Following several posts last year on my son who was diagnosed with an inoperable AVM, the doctor upon review of the original CT Scan said to monitor the situation and come back in 2 years for another CT Scan. At the time I mentioned if an Angiogram was warranted and he said no.
Being a worried parent and only one year since the diagnosis, I would like to know how often have other AVM patients had their AVM's CT Scanned for follow up testing?
Any thoughts would be very much appreciated...
Hello. Follow up testing is required for accurate treatment and diagnosis. Following the mri I had to find my avm an angiogram was done to determine exact location, size, and an embolization attempt. I suggest you request an angiogram or a second opinion.
I follow up every 2-3 years with MRI/MRA to make sure no change (I have not had a bleed and found out by accident almost 7 years ago). Mine is very large & in a bad location so I decided to leave it alone.
I agree with Patrice-you should request an angiogram or get a second opinion. It doesn't sound like your doctor knows much about AVM's. Best of luck!
My daughter has also been diagnosed with a large, inoperable AVM in an eloquent location. We consulted numerous doctors to learn what options we had (if any). The initial diagnosis was made via MRI and we subsequently had an angiogram and CT scan to determine if she had any particular worrisome risk factors. Each situation is different, but we are dealing with what may be progressive weakness and this is why our doctors have indicated that regular MRIs are warranted.
I would definitely suggest getting 1-2 other opinions. Good luck and we will be thinking of you.
HI Jake. My hospital invites me for an MRI scan every 2-5 years. This doesn't feel often enough. But I guess there are various factors which they have to weigh up. I have also had a couple of Angiograms done in the past and they showed my AVM was 'stable'. So maybe that is why.
Thanks for your reply. We will be contacting the hospital in June for a follow up MRI/CT as they have recommended. My son has stayed away from any other testing for fear of "Upsetting The Apple Cart" so to speak. Going to see what comes of the tests and go from there...
Sounds like a good plan. Best of luck to you both.