Anyone have any thoughts to share on the growth rate of their child’s AVM? My 6 year olds left cheek AVM appeared about three weeks ago and appears to be changing on a daily basis as we wait for more tests and doctors appointments. My concern is if we are wasting valuable time and losing the window for treatment/hopefully removal? I have called our ENT that diagnosed it and he doesn’t seem concerned but of course With being new to all this I’m worried. Any advice is greatly appreciated. We have an MRI on the 5th and appointment at Mayo Clinic on the 30th of this month. Thanks!
Sorry, not familiar with this kind of AVM.
Hopefully, someone with extremity AVMs will jump in to answer soon.
I would suggest you take daily or weekly photographs of the AVM, maybe even put a ruler in the photo for reference. Take from same position, same distance, same settings, etc. That might be helpful to the DRs concerning urgency.
Best wishes,
Ron, KS
I'm sorry I didn't get back to you sooner, Lulu's mom. A lot of the parents whose kids have facial AVMs are focused on the Symposium at UAMS this week. Not a lot can be done before the MRI, which is tomorrow. Try to get them to do it with and without contrast, so you get double the information. Take a digital photo every day, and take them to Mayo. Before you even get to Mayo, send the MRI on CD with the report to Swedish Medical Center in CO, Arkansas Children's and/or UAMS, Wisconsin Children's (to Patricia Burrows), and Boston. Getting opinions from everyone at once will shortcut the process, rather than seeking them one at a time.
You can also friend ConnieK, George (Nicole's dad), Ana, fortheloveofburkley, and sofia's page and get their feedback.
Thank you! You are great at responding. I really appreciate all the great advice.
Hi, Lulus Mom, how did it go with the MRI?
I strongly suggest you get a second opinion from one of the doctors listed above before you decide on treatment. My experience with the Mayo Clinic is you are assigned a doctor and they decide on the best treatment. Could be different treatment depending on the doctor you see. It is not a collective decision but one based on what that doctor thinks. They may have a lot of experience in them but how much does your particular doctor have.
Robin
Good feedback. A team approach is essential.
Really well. She did great. The radiologist said he was stumped. Said the contrast didn’t look like AVM but understands from the ultrasound why they went that way. I overnighted the ultrasound and mar to Dr Suen as he is going to review. Our Mayo appt got moved up to next Tuesday the 16th so that is nice. Also glad to have multiple people looking at it. Thanks for following up.
I appreciate the advice. I do have Dr. Suen reviewing her images as well so if we don’t get good help from Mayo next week we will go that route also.