So I've join to try to find out some info from others with AVMS. My husband has had radiation over a year ago to treat his AVM and is now haveing headaches. He has done a couple rounds of steroids and they keep coming back they say its swellling. Has anyone had this happen? And how long did it take to get your swelling to go away?
Hi Beedy. Take a moment to read this profile…http://www.avmsurvivors.org/profile/benmunoz
Ben is the founder of this site and he is now in Med School. You will notice his recovery was not easy either. At the top right hand corner of this page there is a search box…try typing in swelling and see what pops up.
Yes I did. I had my radiation in 2007. My headaches didn't start till 2 years later. My dr. recommended I rest when it happened. Which wasn't easy back then since I was still working. I was tested a few times and there was some swelling. When it turned into a migraine, that's when I would get some rest. Once I couched it for a whole day or two, then I was ready to go again. I've had them last as long as 5 days already. Yea.. I was off work that long (at the time).
I never got a straight as to why it happens. There was some speculation that the brain is adjusting to the healing process from the radiation.
What did you take to help? He's taking pain meds they gave him and it's still constant pain. How long till they stoped for good?
I alternate Tylenol (1,000 mg) and ibuprofen (800 mg). I also use ice packs when they get real bad. One on the back of my neck and another one on my forehead. I don't recommend this but - sometimes aspirin works good for me. Shh.. don't tell your dr. I said that. lol Another trick is to stay away from all caffeine when the headaches come on. At least keep it to a minimal. To much caffeine can increase the pain. Vicodin helps me too but, it puts me to sleep.
I'll tell you something... I'm on dilaudid (a type of morphine) for chronic pain and that doesn't do anything for my headaches. What I mentioned earlier is what helps me the most.
Mine never did stop for good but, I still have two small avms left. Whether that has something to do with it or not - I don't know. I tend to get more of them in the summer, when it's hot outside.
Hi Beedy. I came across your post and thought I'd add a comment. My headaches started about a year before my first big bleed and my diagnosis. I was diagnosed in 2009, had gamma knife in 2010 and a partial embo in 2011. My headaches still occur. I live with one every single day of my life. They're always there and pretty horrible. Most days I just take some tylenol and deal with it. My docs told me that ibuprofin can increase pressure in the head so check into that. At night to relieve the pain and just to sleep I'll take a vicodin or an oxy. sometimes though as soon as my head hits the pillow I'll will myself, despite the pain to just try and get some rest. I wish you the best on the road to recovery. I've been told that even when my avm is hopefully closed off that I'll still maybe have the headaches because the tissue around it is constantly reforming and often it swells and contracts. Something I've been told too is that swelling and headaches increase when it's that time of the month. I wish you the best.
it just don't seam like it's ever going to get better. Are you able to go on wiht everyday life ok? If you dont mind me asking were was yours and how big was it?
If you don't mind me asking where was yours and how big was it?
My brain got swollen about 1 yr after my last treatment i got really bad migraines after treatment…my dr warned me side affects like this would occur and told me how my brain was more than likely to swell about one yr after treatment in which it did in about april of 2011 it caused weakness on my left side I was put on steroids immediately (dexamethisone) not sure if the spellings correct…almost right after I was put on the pills the pain of my migraine was decreasing…I was on the pills for about 3 months they came with many many side affects Iwas taking 16 mgs a day and had to be winged off them very slowly …but it took the swelling away…I wish you and your husband the best of luck.
thanks so much for the info. we was not told about this till it happened. he has also been effected on the left side.
You’re welcome…i hope he heals and things get better and easier for him.