started itching and my scalp area from the crown of my head to almost my forehead is tender. They cut my hair and when I got home I got a pixie cut so I just run my fingers through it in the morning so no brushing. I don’t think I could stand it. I thought it might be my shampoo or conditioner, changed them several times and that wasn’t it. I came out of ICU with a BiPap machine so I thought it could be the mask straps being so tight and pulling on my scalp but, like you, it’s not every day.

I go back to the doctor next month and will check with them and see if they have any ideas I haven’t thought of. Sorry you are experiencing this but glad to know it’s not just my imagination.

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Hey Sandra,
I had a craniotomy and have a shunt ‘installed’ too. Weird headaches are my new normal (if you could EVER call them ‘normal’). I have some weird scalp sensations also. Initially the medicos all said it was ‘healing pain’. But even years later, long after the healing stage, I’m still getting weird pains. The scalp pains I experience are primarily over the steel plates holding my skull back together. But these are what I’d rather explain as skin pain and external, not a neurological pain or a headache pain which for me is much deeper.
But, in saying that, I have had a few issues with the shunts. I’ve had the tubing fracture, a distal tube blockage, issues with the valve etc, etc. In one of the incidences I had the fluid collect between the scalp and the skull which gave me the sensation of something like a bruise, but it wasn’t a bruise. It was tender but more from fluid movement beneath the scalp than pain like a bruise. When I told my Dr he looked at me like ‘WTF’, but at my insistence sent me for a scan and sure enough, there was an issue. They could see the fluid on the scan.
Personally, I’d be requesting a scan. What’s the worst they can say? “We can’t find anything”. But then if they do find an issue, it can be managed and dealt with.

Merl from the Moderator Support Team

Thank you both for good responses. I spent last night surfing the internet and I finally found something that might apply to us … it said something like Scalp dysesthesia and the article was written by Jennier Huizen…look it up and tell me what you think. I got off the phone with a nurse practitioner who says I need to see a dermatologist but I think that is completely not correct. If I continue to get this any worse I will definitely ask for that brain scan thing,…

Artist, please be very cautious when using Dr Google. I’d take Merl’s advice and ask for a scan, this way you can get physical reasons out of the way.

My subarachnoid hemorrhage was 7 years ago this month. I had coiling and a shunt. Like you I have headaches, but I do have a long migraine history too. My scalp is so sensitive, and migraines are more frequest since hemorrhage than they were before. I keep getting MRIs and MRAs and nerologist most recently said I’m in clear, despite a family pattern of aneurysms. But I seem to need migraine preventive meds, just have not found find right one. Besides headaches I have short term memory loss and have deficits on executive skills since this began so long ago. I’m much worse when anxious, stressed or fatigued, so sometimes progress looks weak from inside when head hurts and can’t recall. I’ve learned that there are so many who do not have patience or even empathy or compassion, maybe from world moving so fast for so many. I’ve lost family and friends for their lack of empathy. It does certainly change one’s life and view of self/others.

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I get those aches where the titanium plates are, too. I call them “titanium headaches.” It was 3 years last weekend since my craniotomy (clipped aneurysm before it ruptured), and I remember feeling the cold air thru the cracks of where they took the bone flap out. Felt so strange! Every once in a while I’ll get them again. So, you’re not alone dealing with them. Like you said, it’s a new “normal.” I have migraines and Meniere’s disease, along with a history of TBI and several concussions, unfortunately.
Have you tried getting prism glasses to help with the vision differences? They really helped me after my brain surgery. One quote I remember “If you’re going through hell, keep going! You’ll get thru this.” And my personal favorite is “Be Brave!”

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Such a comment that ties in with my issues! Yes I have just recently got new prism spectacles to help me get my eyes in focus… hope it makes a big difference. In fact I just recently read avstory of a bunch of pages for the first tine in over 3 years. It was exciting just to be able to read again like old days!
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Hey Sandra,
The response you received from the nurse practitioner is common. It comes across as a bit of ‘…well, it’s nothing we have done…’ so they refer us onto every other specialization it could be. I’ve seen neurologist, physiologists, ophthamologists, psychologists, radiologists and damn near every other ‘…gist’ known to man. Often when these ‘other specializations’ have no answers it all ends up being a psych diagnosis. So the line ‘…well, it’s nothing we have done…’ ends up as ‘…well, it’s nothing we have done… …so it must be YOU.’
BUT
Here’s a little bit of information, follow through with their advice. Go and see a dermatologist (and anyone else they recommend), see what they say. If the dr/nurse give you a suggestion and you don’t follow through they can use this against you ie 'Patient Not Following Medical Advice". And once such a note is listed in a medical file it can follow you EVERYWHERE. I know this because I am listed as a ‘Non-compliant Patient’ because I question the dr’s and they don’t like that. In their view I supposed to simply go ‘Yes Sir’ ‘No sir’ and accept it all, but due to all of the “Fun and Games” I’ve had on this journey my ‘Yes Sir’ ‘No sir’ has turned into 'What, Why, When…". I ask questions, I investigate then I ask even more questions. If someone has suggested a treatment, I’ve given it a go. I tried all sorts of medications and treatments (even unconventional methods/treatments). I have everything documented, so it can’t be said that it’s anecdotal or hearsay and then when they ask I can prove that I’ve crossed every ‘t’ and dotted every ‘i’. Once they see that I have exhausted ‘their’ treatment options they couldn’t say I haven’t tried treatment ‘X’, because I tried them all.

Merl from the Moderator Support Team

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Hi…your symptoms sound much like mine. Two years post surgery (coiling and craniotomy) I had a weird sensation where the bone flap was. When I felt the area, the whole “landscape” had changed. I went to my cerebral vascular surgeon to have them check it out. Following a ct scan, my surgeon told me the bone flap had “resorbed” into my body…basically it disintegrated. I asked if this was normal. He said “well, it’s not abnormal but it is uncommon…happening in about 1 out of 500 cases”. Without the bone flap, a corner of the plate, was pushing into my scalp…this caused so much pain, not at that site, but everywhere else on my scalp… The pulling sensation was so painful and uncomfortable. Fortunately, Tylenol knocked down the pain. This sensation lasted about two months, until I reached a new “normal”. But without the bone flap, there is a dime sized soft spot. Without touching the area, I can feel the pulsing…it was a bit unnerving until I adjusted to it.
It would be worth asking for a ct scan for peace of mind.
I see you live in Minneapolis. So do I…if you ever want to talk, please let me know.
Cindy

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Hi Cindy
I would like to meet you and compare notes… but not right now as I am only coming back to Minneapolis when it warms up! I am constantly cold and have just decided that I can do it any more. Can I reach out to you in May or do?

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Well, we’ve had a pretty mild winter so far! I do find talking about what happened to me is good therapy, especially if it gets someone to visit a doctor if they’ve been having symptoms consistent with a brain aneurysm. Where did you have your surgery? Surgeon?
Cindy

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I am a rupture aneurysm and AVM survivor (twice). Emergent Crani #1 then 2 weeks later #2. I am also an registered nurse in the operating room which is where i was when the first aneurysm ruptured. I would encourage ANYONE who is considering ANY type of implant in the brain to consider all the ‘what if’s’ associated with an implant in your brain. There are so so many things that can go wrong, from revisions due to the device malfunctioning, infection, migration, vendor recalls etc. Please think long and hard before doing this. any device that is placed in your body puts you at risk for so many things it scares me. I have been an OR nurse, educator and director for 35 years. I refused a vena cava filter when I was just out of ICU the first time. I am fortunate that I did that as the filters were recalled a couple years ago and have a risk of death associated with them. Please write if you EVER need addl info. Unfortunately I know more than I wish I did about this. Not always a blessing to have this knowledge and understanding. Tigs Mum

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Cindy I was so out off it at the time I don’t recall any of these Doctors. I was at Abbott. I had the initial surgery by Dr Dr Kayan or Dr Delgado. I think they put the coil in my head. I don’t know which. Then a Dr Mullen did the ‘sump pump’ I believe. I highly value what they did for me but my brain is so fried I can’t remember details! Names of people are totally lost to me… so weird.
Anyways I normally live in Bloomington so will reach out to you when I get back into town…:wink:

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