Time between embolization treatments

Hi my fellow vascular formation affected friends,

My situation:

My organism decided to grow a large peripheral High-Flow Arteriovenous Malformation with multiple arterial feeders under my clavicle.

* Diagnosis ~1 Year ago: MRT, histology, DSA. Small swelling on the side of my shoulder/neck. Swelling enlarged evidently since diagnosis. Each doctor I've seen said it's non-typical fast growth rate for an AVM.

* 1st treatment recently. DSA (angiography) -guided EVOH (Ethylene-VinylAlcohol-Copolymer) embolization of one nidal branch supplied by one feeding artery. Around 20% of total formation closed, no complications.

What's next?

It is planned to fill the entire nidus. If 20% are filled / session, it will take four more session to get the job done.

The physicians would like to wait at least twelve weeks before they will procede to occlude the next branch. Now I am wondering: Is that some convention?


I would like to ask you for your experienc: How long did your doctors wait between embolizations?

Also interesting: Did they explain why the delay is required? Was/is your formation growing evidently? What embolic agent was used?

Many thanks and best wishes!!

Hi Lakersfan. There is a sub-group here you may wish to join...
http://www.avmsurvivors.org/group/extremityavms

Hi,

My doctor has waited almost 9 months( was supposed to be around 6 but public hospitals are frustrating so it kept getting pushed back) between my first and second embo and then wants to wait a minimum of 12 months between my second and third embo's. He also does not want to do more than three on me so if number doesn't rid it all i'm not allowed anymore for a few years afterwards.

Hope this helps.

Hope all works out for you...God bless...............oh yeah i need to add you as a friend cause of your profile pic _ LAKERS_ ALL _ DAY_ EVERYDAY _ =======KOBE!++++++++++

I hope that this will help, my daughter has had 4 embo treatments all scheduled 8 weeks apart. She has done amazing with no complications to date. The only difference I see is that her avm is in her oppcipical lobe not under her clavical. God Bless you in your journey to a new life!

My wife had a brain AVM. We were 1500 miles away from the DR, don't know if that made any difference.

They did four embos with 7 days between them. We were told the multiple embos were to avoid shocking the brain and to allow for swelling to go down between. No issues for us.

Ron, KS

Thanks! I registered to that group.

Thanks a lot for your reply. It seems like you went through similar waiting time related frustration like me. Did the doctor explain the actual reason for the large intervals to you ?

And how fast is/was your formation growing ?

Thanks a lot! It's nice to hear motivating words from other people directly or non directly affected by the same disease :)

and thx for the add!

Hey, thanks! All the best for you and your daughter!

Thanks. That is interesting. They told me the same reason for the waiting period between sessions: The tissue has to settle before it undergoes modification again. But I don't see why this would take 12 weeks :]

Hiya, The reason we left mine so long is a few reasons, in NZ we don't have too many avm's so even though i have one of the best extremities specialists he still doesn't see too many of them so he wants to let them settle and see how they react to the gluey stuff. the other reason i am limited to 3 embo's plus the angiogram i had to start with is because my specialist doesn't want to embo thru my femoral artery too many times with me being younger as he doesn't want to create too much scar tissue over the sight since its keyhole on the left side of my groin every time (except for my first embo last feb when they needed to go in both sides, and that was NOT fun to wake up too!!!)

I don't totally know how fast its growing really but i know it is a very high flow, my mum remembers seeing it when i was a baby and the first time i noticed it was when i was about 8, we all just thought it was a bruise or birthmark. I didn't started having pain issues until i was about 18 or so and eventually from there we new i had to find out what it was. I guess i am just going to have to wait to see how long it takes to grow back if it grows back. although we have closed around 60-70% now and one more embo to take place early 2013!

Thanks for the great detailed explanation.
So it seems like you have typical AVM growth rate that seems to correlate with the growth of the rest of your body.

Regarding the growth rate, it's a bit different for me. AVM probably was there all my life, just being too small to be visible. The reason for that assumption is that I've had the problem of being tensed up in my left shoulder for many years. Then all of a sudden growth started to go very fast and I got a very large swelling within less than a year. It's even so fast that people who had seen many AVMs before said there is no way this could be an AVM because they will never show such a growth rate!
Since I think it's still going quickly, I'm in doubt about the use of 3months delays between sessions.

I don't understand the stuff about scars in arteria femoralis. Nobody ever told me it could cause problems and I never read about that before. I even asked a healthcare person during my diagnostic angiography if the multiple section of the vessel could cause a problem and they told me I shouldn't worry about it.

With your high growth rate i can understand wanting to get it under control as soon as possible. I think the main reason my surgeon is limiting me is 1) he thinks he can get almost all of it within 3 embo's and 2) he doesn't want to acess it too much since i am only 21 and it means that in the future if we need to do more on it we wont have to worry about damaged arteries too much, especially since i already experience pain on the puncture sights about 2 months after the surgery for a month or so and then it disappears.

Although I have decided to forego treatment at this time, the neurosurgeon I consulted with said I would need 3-5 embo's. He said they would do them a week apart and with the last one I would remain in the hospital for the crani. Go figure. Must have something to do with location, size, growth.....SOMETHING!