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AVM Survivors Network

Avm left cheek


#1

I had coils (4) put in my left cheek in Sept 2015. All is good now, however is there anybody out there who has had the same???

Thanks Jackie


#2

Hi Jackie,

I had could placed into my lower right side jaw. They worked great and I probably had them for roughly renters when mine started to poke through my gums. Whether or not it was because I had many surgeries in between that time, we don’t know. I then had them all removed.

Good luck with everything,
xx Debby


#3

Coils in a facial avm can cause problems later on, Jackie; I know a lot of folks who have had them removed later. I would suggest getting a followup opinion from one of the docs who really knows facial avms. Sending a message to the facial avms subgroup (click groups to find it) should help you connect with others who have had similar experiences.


#4

Hi Jackie,
Coils can unwind & move from there original location. What is the status of your AVM? Is your doctor an AVM specialist? All things need to be taken into consideration & being proactive in your treatment is a must.
My son had many, many coils and glue (too many to remember) put in the vessels of his left cheek to stop the flow of blood. He had been seeing a This was 9-10 years ago. He will be 21 soon. Shortly after, my son started having high fevers, and infections that no one could seem to diagnose. He had several pic lines with many rounds of antibiotics & numerous hospital stays. The doctor (Interventional Radiologist - we knew nothing about AVMS at the time) was adamant about it not being connected to the coil placement because titanium is sterile & doesn't breed infection. after almost 2 yrs of this all the doctors trying to find the cause & eradicate the infection told us there was nothing further they could do. Fortunately we found the surgeon, Dr. Suen in Little Rock, Arkansas who immediately told us that the coils could most definitely be the cause of the infection.
We live in MD. My son had his first major surgery with Dr. Suen who removed many feet of coils that were embedded everywhere in his chhek, palate etc. There was so much necrotic tissue & infection inside that he cleaned out. There were also coils that he could not get to. Jordan still has coils that have invaded bone & tissue in his jaw that can not be reached. Drs. are unable to view the areas using CT, X-rays & MRIs because the coils block the view.
I do not tell you this story to frighten you, but to educate & ensure that you have as much knowledge about AVM's that you possibly can. I could go on for hours.
The great news is that my son has been in remission for a few years & this was the first summer that he did not have to go back to AK to have an arteriogram to check the Status of the AVM. We do know that he will need to be continually monitored. We were so blessed to find Dr. Suen.
Fortunately there has been so much advancement in this field since we first started, but still a very rare Disease that many doctors have no clue as to how to treat.
Sincerely,
Bonnie

Please feel free to contact me.


#5

Hi Bonnie
First of all sorry to hear about your son’s ongoing problems, and that has been going on for a long time now.

Firstly I am 57 living in New Zealand and had never even heard of AVM OR AVF until I felt this small movable lump last July. This was never sore to touch. This was treated by inserting the 4 coils into the area in my cheek. There have been absolutely no after problems at all so I assumed this is the end of it. I had this done by an interventional radiologist, who had not done this in anybody’s cheek before.
All I know is there is a 50/50 chance it may come back.

I really appreciate the email as there. Seems to be nobody in NZ who has had this in their cheek…

From what I read it appears most people are born with these???

Thanks again Bonnie

Cheers Jackie


#6

I do not personally have coils. I get alcohol embolizations on my facial AVM. From everything I have read, and from the specialist I see, coils are not the best way to go. I see Dr. Wayne Yakes at Swedish Medical Center in Englewood Colorado if you are looking for a different MD.


#7

My daughter has coils put in her large facial avm and they did not help. It was totally obliterated by alchohol txs. If you would like more info pleased contact me at ■■■■■■■■■■■■■■■■■■■■ This was by Dr yakes in Colorado. We live on the east coast so it was a plane ride everytime.
However it is gone now! Some of her vessels were as large as
fingers.


#8

Is there anybody in New Zealand who has had a AVF in their cheek?
I have had 4 x coils inserted?
It appears most of the info I read is about AVM/AVF’s that have been with most people for many years.
Mine only appeared when I was 57 years old.