Was wondering what others have experienced post AVM surgery as far as follow up testing--my surgery was on 5-19-14 and have had 1 CT scan (without contrast) while in ER after a fall 2 weeks post-surgery. What have your experiences been as far as follow up testing??
Can you ask for an angiogram or at least an MRA? Most neurologists who are familiar with AVMs will do one.
I think your scan was because of the fall, not as follow up.
My follow up was an angiogram immediately after the operation. I had some follow ups for complications, but aside from that, it was just to see the doctor, and no other procedures were needed.
Hi Julie, I am so glad to see you followed my suggestion and posted this discussion. I am certain someone will benefit from your posting and hopefully you will too.
1 angiogram 6 months and 18 months after surgery. I discussed the plan with my interventional radiologist and neurosurgeon to come up with the plan.
I left the hospital 5 days after my surgery and I just had my 8 week follow up with my surgeon. I am still dealing with vision problems so a return to work may not happen for a few more months. This will be confirmed by an opthamology appt mid Sept. The exiisting plan is to have an angiogram and mri 6 months post surgery to confirm everything has been taken care of. Until then eat, exercise and enjoy life to the fullest!
Angiogram 1 year after oblierated to confirm stable then thats it. I keep thinking perhaps should have yearly checkups but seems no need suppose you could be putting yourself at risk for no reason apart from some reasurance if continued to have scans.
I had radio therapy for my AVM in 2005. I have been back every year for an MRI for these next 6 years and now I go back every year and a half. Nothing has changed with my AVM, no shrinking, no swelling, just the last visit they stated that blood was starting to flow Bach through the part that ruptured. They didn’t seem to concerned, but I was thinking, if there is a spot with a gaping hole and blood is starting to flow back through there it’s going to flow out the hole. Maybe I’m wrong and everything I learned in school is different now and it will magically just rush by the hole without flowing out. What do I know, I’m not a doctor. But to answer your question, I have been going back every year for an MRI for 6 years and know every year and a half.
My daughter's situation was a little different. We found the AVM without any hemorrhage or seizures. She had Gamma Knife and gets an MRI/MRA every 3 months. They offered to wait till 6 months for her last one but we were eager to see progress and kept it at 3 months. We were told that when the MRI shows that the AVM has obliterated that we will then do an angiogram to really see in greater detail the exact progress.
I had an MRI and was told to have another one in 5 years! I would say in the next two years to expect a couple of MRI's.
After six months, I had a follow-up with the surgeon. After a year, I had a MRI. Now I don't see the surgeon until the two year mark. Doing well so far. I had trouble focusing on tasks for quite a while, but I seem to be getting some of that focus back. So far I have avoided very detail, complex projects for fear of messing them up. But all-in-all, things are going very well. I was blessed that they found my brain AVM before I had a bleed. Still, recovery was a bare in the beginning.
Good luck with your recovery. My doctor was smart to tell me in advance that the recovery would be a long one. Even knowing that I got frustrated a lot at times. However, things continue to improve. I wish the same for you. Hang in there.
Hiya, Mine was removed via Cranio on the 7th July, I had a Angio 2 days later :( , Then on the day of my discharge from hospital to go home 1 week after surgery I was given a CT Scan with contrast Dye. I assume that the docs were all happy with the results that they let me away said still post op brain swelling, but no bleeding and AVM looks to be gone :)
Congratulations on continued recovery. I'm curious as to what type of treatment you had. Did the MRI show that the AVM had shrunk?
My AVM was very large and in the right frontal lobe. It was too large for radiation. Surgery was my only option. I had two embolizatons in February and then brain surgery, opening the skull and removing the AVM. My surgery was in March of 2013. A few months later I was diagnosed with breast cancer and had a double mastectomy in October 2013. At the six month point from the brain surgery, my MRI was clear of AVM activity.
I had gamma knife radiation in Feb 2012 and had 2 follow up MRI/MRA at 6 mos and 1 just this month after a year. My neuro surgeon schedules my MRI/MRA’s and for the time bing still follow up with him as well as my neurologist.
Same here. My neurosurgeon is the one following me too. My next appointment is in March of 2015. Yes, I heard that one too, right side left handed.
Hello grandma, spinal avm here. Had the last big surgery 10. Juny 2013. Then next day contrast MRI. Then six weeks later control spinal angiography. And 2 weeks ago, the 1 year post check - with contrat MRI. The professor told me: See you next year........
My husband is scheduled to have his avm removed in September and our neurosurgeon said he’ll have a follow up angiogram a few days after surgery to make it’s all gone.
All of these follow ups are interesting! I had another angiogram while in surgery, CT scan a few hours after surgery, and one more CT scan a couple days later (my choice). My doctor has released me and I do not expect to go back for any more follow ups. My surgery was 6 weeks ago today (time files!).