Carlos' Arkansas Update - Fall 2013

Hi Guys, Carlos was embolized with Glue by Dr. Amole in UAMS and the facial AVM resected in two sessions by Dr. Richter.

The big one that went to the back of his head and was not resected dissolved between surgeries. All visible traces of the AVM have been removed.

We will return in a few months to check for re-growth, the one thing that troubles me is that I can now see a little spider vein cropping up on the other side of his cheek. The embo doctor said it has spread to the other side of his face and it was not in area he could embolize without affecting other veins.

Dr. Richter did not believe that part was AVM related, only time will tell.

I remain cautiously optimistic, we did not get the "obliterated" diagnosis I sought, but I was told we are "way ahead of this thing" and Carlos' despite swelling post-surgery (and the lovely scar running from his temple to his neck) has not experience any significant deformity until now.

Will come back and update once we get news from our follow-up. Finally, Dr. Richter's (new) staff has been amazing. Those ladies really care about their patient and you feel valued despite the bazillion patients they see day-to-day! They have worked with our school on all the documents to excuse Carlos, I am truly grateful!

Thanks for the terrific update, Ana. I hope the spider vein will be nothing. My son had a slightly reddish area above the eyebrow where his avm was removed that scared me for months after surgery. Since his one-year followup was clear, we decided it was just due to the trauma. I hope that is the case here, too.

Great news, Ana! Happy to hear that Dr Richter and his team did a really good job to treat Carlos and everything went well. Very encouraging for us (we're almost on our way to Little Rock now)
I hope the vein on the other side of Carlos' face has nothing to do with the AVM. Maybe this is just a dilated vessel caused by the (former) increased blood supply of the whole area...

Sounds great with Carlos, even though being cautiously optimistic. Unfortunately, with AVM this is how it goes. We were there in August and Dr. Amole did the embo and Dr. Richter removed basically everything from her throat. He also found a possible connection of veins with Sofia on the other side. Sofia hates when inspect to whole face or take monthly pictures just to verify any changes. I know what you mean from the new team, Amber has been great.

Thanks for posting an update, Ana! I hope the veins on the other side are normal. We all have the same fears here. I keep finding things with Anderson, his non-avm side's ear get hot red at times, but his avm ear doesn't. Richter says no, no avm on the other side but I find myself not believing and wondering whether later it will rear itself in a future angio. So glad Carlos is doing well. It is so reassuring though that are kids avm are being managed seemingly well (always this cautious optimism, just don't trust avms). The team is the best and are so kind. We will continue to check in with you and Carlos.

Thanks guys, I appreciate all the work the Little Rock team has done for us. God Bless them!

I know what you mean with the redness and how unnerving it can be. I too take 20 pictures every time I see a change... eek!!

Dancermom & Connie, I noticed you guys said something about a red areas... Carlos is now experiencing massive flushing... or redness on the AVM side. This has always been the case but I worry now that the AVM was "taken out" why is his face so red? I spoke to Richter and he said he was not sure what was happening but we could have a look and schedule a laser session the following day.

I am happy we have those resources available, I am sad and nervous about treating him again so soon after surgery. The symptoms are there!! There is heat, lots of little blood dots, major redness...

When are you returning to Little Rock, Ana?

I am not sure at this point, I have asked for a round of Keflex first, since that has helped him in the past.

I want to go soon, but will give his body a chance to repair itself for a few days first.

Hi Ana! Anderson has a couple of red areas on this skin where there is avm involvement. Sometimes the redness is more faint or hot than others. These are the areas being lasered, 4 times now in the last year. I am not convinced that the laser has helped but Richter says it will "toughen" up the skin for embolization done close to skin. Let's us know what Richter finds is going on with the flush areas. Could it be smaller avm vessels not removed, I wonder.

Connie, the Keflex did help reduce the extreme redness. It is still red, but less hot and considerably less red... When I asked Richter what he thought he said he did not know what it could be, but he'd be happy to laser the area for good measure : / Why is it so red and hot if the AVM is no longer there?? My theory is that blood still flows strongly through the area and it saturates the region... but now it has no AVM to flow through.

For us laser worked nicely, Carlos had a lot of spider veins in his face and they disappeared. Some seem to be coming back, closer to his ear, where they used to be closer to his mouth.. Carlos had a bleed today. This is really bewildering because Carlos has not bled since I applied Neosporin in his ear ulcer July of last year.

To have a bleed after all this surgery baffles me. Richter said all traces of the AVM were scraped. I hope this monster is not back so soon : ( Dad keeps thinking it was the banana chips, the school nurse said it was too much blood for it to be a dental issue. Luckily she was able to make it stop. Once he comes home I will assess him and the situation. I am really upset about this...