I've devoted most of my career to treating vascular malformations and I am frustrated by the fact that people without proper training and experience with these conditions continue to try to treat them. Glue embolization and even Onyx are usually ineffective in treating AVMs outside of the brain. In the proper hands, 40% of AVMs including a large number of pelvic AVMs can be cured. Receiving the wrong treatment can actually make an AVM worse or much more difficult to treat properly in the future.
I hear you and share your frustration, MD Milwaukee. It's one reason why we try to steer people to those doctors who are most experienced. I can't understand why in the age of the internet, the expertise doesn't "trickle down," so to speak. And I worry about what happens when certain key practitioners retire.
M.D Milwaukee: Thank you for your contribution and thoughts. We are currently waiting for our 14 yr old daughter’s doctor to come up with a solid plan to treat an AVM on the left side of her forehead as well as, how to treat internally since her AVM is involving the opthalmic artery. 2 diff. Doctors (got 2nd opinion & are we are scheduling a consult with a third doctor since the very first one is dragging his feet) both have mentioned glue and onyx and but are against using “alcohol” embolization due to the complexity of her AVM. 2nd opinion doctor is very against using ONYX when treating the part of the AVM that is close to surface of skin. Are there other methods for treating the larger external/facial part of AVMs?
Katherine, have we talked yet? My son’s AVM was on the forehead, and also involved the ophthalmic artery. He had a glue embolization at one hospital, which was quite risky and did not stop the AVM. It was resected by Dr. James Suen at UAMs about nine months later. He has been AVM free for about three years now.
Dancermom: I’ve been a bit of a silent participant if this site:) I’ve felt a bit overwhelmed and completely unsure where to turn, so at times, I’ve “pretended” that Baylie doesn’t need treatment…if that makes sense. I think it was a way to let my mind process this. On top of that her neuro interventional doc has really just been inactive in keeping me informed…I don’t even know what the next step is and Baylie had her angiogram 12/26. I am open to hearing any of your thoughts and staying more active in these discussions. How did the doctor treat the opthalmic artery part of your Son’s AVM? Thank you for reaching out to me:)
I sent you a friend request, Katherine. :)
Just to share info/add hope - I had one almost on the forehead - it was in the corner of my eye, on my nose. It was connected with both the ophthalmic arteries. The process was risky and nervous but now all seems fine.
They embolized it. I guess with glue. (a bit of a language issue here - I haven't figured out, what onyx is.. )
And then a month later they resected it.
The fact, that you got into contact with dancermom, is very super - she is great!
She helped me a lot. As far as my experience goes - talking does help a lot.
Every AVM has to be assessed individually weighing risks and benefits of different techniques, depending on the location of the AVM, the type of blood vessels making up the AVM and the long-term plan. If the AVM is curable by surgical removal, then preoperative embolization is done using the safest technique possible, because it is only needed to decrease the blood flow during surgery. If the AVM is not amenable to removal surgically, the techniques should be aimed at curing or at least permanently closing as much of the AVM as possible. AVM with large arteriovenous connections (fistulas) may be most efficiently closed with glue or Onyx, but those with small channels should be treated with ethanol, because it is the only agent that will penetrate the actual disease [nidus] and destroy it. In that type of AVM, glue and Onyx tend to close the arteries rather than the AV malformation and this can actually make the situation worse. On the other hand, alcohol can only be safely injected directly into the nidus, so if it is used by someone without experience, and injected too far away from the nidus, it can cause devastating complications. The most important thing you can do is to make sure your doctors clearly explain their plan and indicate that they have significant experience and good previous results treating AVM, using the technique they propose.
MD Milwaukee, have you had a chance to work with Sclerogel?
I believe it has been approved in Europe, but not yet in the U.S. I am hoping it will pack the punch of ethanol without the same level of risk.
With all due respect, M.D., there are those of us out there that have been treated quite effectively with Onyx, for an AVM not inside the brain. I have been lucky enough to be treated by one of the foremost experts in the world on the subject, here in New York City. I have a rare one in my chest and my LIVE was saved thanks to the treatment and the use of onyx.
Your statement above comes off a bit "know it all". You are frustrated because everyone is doing it wrong. That's really an unfair statement, and there are people in here that could find it offensive. It incinuates that we all are being treated incorrectly.
You may not have meant it that way but it is certainly how I took it. I take offense to being told that all doctors are wrong. They aren't.
Delight, go ahead and ask the members on the Canada group (click on Groups to fins it). They should be able to give you recommendations.
Alan, I reread MD's message and don't see what you are seeing. A foremost expert would not be a person "without proper training and experience." From the perspective of someone who has read every post here for the last three years, we have a lot of members with non-brain avms whose initial doctors were overconfident and inexperienced, and the situation after treatment for these folks is is generally worse instead of better.
You are entitled dancermom. But to me saying, "even Onyx are usually ineffective in treating AVMs outside of the brain.", is telling me that my doctor is wrong. If MD had said, "In my experience, I have found.....". But to not put it that way, to me, is a blanket statement. It is saying that if you are being treated by onyx, odds are that it is wrong.
That's not fair, and if I didn't know what was going on with me, it would make me question the treatment I have received. MD says it's typically wrong. The implication is clear to me.
You don't have to agree, we all take things differently, we are all different people. I find the statement offensive, appreciate your point of view, but still find MD offensive.
Thanks for reaching out Dancermom, you, on the other hand, are not offensive in the least. An admirable moderator for this group :)
M.D.: Thank you for your informative response; that helped a lot.
Thank you Mia:) B’s docs did briefly mentioned resection. How did they do a resection; what exactly is that?
I sincerely apologize for offending you and any other patients who have been treated with glue or Onyx. I agree that in the right hands, and in certain types of AVM, both agents are effective. Clearly, you were treated by an expert, who knows how to use the materials appropriately. Thank you for setting me straight.
I was involved as a consultant to the company that is trying to get the product approved in the USA. This product however has been developed for the treatment of venous malformations. It does not solidify quickly enough to treat AVMs.
For venous malformations, I have developed a technique of using multiple agents to produce really nice results without using ethanol. In my technique, I inject an agent to cause some clotting in the venous malformation and closure of the outflow draining veins, and then I inject a second sclerosant that has a different mechanism of action. The treatment is easier to recover from than ethanol sclerotherapy and appears to act more quickly, that is with less procedures, than foam sclerosants alone.
Fewer procedures sounds terrific, as it gets difficult emotionally and physically for these patients to carry on after a large number of procedures, not to mention the financial strain. Fewer procedures also means fewer interruptions to daily living. Thank you for your continued efforts on our behalf, MD. :)
Resection means that they just cut it out. They cut into the skin and then closed the still opened blood vessels with what they called were clips and cut the malformation out.
They did it in cooperation with plastic surgeons so the scar looks different from the most classical scar.
Now the lump I had before from the AVM, is gone. There is somekind of a thicker mass under the skin, where the AVM was. But much smaller than the AVM itself was. And it does not pulsate and it does not look different. I guess just a bit of scar tissue.
Emotionally for me, with my specific case, the resection operation was much simpler than embolization. After embolization I spent some time in the ICU. After the resection operation, I woke up in the special post-op room. Was there for about an hour. And then back in my regular room.
But embolization was needed to make the resection operation simpler.
Risks are with everything. But there is also hope :)