Replies to This Discussion

Permalink Reply by Kelly Nelsen on November 28, 2011 at 6:54pm

We waited 9 months before the follow-up angiogram for Ryan. They say that doing an angiogram around a year post-op is about right. I've also read and confirmed with Ryan's surgeon that doing an angio once every 5 years thereafter until they reach 18 is standard.

Permalink Reply by sam drummond on November 28, 2011 at 7:35pm

thanks kelly 9 months seems such a long time to wait i just want to know if they got it all i still feel like we are living on a knife edge x

Permalink Reply by Susan Troop (Lindsey's Mom) on November 28, 2011 at 7:13pm

Lindsey had an angio at 3 mos post-op because the surgeon wanted to let the swelling go down in order to get a better view of the area. She is then having annual MRIs for at least three years and then we will reevaluate at what intervals he will want to see her.

Permalink Reply by sam drummond on November 28, 2011 at 7:29pm

Thanks Susan i am just so worried i know the surgeon said he was confident he had got it all but there is always that fear in the back of your mind, did Lindsey have any after effects from the surgery? Luke had a massive seizure 10 days post op x

Permalink Reply by Susan Troop (Lindsey's Mom) on November 28, 2011 at 8:37pm

No, she didn't have any effects really. Hers was left frontal lobe, so they were mostly concerned about right leg mobility. Thankfully, she had no issues with that, or seizures. She was declared AVM free after the angio, and was still clear on MRI this past year. The surgeon said he might do another angio at three years but may not feel it is necessary. We will wait and see. The farther we get away from it, the less we worry, for sure.

Permalink Reply by Janice Brown (Andrew's Mom) on November 28, 2011 at 7:55pm

After both surgeries the follow up angio was six months post surgery. He was AVM free the second time so they said he needed another angio in three years. They acted that they would follow him well into adulthood, but we'll see what the plan is after his angio this coming year. I think they're all a bit different, but it sounds like they have him on the right track. It is very hard to wait, though.

Permalink Reply by Lillian on November 29, 2011 at 4:15pm

My son's follow up angio is 9mos but he will also need a CT at 8 mos. Apparently CT shows different info than angio

Permalink Reply by Thomas on December 27, 2011 at 11:03am

In Stavanger, Norway we wait aprox. 2-3 months after the resection for conventional angio. If there is rest of AVM in the brain the gamma knife is used as first choice treatment.

Permalink Reply by Diane -Paul Faherty Mom on December 30, 2011 at 4:38pm

I believe my son had an angio 3 months after surgery. He eventually had a residual AVM but with swelling from surgery and the residual was so small that it was not confirmed until 2.5 yrs later. So usually if there is a residual it is very small, and hard to confirm and you need time for it to grow and for a Doctor to definitively say yes it is a residual.
The good news is that my son was treated for his residual AVM with just an embolization one year ago, we just had angio 1 yr. post embo and residual is cured, completely gone, no further angio for 3 yrs. plan is angio at age 15 then no more. Treated by Dr. Pierre Gobin, probably one of the best IR MD'son the east coast. We had Doctors say they could operate on it possibly or recommended gamma radiation, but we continued to get more opinions and they were able to use just onyx- which is a glue. Dr. Gobin said the glue is gone it reabsorbed after it did it's job. he did not want to inject radiatin into a young boy.
I hope that you are worrying unnecessarily.
Just wanted to share a positive residual Avm story