I have a large AVM under my clavicle which expands heavily to the side of my neck. Despite cerebral perufsion problems it is an aesthetical issue for me as well. Therefore I am wondering about a possible resection after all sessions of embolization are over.
Does anybody have experience with the resection of peripheral AVMs after undergoing embolization?
I had one embolization followed by surgical resection of an extensive AVM on my left ear and the surrounding scalp area and in my salivary gland. I ended up losing the top half of my ear and most of the skin and tissue surrounding my ear and had a skin graft. Unfortunately the AVM returned right away in my case and is everywhere it was before and I will probably lose the rest of my ear in the next surgery. That was just my experience.
I had an attempted resection and went from one nidus to several - growing back in the hip and, ultimately, creating the need for further embolizations and sclerotherapies. I am uncertain of the science, but it has been supposed that the AVM is embryogenic in nature and can not be removed without it returning. I say this only to make you look into the procedure further and to make absolutely sure that the long term outcomes are exactly what you are signing up for.
Kim, thank you for your reply. http://en.wikipedia.org/wiki/Parotid_gland this one ?
May I ask what embolic agent your physicians used ? How could it happen that it fully returned to the pre interventional state? What kind of monitoring did you undergo? Did you get extra opinions ?
I read in some publications that recurrence is a big problem with AVMs (resection or not) and that it's important to get the entire formation under control so that it will less likely return.
I really hope the best for your upcoming treatment. Obviously aesthetic impairment is also a topic in your case so you might understand my motivation. As for me it is not the worst thing I'm worried about by far but it is a topic nevertheless and I think it's not a crime to worry about this..
Thanks for your reply Dan. I'm sorry to hear that you had a problem with your formation returning but it sounds like everything is under control now? It is a very interesting point you are making. I keep reading that recurrence is a major problem as mentioned above. I think the exact question to ask here is: Does recurrence rate correlate with therapy type?
Various sources say that no matter what the approach is, it must always be done entirely. E.g. in case of embolization with EVOH the nidus must be entirely filled up rather than just performing proximal occlusion of feeders.
And this scheme also seems to apply to resection; "Treatment of AVM has a high recurrence rate and incomplete treatment of AVM can make the lesions larger than before treatment in a short period of time." ( http://www.ejves.com/article/S1078-5884(06)00043-8/fulltext?refissn=1533-3167 )
The problem is that AVMs are not fully understood so nobody can tell why they return. I have seen pathological reports that state there are raised levels of certain growth factors inside AVM probes and some reports that claim several genes involved with angiogenesis are mutated in AVM people. But that's all very vague. The fact is nobody can tell the exact mechanisms, so nobody will be able to tell us why vascular malformations return.
We are too few: Research money goes different places like neurodegenerative, cancer, cardiovascular,etc. just stuff with larger purblic interest (=>>> revenue)
I totally agree with everything you said this is why im trying to force the issue in my last discussion so we can raise funds and get the necessary people to specifically research AVMS If we do not stick together speed up the process i fear that we will be waiting a very very long time . Getting together an AVM Research fund governed by the AVM survivors may sound far fetched but we do require a change of direction in thinking. nobody will help us we must help ourselves .
Hi, Lakersfan, My son is having a resection the week of March 19 in Arkansas. We have to resect, as the AVM is very close to the eye and can't be left alone or treated just with embolizations. I'll keep you posted.
Resection can be possible if it is localised. I have had a resection in my arm as my AVM was 4.5cm and localised but I now have a large area in my foot which is diffuse. My surgeon wants to put in alcohol injections to try and make the veins shrink. He said that he will not operate before that as it was so spread out that he could not guarantee that it would work. Am waiting on confirmation as to when this is going to happen. Unfortunately because I have Cowdens I will never be free from AVMs. Hopefully these injections will have an effect. Lesley
Hi, Lakersfan, we are home again after my son's resection. He is recovering nicely. The surgery took about 3 hours to remove an AVM about half the size of your thumb. The AVM was well localized. The depression was filled with Alloderm. There was no blood loss to speak of. The stitching is very neat, and the scarring shouldn't be too bad. If there is residual AVM, it will be dealt with as soon as it appears, but Dr. Suen is hopeful he has gotten it all.
Thanks dancermom, regarding post-embolization resection they say say it's good to remove small focal AVMs while resection of large AVMs is ineffective (citing Bradley et al, 1999; Seccia et al, 1999; Richter et al, 2007.. I might go through these papers and summarize the important findings). In my case the lesion is large but also localized and well defined. I decided to see surgeons who did post-embolization resection of AVMs after the last embolization therapy. Maybe one of the above but that's a while still..
Regarding the statement about malignancy that's intersting, but they don't show any data so let's wait and see what they have. The article is from 2010 and as of now it doesn't seem to me this data was never published http://www.ncbi.nlm.nih.gov/pubmed?term=%22Buckmiller%20LM%22[Author]
But LM Buckmiller has some interesting experiments and it should be listed at http://www.avmsurvivors.org/group/research/forum/topics/laboratories-investigating-vascular-malformation