I don’t know anything about ‘debulking surgery’ but I’ve seen something on here about that before. It’s my current understand that an AVM, on the body anyways can’t be removed because it will grow back. Is there no way at all to remove some of it once it becomes too large? My embolizations have made my affected area become much larger so pretty much my entire buttock and hip is the size of a watermelon, and keep in mind I’m petite 5’3 115 lbs so as you can imagine it’s quite uncomfortable and inconvenient and getting to the point to where I can’t fit into my normal clothes anymore.
@moonglow500, have you used the search engine on the site? When I used the magnifying glass and keyed in “debulking”, I got quite a few hits. Please remember that some of the threads that will come up are old, and there may not be much response if you add to the thread. On the other hand, if you add a comment to an existing thread, the others on that discussion will be notified. (If they haven’t changed their email address.)
Off topic, but every time your avatar comes up, I see that beautiful cat with the “come smooch me” expression. Tell me about him/her!
Seenie
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It’s actually just a random cat I found on the internet that I thought was cute! Lol if I knew how to Add an image as an attachment on here I could show my my actual cat and dogs lol 
When you’re creating a post, there’s a little letter-tray and up arrow icon in the bottom right corner.
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I had a debulk of the lip a few years ago, they used Onyx to stem the high flow AVM. But there were complications.
May be better in an area that is less visible, and if they manage to stem bloodflow beforehand.
But as you say it is likely to return, maybe not in the same area but nearby which has happened to me am afraid, and to the point they are now saying they can do nothing else, and is inoperable. Am just waiting now for a major issue in all fairness.
I would think hard regarding having it done, my situ was if i hadnt my lip would have given way and i would have died. So for me its bought me some time if nothing else, but now i think i have reached that time. It has taken say 6-7 years to catch me. If you have other options at all do all you can to research.
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I would also say, while it may be uncomfortable etc, you must decide within yourself if this is something you can or can not live with. Only you can decide. I can totally understand that these things can affect us mentally also, but in the same breath i think i would rather be here than have intervetion surgery that might make things look better in the short term but cause even further issues down the line, if not cause serious life threatening issues.
It really is a tricky one, i am also unsure which country yo are in, but if its the UK then i can only go by my own experiences with debulking. Yes it looks better slightly, yes it had to be done, but here i am again dealing with it in another location, which cant be operated on now, well not here in this country.
Unless its causing you major issues, life threatening or metal strain then i wouldnt, but again its a choice only you can make based on info which really does have to be reliable.
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I definently agree, I haven’t heard much from people who have had it done, but I haven’t heard any success stories either. In my case my doctor said mine is so large that he would have to remove so much of my body that I wouldn’t be able to physically live.
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I am going to post up some pics in the next few days, of before my AVM during and after debulking. I unlike some people have been lucky as far as how my face turned out afterward, and not because of the expertise, because they messed up. Yeah i have a very bad condition but you would never know really just by looking. But i will defo get some pics up, so you can see how my face turned out and during , oh mee lol it aint good during.
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Before my avm i will show how my AVM progressed, then when it was at it greatest size, then after surgery and now. As said to look at you would think yeah, something happened but never know just how seriuos my own condition really is.
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I think that’s one of the toughest things about having an AVM, is people not understanding how serious it is, even a lot of doctors. I know it’s not their fault entirely but it drives me nuts! Lol
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Yeah I hear you for sure.
It is beyond frustrating it really is.
I have just made a call to my doc for a referral, but I know already what they are going to say, same as last time but I really need to know where I am, again even though I know already. My current surgeon will tell me they can do nothing he as far as I know doesn’t specialise in this field and is a plastic surgeon 
. But I am going to ask for another opinion and want a specialist in the AVM field and not necessarily a facial specialist just someone who knows exactly what they are talking about.
Pain is getting worse and it’s visible again just lower now. Have you been offered the debulking ?
This will only make it look slightly better regarding size and possibly just the look of depending how you heal and if no complications.
I had many but looks ok I suppose, could have been s alot worse. I posted a pic in my top teeth taken out topic.
My debulk did not really treat the AVM.
I am now getting to the point I can’t be arsed letting this dog me anymore, I hadn’t given it too much thought over the last 6 years or so, but now it’s becoming a problem more than usual.
I wish you well and hope whichever decision you make works out for you.
Ask as many questions as possible, are they going to embolism it beforehand in order to take away some of its size ? Because I doubt the would just operate if it’s a high flow.
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I have not been offered debulking as they said they would have to remove too much of my body, too high of a risk for massive blood loss, it would just grow back etc. I’m not sure where you are located but I would recommend getting a second opinion from Dr.Robert Rosen in New York. He has been treating AVMs longer than anyone and is the one who created the current techniques and treatments for AVMs. He is also the one that fellowshipped and taught most of the doctors who currently treat AVMs. I would very strongly recommend seeing if you can get in touch with him. He will give you a free phone call after you send him your scans and medical records and he will tell you what he thinks and if he thinks he can help you significantly. People from all over the world and all of the country come to be treated by him. And he told me he’s never turned anyone away because they didn’t have insurance or lived too far and couldn’t afford to get to him. He will try to find a way to get you financial help if you need it in order to be treated by him. Please consider giving his office a call.
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You know something I just felt it right there, HOPE just in reading your post.
I know these people ain’t miracle workers but even the fact someone would go this far to help someone is heartwarming.
I am in the UK and to be frank no chance of getting over.
I did read that your professional had said it would mean removing too much but I had typed my reply and meant to edit.
I duno if anyone has noticed but I make quite a few spelling mistakes and have to edit constantly lol.
Let’s blame the AVM ha ha ha.
Thanks for the post I will defi look into it, I have mentioned DR Suen before to my Dr and surgeon but they were very dismissive and didn’t really care, so getting these guys to send my scans etc is a longshot.
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Again thank you so much for your advice, it’s more than I ever had over here from my pros
Like I said I had that small feeling of hope for a moment, so thanks 
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mwilson2@northwell.edu
(212)434-2606
That’s the phone number for his office and the email for his assistant which is who you would be giving your information to before you hear from Dr.Rosen.
I’m not sure how it works at your hospital but at mine I just filled out a form requesting my records and scans I had one copy sent to Dr Rosen’s office and one copy sent to myself that I emailed pictures of to ms.wilson because I wanted to make sure they would get it. They get very busy so you have to call them and make sure they received everything you sent them and if you continue to work with them after that point they don’t always remember to call so you have to stay on top of them. But seriously just consider it because like I said people come from all over the world to see Dr.Rosen and he told me he doesn’t turn people away over money or distance issues he will get you the necessary help to make it out there. I don’t want you to get your hopes up but please if you are willing to at least let him look at your records and tell you what he thinks. I would really like for you to potentially have a second chance. As someone on here once told me, if you are going through hell, keep going.
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Thank you, I mean that from the bottom of my heart.
I am gona try, but in the UK we have to go through a referral process from ours docs, which I know is gona take months to say the least.
And even then if they are willing to do that, but I will push.
I really am starting to get stressed, coming back on the forum is great but also makes it difficult as am sure it must do for others.
I hope your own battle is hopeful too, would imagine to a point it’s a visible issue when wearing clothing, for some that not only have an AVM to deal with one that can be seen/visible brings other issues too, people can be very harsh, but again that goes back to a lack of awareness and understanding.
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But best go it’s 12.28am here in the UK and I am up at 5.30am for work 
but hey needs must
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Well if you find anything out keep me updated, I would really love to hear your success story one day hopefully in the somewhat near future! 
Fingers crossed 
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Likewise, I wish you well, again thanks.
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Email sent, fingers crossed 
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