Thanks to all for sharing. Seems as if what I'm experiencing is completely normal. That's what I love so much about this forum - you can reaffirm your sanity. :)
Yes, had a craniotomy 3.5 years ago. I live in Maine and when it gets cold I need to wear a hat. If I don't then it feels painful because it feels like the metal is colder than the skull and it really aches. If it gets too col then I will use a heating pad to warm up the metal bits. I swear sometimes I feel every screw!
I made a mistake!
Melissa,
My skull aches, especially when the weather changes. I was lucky they were able to use my skull they cut off to cover the hole, not a metal plate. Like I said before, between the itching and the aching, I do not know what is worse. But I am ALIVE! For that I will be forever thankful. My heart goes out to the family of the NY news person who recently had a ruptured anyurism and she died.
Alice...
I had LPCOM coiled/stented (stents off-label/off-record ) and, I was not taken into open surgery.
Can you share why you had open surgery...and, if coil was left internally (intravascularly?) or removed before clipping?
My initial angio was stopped abruptly and I was placed under coronary care...then back into more "coiling"...it is a long story...yes, I was billed more extensively for the coronary care...
I do have a small tender spot on my skull, when touched, transmits to my upper back tooth area..
Yes, I have attempted to get that properly diagnosed/explained by the initial neuro, to the 2nd and 3rd opinions...
Some members have shared their experiences of having coil stopped, and having the open surgery.
Alice said:
I am also post surgery almost 4 years- SAH- right side coiled- I asked my neuro why my skull was SO indented where they removed and replaced it, and would it ever "fill in?" The answer was NO. But- I have no pain along these indentations- in fact this area is fairly numb.
I had open surgery due to vasospasm (after I was coiled in the right posterior communicating artery) due to tremendous bleeding for several days. I have no clips. I have a shunt just behind my left temple which like you transmits to my upper back tooth area.
patioplans said:
Alice...
I had LPCOM coiled/stented (stents off-label/off-record ) and, I was not taken into open surgery.
Can you share why you had open surgery...and, if coil was left internally (intravascularly?) or removed before clipping?
My initial angio was stopped abruptly and I was placed under coronary care...then back into more "coiling"...it is a long story...yes, I was billed more extensively for the coronary care...
I do have a small tender spot on my skull, when touched, transmits to my upper back tooth area..
Yes, I have attempted to get that properly diagnosed/explained by the initial neuro, to the 2nd and 3rd opinions...
Some members have shared their experiences of having coil stopped, and having the open surgery.
Alice said:I am also post surgery almost 4 years- SAH- right side coiled- I asked my neuro why my skull was SO indented where they removed and replaced it, and would it ever "fill in?" The answer was NO. But- I have no pain along these indentations- in fact this area is fairly numb.
Alice...thanks...amazing...you are the only member who has ever expressed the same sensitivity transmission...There is/are no records of my having any shunt implant...and, no skull surgery was done.
Did your neuros review your angio images with you?
I recently did my 11th anniversary...and, sometime coming up, begin adding some angio images...and, the story portions of when...I have to learn how to do some more things, etc.(e.g. wait for my tech).
Alice said:
I had open surgery due to vasospasm (after I was coiled in the right posterior communicating artery) due to tremendous bleeding for several days. I have no clips. I have a shunt just behind my left temple which like you transmits to my upper back tooth area.
patioplans said:Alice...
I had LPCOM coiled/stented (stents off-label/off-record ) and, I was not taken into open surgery.
Can you share why you had open surgery...and, if coil was left internally (intravascularly?) or removed before clipping?
My initial angio was stopped abruptly and I was placed under coronary care...then back into more "coiling"...it is a long story...yes, I was billed more extensively for the coronary care...
I do have a small tender spot on my skull, when touched, transmits to my upper back tooth area..
Yes, I have attempted to get that properly diagnosed/explained by the initial neuro, to the 2nd and 3rd opinions...
Some members have shared their experiences of having coil stopped, and having the open surgery.
Alice said:I am also post surgery almost 4 years- SAH- right side coiled- I asked my neuro why my skull was SO indented where they removed and replaced it, and would it ever "fill in?" The answer was NO. But- I have no pain along these indentations- in fact this area is fairly numb.
Oh yeah, the weird indentations eventually did go almost nearly away...both of them.
Dents can be repaired with a cranioplasty. The catch? Some insurance companies consider it plastic surgery and many neurosurgeons donât do it. I had a cranioplasty last April and the dent is gone. The insurance company paid because the dent was very visible on the forehead, I had frequent headaches, particularly when lying down, the CT showed bone deterioration, and I found a neurosurgeon (not a plastic surgeon) to do it. Not effortless to set up, and a second recovery. Have a scar instead of the dent, but better strangers think I was in an accident than that my brain is shrinking. headaches are better too.
Hi Melissa- I was all about alternative modalities too. I used acupuncture, chiropractic, homeopathic tinctures (and still do). In this case perhaps I should have paid more attention to what my body was telling me, because since my "blowout" I do not have back or neck pain anymore.
Melissa said:
I'm all about alternative medicine. Thanks.
Mechell said:I have started soaking in liquid magnesium in a foot bath, it seems to help . A great reference book to read to help heal yourself is "The Magnesium Miracle" by Dr. Carolyn Dean
I purchase my magnesium on a site called Health-and-Wisdom.com there is so much information on their sight as well. I find Lavender Essential oil helps too.
I am not affiliated with either of those but I am all about natural healing and finding out about what Drs. do not seem to be able to answer.
I wish you all much luck in healing, it is a long road and even though I have found things to help, I still at times experience many symptoms still to this day 6 years later.
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I remember being quite shocked when I realized that the area near my right eyebrow was actually concave. I was told that it was caused by muscle sectioning that had not recovered post surgery. After the clipping, I was not able to open my mouth wider than to take small bites of soft food. I think that nutrition assistance could have helped avoid some of this "wasting" by prescribing more protein to re-build muscle. Protein drinks, sipped through a straw might be an answer. I even thought that chewing gum might have worked the muscle. Since I was medicated and exhausted for a few weeks, I didn't think of any of these things. Lately, I believe I notice some denting near the opposite eye brow. After 6 1/2 years since the clipping, I don't believe that can be new - maybe just unnoticed. Not a Dead Head, just a Dent Head! Bonny
i am 1 yr post clipping.....i have a very deep dent and getting deeper.....also i noticed on my forhead above my eyebrow if feels as though it is cracking and in middle of forhead....feels like it is pretruding alittle...dr said it was normal really ????? i was concerned cause my first dr. 6 yrs ago i had a coil...and that dr. left practice........then the coil...was coming loose and was bleeding so they had to clip......that dr. i met and he was very young i said ohhhh have you done thease surgeries before he said of course....but he left the practice also ughhhh.........so now i have a different dr. at the practice i just saw....i said are you leaving soon.....lol......he said no.....its a good practice it is at jefferson hosp in phila....but i get very confused and just dont feel right.......oh well i guess this is the new me.......
The bone cement that fills the cracks in the skull after craniotomy doesnât last. They can use a titanium plate, which might last for your lifetime, but when they donât, to make a solid surface, they often need bone substitute. I was 18 years away from my 1995 craniotomy when the bone substitute failed very visibly and looked like I had been hit by a baseball bat on my upper forehead. It happened quickly, maybe over 18 months, and if got to the point it was disfiguring. Insurance doesnât pay for cranioplasty if they see it as cosmetic, but when the cement failed, it took some dura with it, so the ct scan showed it affected function as well as image. During the cranioplasty they had to peel what was left of the old bone cement that had scarred into the dura. They sprayed a product called âdurafoamâ and then covered it with a new bone cement. About skull pain, I have had it for years. I had a right PCA aneurysm and the pain is at the back of the right side. If someone touches that spot, it is quick, pure pain. I sleep on the other side. It doesnât hurt constantly, but any pressure on it can be bad. At this point I think it is a surface nerve that is chronically inflamed. I can live with it by avoiding touching it. I am lucky to still be here, and I bless my two surgeons for that. I hope the new bone cement lasts another 15 years, because the cranioplasty was not an easy recovery. Hope you find relief!
I had a clip in 2010. About 3 months after surgery I had a major indentation at my temple. It was not nice looking and I would have severe pain. I explained to my neurologist that it felt like my skin was sliding down my skull . Nothing helped for the pain. He told me that the muscle had atrophied instead of adhering to the mesh and skull. This could be due to poor blood supply or damage of some sort. They suggested I contact a plastic surgeon to see if he had any suggestions. The recommendation was to do liposuction on my stomach to get enough fat and inject under skin to fill in the spot on my head. There was no guarantee that it would work and may take more than one attempt. I did have to battle insurance a little but because I had pain We were able to get them to see it was not cosmetic. It went well and after almost 7 years I have some indentation but not as bad. Maybe someone else has an idea to approach but this worked decent for me
Iâm 1year and 5months post clipping of 2 aneurysms and still have sensitivity. Iâm now taking Gapipentin which helps. But still cannot sleep on right side due to sensitivity. Also have to wear a hat on windy days. Never leave home without my hat.
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Hi all,
It has been 4 years since my rupture and coiling. I donât have a stent, though perhaps I should.
I wanted to address the scalp pain that some of you experience, because I also had a lot of scalp pain, even prior to the anni rupture in July 2014. At the time of the rupture I was taking 160mg of propranolol daily to control the scalp pain. My blood pressure meds are now more potent and my propranolol had to be reduced to a half-dose to avoid having too low of blood pressure. This has allowed the scalp pain and migraines to become more active again, though they are mostly controlled by the lower dose I now take. Although I have not had a craniotomy, I seem to have fingertip-sized âdentsâ in my scalp that are where the pain can become the most severe. It was at an appointment with my ENT doctor where I learned about taking propranolol to virtually eliminate migraines and scalp pain.
I hope this is helpful to some of you who experience these symptoms of over-active scalp nerves, which I am sure is not a medical term! Talk to your neuro and if that doesnât help, try an ENT doctor.
Best of luck to all in your quest to live a pain-free life.
I actually came on here to ask about this. the ARNP told me before my last angiogram, which was clear, that the shooting pain was from the stent and eventually would go away but after reading so many responses, Iâm not so sure. Best of luck yaâll.
Thanks for pointing this out Kimberly. I am 8 weeks post op today and it has mainly been very hot here in australia since my surgery, but this week we have had autumn weather starting with a few really cool windy days . I noticed the first day that i had a lot more pain and sensitivity particularly at the scar site, but also on the right side of my head. After reading what you wrote, ive been wearing bandana or thicker headband or hat on a windy day which has relieved the pain and applies light pressure.
Great full to have this forum where these tips can really be life changing for us.
Thanks everybody. 
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