Skull & Neck Pain One Year After AVM Removal

For anyone who has had an AVM removed from the occipital lobe area, do you have large or deep indents in your skull in the area where the bone was removed and replaced? From time to time the area aches and hurts when I lay on it. I have had a nerve block, but this is different from that pain. At the same time I find that the right side of my neck where the occipital lobe nerve comes up from the spine is quite stiff and hurts to move also.

Any insights, recommendations or suggestions?

SKD

My AVM was in my parietal and occipital lobe. Yes, I’ve got huge dents in my head. It’s really kind of freaky. I also experience pain sometimes when I lay on it. I’m 2 1/2 years post op. and I wouldn’t expect it to still hurt. I don’t know maybe it’s just always going to be sensitive in that area? I also find that if I mess around with that area, like rub my fingers around it, it hurts. I’ve not experienced the spine stiffness. I know I wasn’t any help, but thought I’d let you know I share some commonalities.

Sharon

cite>Trish said:

My AVM was in my parietal and occipital lobe. Yes, I’ve got huge dents in my head. It’s really kind of freaky. I also experience pain sometimes when I lay on it. I’m 2 1/2 years post op. and I wouldn’t expect it to still hurt. I don’t know maybe it’s just always going to be sensitive in that area? I also find that if I mess around with that area, like rub my fingers around it, it hurts. I’ve not experienced the spine stiffness. I know I wasn’t any help, but thought I’d let you know I share some commonalities.

Thank you Trish … Your reply was helpful.
Sharon

Trish said:

My AVM was in my parietal and occipital lobe. Yes, I’ve got huge dents in my head. It’s really kind of freaky. I also experience pain sometimes when I lay on it. I’m 2 1/2 years post op. and I wouldn’t expect it to still hurt. I don’t know maybe it’s just always going to be sensitive in that area? I also find that if I mess around with that area, like rub my fingers around it, it hurts. I’ve not experienced the spine stiffness. I know I wasn’t any help, but thought I’d let you know I share some commonalities.

Hi …
I had my occipital bone removed and have always felt pain where the bone was…when I get a headache it feels so intense I can feel the pulsing in that area…I’m not sure what the name of the specific area my bleed was other than it was the right lower side and was told it was the vision and balance area. I have seen a chiropractor for over 11 years now, I never realized that the brain stem goes through the occipital bone…I’m told that in laymaens terms that my neck is sinking into my spine, and that my neck muscles are splayed which means spreading out…I get intense migraines and my upper body, mainly neck and shoulders hurt 80% of the time…I am now 57 and have always been a very active strong person.i have had to stop working…I am trying to get SS benefits…My neurologist in Boston has wanted to see me a few times when I have written to him…my surgery was in 1986, sadly I can’t afford it…I don’t know how many other of my problems which are significant mentally and physically from the bleed…I can only take one day at a time and pray…

Hi Sharon, Thanks for posting this, I had an AVM in my right temporal lobe and since it burst on 31st Dec 2013 I've not been able to lie on my right side of my head in bed, I had a Craniotomy for the pressure/bloodclot. And since then its not painful .. its just not comfortable any longer it feels weird and not nice. I now have to lie on my back or left side :( . This annoys me as my wife in bed is to my right and I cant face her without having to roll my head straight upright after like 30 secs :( .I also have dents on my skull which I think is expected after the skull is taken apart and put back together (twice for me now after my AVM removal surgery July) I often wonder if I will ever feel nice to lie on my right hand side of my head again, And If I do roll over in my sleep I wake after a while will a lot of pain :( , Thanks again and I hope you are doing well