What type of follow-up care for treated AVM's?

I was just curious what type of follow-up care your doctors have recommended after it is confirmed your AVM has been treated? I had Gamma Knife in 2004 and it was successfully treated but have heard conflicting things on what type of follow-up to get. My neurosurgeon at 1 hospital said to get an MRI every couple years and my neurologist at another location said I never have to have any kind of follow up again. Just curious. Thanks in advance

I think if you ask 10 neurologists the same question, you’ll get 10 answers. Kind of like any field, different opinions from experts. I had a bleed/AVM surgery in 2004, had a 6mth post surgery CT angiogram to confirm the ‘cure’ of the AVM removal and the surgeon said 'have a good life. Never seem him since. I have seen 3 different neurologists because of on-going migraine/seizure issues post bleed. I would go by the neurosurgeons personally, the again, they saved my life, but always good to get a second opinion for anything important. I do tell everyone that the lessons I learned is that there’s a difference between really good and ‘the best’ for both rehab and for doctors/surgeons and when possible, go to ‘the best’. I recently saw a migraine specialist neurologists and I wished I’d seen her two years ago rather than the great neurologist I see. She does botox for migraines and has me doing physical therapy on my neck/shoulder which the other neuro had discounted as having nothing to do with my migraine probs. In fact two neuros said the neck problems had ‘nothing’ to do with my migraines even though my dog pulling on the leash could trigger my migraines. Lesson learned!

best of luck!

After my crainotomy they still made me have MRI’s every 6 months and its been over 2.5 years. Some doctors say less often some say more often. YAY for your AVM being treated!!!

Thanks for the input. It makes me nervous not getting any follow-up after having a hemorrhage. I was just able to get in with a new neurologist where I live now so I’m excited to see what he has to say. When I complained about migraines and other effects that I know where from the AVM I usually hear “oh it has nothing do to with the hemorrhage/AVM” or the best was “what do you expect? your brain looks like spongebob”! haha. That was the last time I went to that neurologist!

My understanding is GK treatment won’t stop avm headaches, but it can get rid of the avm.

I think you should see Neurology/Headache Specialist, weigh the side affects to any medicine they want to give you. Some times those side effects have you so wiped out, it is like not having a life.
Your avm is gone so you need the headaches treated now. You don’t want anymore CT Scans, MRIs or MRAs than are necessary. These things have side effects too. These are the tools docs use to evaluate the avm.

Peace,
Ameenah

Hi, Kristen.
The first time I had GK we did an MRI 3 months later. Of course, this was only 6 months after the bleed, so probably not unusual. But I would think that 3, 9, 12 months out would be a good thing. Then, at 1 year we did the cerebral angio again. Then MRI’s at 6 month intervals with an angio each year.

It was the angio at 3 years that finally determined that the AVM was not shrinking enough so we decided on a 2nd treatment.

I would think you would want an MRI/MRA or angio to see if the thing is still there or not for a final diagnosis.