AVM Survivors Network

My son's odd headaches


My son is 10 and had his avm rupture when he was 6. Fortunately we were able to catch it and he had a craniotomy and later gamma knife. He’s doing well and I thank God every day for his life.
He has random symptoms and I’m not sure who to go to, or what type of dr. His neurosurgeon follows up every year with an MRI and in a few months we will do an angiogram. He’s not worried about my son’s symptoms but I’d like to help him cope.
He has tremendous anxiety which I’m helping him through with therapy. But he gets really odd headaches that he says feel like there’s bleeding inside his head. That’s his 10 year old description. They come and go quickly. He also struggles in school. He tests well but has trouble focusing and with memory and language. He’s also tired a lot and does have some weakness on his left side.
I treat him like a normal kid. He generally is. Does better when he sleeps well and eats well but is super cranky.
I want to find a doctor I can consult with regularly to just understand what’s going on with my son so I can help him and explain why he might have certain symptoms. Anyone have someone they work with in the NYC area?


You sound like a terrific mom, Rosemary. I would recommend a neuropsych if you can get to one; if you can't, then a good neurologist with a lot of experience with brain injury. If you don't get NYC recommendations here, post also on the Northeast group to see if you can pick up some recommendations there. All the best to your son -- what a sweetie. So much for a 10 year old to cope with. Anxiety is tiring and can aggravate symptoms, so working on the anxiety is a great idea.


Thank you. We have been to several doctors but I think, after reading some comments here, they don't really know what it feels like to have brain surgery. It seems all of the adult survivors say they struggle with headaches and depression.


Rosemary, unfortunately all of the symptoms you describe are very common following a bleed and treatment. A good neurologist is an excellent place to start and like dancermom suggested, if you can find a neuropsychiatrist that would be very helpful. If you son is experiencing new or different symptoms it may be an indication that there is something else going on, like seizure activity. I can't imagine trying to cope with all of this as a child. It's hard wough for us adults! I wish him and you the best of luck.


Thanks very much. I feel so bad for him but as long as it is normal I am not worried. His dr thinks it is


Thanks very much. It is heartbreaking to not be able to help him. Did any techniques help you cope?


All I can say from my own experience with radio surgery for avm is that, yes it was the cure, but I was never 100 percent after. I’ve always felt like my brain is not as sturdy as before. . If that makes sense. I still get headaches and other neurological issues. I also feel as if I get mentally tired quick. I’ve developed a lot of anxiety, and depression. You probably have to keep in mind that this kind of injury is ongoing and focus on the positives and accept that he may always have a few struggles. Im glad he has a great mom! Oh and yes keep on the doctors, I know it gets tough but you know. I’ve made the mistake of letting up and they probably think you’re happy where you are. Seizure meds can have adverse effects if you don’t have the right combination. Have they ruled out radio necrosis?


WOW!!! I feel like this a lot of the times also and have pointed this out to my neuro and Doctor many many times but its always dismissed and the headaches do feel like a bleed but i can say i stay strong by thinking that its fine and I have been treated...I get dizzy spells at times where I feel like i am going to collapse BUT i will say everything IMO is caused by the stress and trauma we have gone through with having a bleed and then surgery for removal...keep us posted and God bless because you are right everyday little man is alive is a great day!


I did ask about necrosis but I have not gotten a clear answer on that. He will have an angiogram this spring to make sure the gamma knife really worked. If he is going to have headaches or any ailments, I just want to understand what they are about and what to expect and how to help him. Poor little guy is so stressed out and I treat him with lots of love and comfort and people think I am babying him. But I am his mom and I want him to be happy. In the meantime, I do want him to also know what to expect and to find ways to help soothe himself. He is very worried all the time and has trouble sleeping. He's developed a need to stretch and crack his knuckles all the time and it's hard for him to lie still. On the flip side, he is hysterically funny, a total ham, an amazingly talented artist and a great person. Do the headaches eventually subside? Also, I am not going to medicate him. He is 10 and I don't prefer that solution. I would like a holistic approach. Thank you!


I agree with you! I think my son has these ailments because of the trauma he went through. He developed this need to crack his knuckles and stretch his joints all the time. It has to be due to anxiety because he has had every other test in the book and nothing is coming up.
How often do you have headaches and have they subsided over time? I just want to help him understand and cope. He worries so much and is such a great kid, it breaks my heart. He is too young to have this kind of stress! But again, every day I thank God he is alive and doing well. Thanks for your reply


Also, what if it is necrosis? Can that be fatal? What do they do to treat it?


Here it is. The radio necrosis is basically area where the avm was or right around it, that when treated was either injured or killed by the radiation itself. I guess it takes a bit of time to develop. It happened to me because I had radio surgery twice, separated by 2 years. It basically caused problems that were very similar to the symptoms of the avm. It can be treated in several ways. Hyperbaric oxygen, steroids, other meds that decrease the edema like Trental. So I was treated some 8 years ago with some success. For awhile things were so so. Then symptoms become much worse again lately (past few years) so I’ve returned to specialist recently and started to get specific treatment again for radio necrosis. I’m noticing that things are improving. So let’s hope things work out ! Now I’m sure others have dealt with this. It would show up on mri.


The stress of an ordeal with ones health will get to anyone. I’m not sure where I stand on medication for someone that young. . But anyhow. Art is a great outlet.i became involved in music.


Has anyone tried acupuncture?


When your son get's these headaches is it behind one of his eyes?


Not necessarily


I have with mixed results. 90% of the time I felt a little better, the other %10
I felt like me again. I felt whole.


I have suffered from headaches now for quite some time and my operation was in early 2011. I think with stress it makes it even worse and I have noticed increased pressures at work in the last year have increased them and made them worse...Its a long road to recovery but God will guide him through this and his life will never be the same in a good way...God bless!


I generally get the headaches in my temple areas and where my AVM was located...keep in mind that I was advised that as the scalp grows and nerves grow after surgery the pulling of the skin and skull cause tension and headaches...so thats why i try to ignore them as much as possible...God bless!


I would deffiently be alarmed by that, if he thinks something is happening it could be--he would know his body better than anyone...never be to careful...headaches are a symptom & so are nose bleeds..I would look into it getting a good neosugeon..get second opions whatever it takes.