Just wondering if anyone has a strong burning sensation where their brain AVM is located. My doctors think it may be a benign symptom of the AVM stealing blood but it is getting more intense and for longer periods every week. Starting to cause me some concern.
Thanks to anyone who responds,
Leeanne
Leeanne, I am wondering if this can be a simple focal seizure? Look it up and see because I’m sure I’ve read that it can present like that. I will look for it too because I know I’ve read about that symptom somewhere.
Thanks Joy for your input about a focal seizure.That makes sense, I will look up more and so glad that you got an answer today for your son’s irregular heart beat. Keep your chin up about Trent University. Spreading his wings…means you have done a good job as parents…
Joy said:
Leeanne, I am wondering if this can be a simple focal seizure? Look it up and see because I’m sure I’ve read that it can present like that. I will look for it too because I know I’ve read about that symptom somewhere.
Hi Leanne
Since my Craniotomy procedure I have been getting these sensations as well in the past week exactly where my AVM is and where my skull was cut open. I will have to look into this focal seizure thanks Joy, and thanks Leanne for putting the Q up, i was just ignoring and thinkin it was just an after effect
I am going to mention this to my husband…since his AVM removal he has complaints of a weird burning sensation over where the craniotomy was done and chaulks it up to healing…maybe. there is so much worry when he complains of things associated with his head. I know the avm is now gone, but why is he still having so many headaches, sensations, pain in the incision area, sometimes appearance of swelling along the area. from reading the forums, it seems as though these are things which are going to be with him the rest of his life? I really hope this is not true:(
Dipen said:
Hi Leanne
Since my Craniotomy procedure I have been getting these sensations as well in the past week exactly where my AVM is and where my skull was cut open. I will have to look into this focal seizure thanks Joy, and thanks Leanne for putting the Q up, i was just ignoring and thinkin it was just an after effect
Hey Kathy and Dipen,
Thank you for responding. It makes me speculate that this might be related to brain swelling and/or focal seizures. Definitely more reassuring to me that it is a symptom of brain activity versus a sign that a bleed is imminent, the fact that you are getting experiencing it after the AVM removal. Hope it is not too painful for your hubby and for you Dipen.
Thanks for responding. Best wishes, Leeanne
Kathy said:
I am going to mention this to my husband…since his AVM removal he has complaints of a weird burning sensation over where the craniotomy was done and chaulks it up to healing…maybe. there is so much worry when he complains of things associated with his head. I know the avm is now gone, but why is he still having so many headaches, sensations, pain in the incision area, sometimes appearance of swelling along the area. from reading the forums, it seems as though these are things which are going to be with him the rest of his life? I really hope this is not true:(
Dipen said:Hi Leanne
Since my Craniotomy procedure I have been getting these sensations as well in the past week exactly where my AVM is and where my skull was cut open. I will have to look into this focal seizure thanks Joy, and thanks Leanne for putting the Q up, i was just ignoring and thinkin it was just an after effect
I get a kind of sharp tingling pain that could be described as a burning directly over my AVM site, it does not last long, but I think it is the same as you are experiencing. The focal seizure explanation sounds interesting I will have to research that.
Hey John,
My burning sensation is getting more intense and for much longer periods of time now. A couple of years ago, it just hurt a little for a few minutes. Now it is for up to or over an hour, several times a day…
Do your hands or feet go numb too?
Leeanne
John Scragg said:
I get a kind of sharp tingling pain that could be described as a burning directly over my AVM site, it does not last long, but I think it is the same as you are experiencing. The focal seizure explanation sounds interesting I will have to research that.
Leeanne
yep usually my left leg and foot get a pins and needles kind of numbness. And some times the ends of my fingers on my left hand. My AVM is in the right front temporal lobe, so it makes sense that it is messing with my left side. Today it feels like someone implanted wiggly worms under my scalp. Its driving me nuts.
Hi John and Leanne, regarding your hands and legs going numb this is due to poor blood circulation. if you read my blogs regarding the major bleed I had and also in the forums my discussion regarding chinese alternative medicine and accupuncture. You may find this helpful
Thanks Dipen
John Scragg said:
Leeanne
yep usually my left leg and foot get a pins and needles kind of numbness. And some times the ends of my fingers on my left hand. My AVM is in the right front temporal lobe, so it makes sense that it is messing with my left side. Today it feels like someone implanted wiggly worms under my scalp. Its driving me nuts.
Hi Dipen,
I just read your blog about chinese herbs and accupuncture. I like alternative medicine very much. I have been considering going to a doctor that does reflexology, homeopathy, chinese accupuncture etc.
The guy is a guru in Toronto. I think I will check him out as what you said and your experience makes it enticing, certainly worth a look.
Thanks for your help and lots of warm wishes your way
Leeanne
Dipen said:
Hi Leanne
Since my Craniotomy procedure I have been getting these sensations as well in the past week exactly where my AVM is and where my skull was cut open. I will have to look into this focal seizure thanks Joy, and thanks Leanne for putting the Q up, i was just ignoring and thinkin it was just an after effect
Yikes! Amber that sounds like quite a feeling…worms tunneling. We just dealt with my puppy (the one in the picture of me) getting a flying parasite called cutereba into his eye that then burrowed down inside his body to his abdomen and then worms hatched inside of him and were poking out of his skin near his tummy and another site on his chest…lke that horrible movie Alien with Signourey Weaver… Perhaps you are too young to remember that awful movie.
Anyhow, thanks for responding. The more people that say they experience similar offers some reassurance. One of my neuro surgeons looks at me like I am an idiot when I ask his opinion about the burning sensation.
Thinking of you and those worms…
Take care ,
Leeanne
Amber Kassler said:
I get a tingling/burning feeling in the spot where my AVM is sometimes. Feels like a worm is crawling around and making tunnels in there. Gross I know, but the only way I can explain it. But then it goes away after a while.
I just had that for 2 days straight, I put my wifes hand on my head and she could feel the squirming .
so do you think that is electrical activity produced by a focal seizure or blood flow issues, pulsating turbulently? Or something else that we haven’t thought yet?
John Scragg said:
I just had that for 2 days straight, I put my wifes hand on my head and she could feel the squirming .
Hi Leeanne, I get burning feelings in my head and it sometimes it feels frozen.
I know you can get these feelings when you have had a stroke and I have had two.
I was told that my avm has probably damaged the nerves that is why I’m getting these burning/frozen
sensations. I only get the feeling on the right. My second stroke caused numbness on my right side.
I’m going to look into what Joy is saying.(focal seizures)
Peace,
Ameenah
Hey Ameenah,
I have been thinking about you. Wondering how you are feeling since your gamma in the summer.
I think your answer about nerve damage makes sense too… I have always wondered if it was inflamation of the nerve endings as it sort of reminds me of road burn inside your head. If you know what I mean.
Hope you are feeling well,
Leeanne
Ameenah said:
Hi Leeanne, I get burning feelings in my head and it sometimes it feels frozen.
I know you can get these feelings when you have had a stroke and I have had two.
I was told that my avm has probably damaged the nerves that is why I’m getting these burning/frozen
sensations. I only get the feeling on the right. My second stroke caused numbness on my right side.
I’m going to look into what Joy is saying.(focal seizures)
Peace,
Ameenah
Hi Leeanne, I’m doing pretty good since GK, I hope to get better and better 
To me it feels like nerves randomly firing causing the scalp muscles to jump and twitch, my family doctor also came up with this explaination.
Leeanne Newby said:
so do you think that is electrical activity produced by a focal seizure or blood flow issues, pulsating turbulently? Or something else that we haven’t thought yet?
John Scragg said:I just had that for 2 days straight, I put my wifes hand on my head and she could feel the squirming .
Hi.
well i used to have the same sensation around my head and face…I ask well my first doctor, he said that I was having a small seizure… I was also concerned too… but I do feel less sensation around my head (avm) area…So thats a focal seizure… Good to know because I was getting paranoic and ignoring. THank god, that I found this page. (By the way I had the craniotomy done 0n 04-11-08, It seems that veins are reforming again where the las one was…Im waiting for next procedure wich can be radiation
11-25-08.
I’m having this burning sensation in the back of my brain today, I hope it’s nothing to worry about!! Anybody else have this? Is this a focal seizure? Aneurysm?