I am brand new to this forum, but have been benefiting from it for the past 2 months. Many thanks to all who keep it going!
My 11 year old son is 7 weeks post removal of an occipital AVM. We count ourselves as very lucky since he survived 2 bleeds and the surgery (plus EVD for almost 5 weeks) with only a minimal visual deficit and no shunt. However, he's been having periods lasting 2-3 days of spasmodic headaches which are similar to those he had in the days following the bleed (but nothing like the bleed itself). They are not migraines, since they come and go in waves, sometimes lasting just seconds, or maybe 2-3 minutes.
When they go, he can be totally fine for a week or two. The worst of them was just yesterday, and accompanied by nausea for the first time, so there doesn't seem to be a trend toward improvement as time goes on. Today he seems fine, and is off to school as usual.
What's weird about the headaches is that they seem to be affected by sudden changes in position, by yawning (which I know changes intracranial pressure), and when they're bad like yesterday, by coughing.
It would be very helpful to find out if someone out there has similar symptoms, especially regarding the headache triggers.
My AVM was in my occipital/parietal lobes. I had a major bleed before the surgeries and eventual resection of the AVM. For me, the headaches seemed to be the worst during the first 2 weeks, obviously, but I still got them regularly for months afterward. I also contracted bacterial meningitis, which I'm sure didn't help.
I didn't have the same triggers as your son, it seems. Mine were noise, lights, exercise and some types of weather. I had them every day for the first couple of weeks, then they were more sporadic. Maybe every other day or every 3 days or so.
While I was in the hospital they gave me pretty heavy duty pain killers which worked fairly well. I was released @ 2 months after my surgery and by then the headaches were less frequent. I was told just to take Tylenol, but the 500mg. pills. They worked for me.
I can't recall exactly when I stopped having regular headaches and just went back to having an occasional headache (like most people can get from time to time). I'm fairly certain the headaches lasted for at least 3 or 4 months for me.
Every person is different though, so I would suggest a call to your son's doctor if you are concerned. Mention the triggers, of course.
Also, very glad to hear your son seems to be recovering fairly well, except for the headaches. I do hope he can get some relief from those too!
A few months after my AVM was removed (like 3 months after), I started getting "silent migraines" in cycles that started out short and powerful but then seem to be getting longer as time goes by, but the symptoms decrease in severity with each 'cycle'. It started out that bright lights would cause it, I would get auras (smell burning tires) and then the spots in my vision and then the spots would get bigger and cut out a part of my vision and then I would see the wavy zig-zag C shape that I guess is a marker of a migraine. But then no pain, hence the phrase "silent" migraine. And then I would be shaky and unsure of things and confused for awhile and then it would start all over again in a cycle that seems to me to get shorter in duration with each "cycle".
So now I think maybe I am getting absence seizures where I just stare off into space for a few moments. Or maybe simple focal seizures, but I'm not sure since this is totally all me doing research on the internet, since the neurologists all seem to be very unhelpful and clueless about these things.
Also look into a term called "release phenomena" which as I understand it is the brain discharging things after a trauma like swelling and bleeding and surgery. I hope all of this helps or at least gives you some helpful google searches to do!!
Thank you so much for the replies. It helps a lot to read about the range of people's experiences, post-craniotomy.
We've been in touch with our neurosurgeons, and it is possible they'll do some more scans.
In the meantime, it's hard to know when to worry. :) A couple of weeks ago, we went to the emergency room when he was having these headaches. They gave him an MRI Fiesta, which showed no signs of hydrocephalus (very comforting!).
This weekend, the headaches came back, along with some nausea. We drove Ben to town and actually sat in the hospital parking lot for a few minutes, before deciding to spend the day at the Science & Tech Museum, a few blocks away. :D His symptoms faded away within a few hours...and we were very happy to have spent the day playing with museum exhibits instead of watching cartoons in the ER waiting room!
Seven weeks have gone by, and I just thought I'd post an update.
Ben had a couple more weeks of mild, continuous nausea. He had yet another MRI, and a couple of consultations with his neurosurgeon. Since the MRI showed no sign of CSF pressure, the neurosurgeon's best guess is that the nausea had something to do with small changes in the blood flow around the site where the AVM was removed.
In any case, both the nausea and the headaches seem to have faded away, and Ben got on with exams and schoolwork. He graduated out of elementary school yesterday; and this kid, who missed two months of the school year and had major surgery in a very eloquent part of his brain...took the class prize for academic achievement! Considering that we'd been warned that his operation might leave him with significant impairments (including possible difficulties with reading and writing) this is quite wonderful. :)
So happy to hear of your son’s good news & achievements. Way to go, Ben - YAY!!!