Help! VERY ANGRY! Has anyone else had problems with GDC coils migrating out and uncoiling in facial AVM?

15 years later and still dealing with migrating coils!!
My son’s surgeon, Dr. James Suen, who saved my son’s life 13 years ago, just removed a 2 foot piece of wire on the RIGHT side of his Neck in the parotid gland 3 weeks ago from an infected cyst.
This was a very difficult surgery. I will spare you the story.

Hundreds of coils were jammed into the LEFT side of his upper jaw over a 2 year period beginning 15 years ago at a hospital in Washington, DC.
My son’s story which was posted 12-13 years ago can be found on this site.

Any information will be very appreciated.


Hello! I’m sorry to hear that your son is still struggling with so many issues associated with the coils! I can see that you posted back in 2016 about this being at least partially resolved some years ago but to know that he has just had to have more removed is quite horrific! How is he doing?

I can’t find posts related to you earlier than 2016. Did you have a different login in those days? It may well be that you moved email providers at some point and so the posts are on your old id. If you know what your previous id was, I’ll have a read.

Very best wishes,


Hi Richard,

My son is being very stoic. He has a long road to recovery ahead of him.
A year ago he had a surgery to remove the cyst by a specialist at John’s Hopkins in MD. He did not fully remove it. The wound in his neck never healed. It oozed, got infected and kept growing & was painful. That surgeon said he must have not removed the outer margins and would operate again. We opted not to let him do it.

My son could not ignore this anymore as it kept getting bigger, nastier & more painful.
Fast forward to the surgery I spoke about in the earlier post.
The infected cyst invaded a very large area that was pressed against the facial nerve and blood vessels & was also in his parotid gland. 25% of that gland had to be removed.
He now has a dime sized deep open wound behind his ear that needs to be dressed 3 time a day. To say that this is another nightmare that my son has to experience is an understatement.

I believe that the post from 2016 was my only one.
Thank you so much for your response.



Ouch! The really good news is your son’s stoicism, which I feel is far more difficult in a young person. I hope he fights on.

I do know that @Mel1315 had a large patch / wound on his face after some of his surgery which was getting him down but he recently had further surgery to try to get that sorted out. I believe it has been successful. So you’re not alone.

Power to both of you as you fight through this stuff!

Lots of love,


Good morning Richard. I just reached out to Mel. Thanks for the info.

I really appreciate your caring thoughts.

With love,

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Hi Bonnie,
As Richard mentioned, I’ve had a surgery few months back. Skin graft was necessary part of it so my ulcer went with it. I’m not sure whether I can provide you with any useful info, because everything I tried for the ulcer before the surgery was useless, and I had to put up with it for 4 years. And also my ulcer was more epidermal (one major issue was itching) ; I mostly consulted and took medicine from different dermatologists. It just didn’t heal because of the AVM underneath. From what I’m able to understand from your son’s case, his wound seems more deep. And your thread is about some issue regarding “GDC coils”; I’m totally strange to that. So I don’t know what is suitable for him.
The person who did my surgery was Dr. Subramaniah Iyer (Amrita Institute of Medical Science, Cochin). I know you guys have access to great surgeons and better technology; just trying to do what I can. Hope things get better soon for your son.
Also, thank you for mentioning me Richard.


Thanks Mel. I hope you are doing well.