I am wondering if anyone has had a facial AVM that has not recurred after resection? I'm worried that my son's AVM might get more aggressive if we have it resected. I am wondering if we should just have it embolized instead and wait and see.
In case of resection, will they not embolize prior to surgery anyway ?
They will embolize before surgery, but I am wondering whether to resect or not afterwards, as the proposed surgery for resection seemed extreme and might possibly paralyze one of my son's eyebrows. If the embolization truly devascularizes the AVM, do we have to resect it?
One of the other moderators on this site had a facial AVM. Here's the link to her page. Reach out to her and I'm sure she can help you. http://www.avmsurvivors.org/profile/ShalonWhitgob?xg_source=profiles_memberList
what embolic agent are they going to use and are they planning on filling up the entire nidus or just a proximal embolization of feeders ?
what is the motivation for resection?
did you get a second opinion?
why I am asking: embolization success depends on the way it is done. if you search pubmed.gov , you will find that it is generally accepted that in order to prevent recurrence, the entire nidus must be embolized.
selection of embolic agent also has an impact.
personally I focus on the embolization now and only if the lesion is under control I will consider resection for aesthetic motivation
Thanks -- that's helpful. NBCA by direct puncture is what they're proposing. I don't know if they were planning on embolizing the entire nidus -- I will be sure to ask. I have not gotten a second opinion yet. Do you have recommendations for who we should go to? We are in Maryland. Also, can you tell me which article to look at that refers to embolizing the entire nidus?
You're very welcome.
No recommendations from my side, sorry. You might browse the 'extremity avm' discussion forum, also see Trish comment below.
You should also ask them why they chose NBCA embolic agent. Options exist.
Article discussing AVM recurrence in patients with only partially occluded nidus.
Complete angiographic obliteration of intracranial AVMs with endovascular embolization: incomplete embolic nidal opacification is associated with AVM recurrence.
Reig AS, Rajaram R, Simon S, Mericle RA.
Department of Neurological Surgery, Vanderbilt University School of Medicine, Nashville, Tennessee 37232, USA.
http://jnis.bmj.com/content/2/3/202.abstract (Journal of NeuroInterventionalSurgery)
Thank you so much! I'm so grateful you responded. We will definitely find out whether it is possible to obliterate the AVM with embolization alone.
Hi, my son is is 14 and has been a patient of Dr. Suen’s since he was 2. His first major resection of his facial AVM was done by Dr Suen and Dr Waner. Dr Waner used to work with Suen in Little Rock and was trained by him. They are both excellent doctors but you will definitely be guided in the right direction by contacting Dr. Suen. He is very good at getting back to you and answering all of your questions. We live in Richmond and travel to Little Rock. We discovered a long time ago, on an emergency basis, that John’s Hopkins was not able to help us. Nor was Boston’s Children’s, Dr. Berenstien at New York, Doctors in San Francisco, Florida, etc etc. I hope this helps and I wish you all the best. Dr. Suen is extremely busy and will be retiring in the next few years but always finds time to help. This is his passion and he is searching for a cure.
He is the best person to consult with. Good luck!
Thanks, Monica -- that's very helpful!