I am almost 6 months out from getting my avm removed with a craniotomy. I have some serious headaches all day, everyday. I really don’t remember what it’s like not having one. Medicine hasn’t really been helping and sometimes they get so bad there is nothing I can do.
Is anybody else having extreme headaches? Should I be worried that something is still wrong in there?
Thanks
Thank you so much for letting me know that. Im still trying to figure everything out. It gives me hope 
my 11 year old son had his AVM removed 7 months ago. he is still getting headaches which is normal considering the size of the AVM and the scar on his head. As long as the headaches don’t get worse or cause you to vomit you should be ok
Hello.. Did you suffer from headaches pre-surgery? I did, and they seem to get a little bit worse and just as frequent. My doctor was amazing, but when I look back on it, he didn't answer my question about headaches very well. He said I would get them for the rest of my life. I let it go at that. Not good enough. One thing he did say is to never take Tylenol. For several years before my diagnosis, I took Tylenol to endure the pain. It's associated with liver problems.
So I guess the main question from the limited knowledge that I enabled him to give me,,, is how are your headaches compared to what they were prior to your surgery?
My headaches started before the AVM was discovered none of the doctors say they are associated with the AVM but they continued even after my Radiation treatment May 7 2015 have been on steroids for the swelling yesterday my doctor changed medicine from the steroids to Celebrex. No headache this morning and my balance is actually better I am not 100% but more like 80%. Feels like I might finally be getting back to normal. The headaches are the worse part of this life changing event. Hoping everyone finds relieve so they are not living with constant pain.
Prior to surgery I was getting some relief from Maxalt XLT but after nothing worked not even morphine so I was put on dilaudid and that did help. I think headaches after surgery are pretty common but that doesn't mean you should have to suffer. If the medications you are on aren't helping then you doctor might have to try something different.
Hi, thought I'd respond to this as I too experienced these when I had my craniotomy to resect the AVM 21 years ago. I do remember having moderate to severe headaches for the first year after surgery. From what my surgeon and neuro told me, the brain is still healing from a very traumatic incident, and should fade with time. Mine did, although since my cranium didn't heal correctly, I have pressure pain whenever I put my head against anything, i.e. bed, pillow, couch. I have been told my particular problem doesn't happen often, but I did stop having the bad, all day headaches after that first year. I was also having to change different seizure medications to get my seizures under control, so if you are on any anti-convulsants, check to see if side effects could be headaches. I've been living with this for 21 years, so I have a lot of experience with this and the seizures that can come with this. Good luck, don't know if this helps, but at least you know it isn't unusual and you aren't alone!!!
I have head aches every day had radiation May 7 2015 seeing doctor for another MRI on the 18th hopefully will get answers.
My son started having headaches last month. His eye and forehead hurt him. You can tell by looking at him that he is in severe pain. They are trying to figure out if it is related to the hardware and a nerve. He has a CT scheduled. It’s very concerning and very hard to see him in pain. Has anyone else been told that the headaches might be related to the hardware?