Advice needed! very large internal mammary AVM

We had to visit three different cardiologists to finally get a proper
diagnosis for my husband. His is not cranial, but I hope I will be able
to receive some support/information from this site. I believe his is
"giant." It is in an odd spot, and his cardiologist said he researched
it and couldn’t find any documented cases of an AVM being in the
internal mammary. I did find one case study on a 1 day old infant, and
it when down into her liver. I’m posting his CTA, which shows how large
it is. The cardiologist said he doesn’t know where it ends. He has a
catheter procedure scheduled for 9/3/10 with an interventional
radiologist. They said they are going to try to coil/glue/whatever… it
to treat it. I’m worried about their plan and wonder if we should seek
second opinions before undergoing the procedure. Any advice/info will be
greatly appreciated from anyone.
453-JefsAVM.jpg (910 KB)

Hi Tabitha,

I feel like a second opinion is usually a good idea, especially when a doctor has some uncertainty (not knowing where the AVM ends). It may be that no one can be more certain, or it may be that you find a doctor with a little more experience with this kind of AVM.

However, if you’ve seen two different cardiologists before, this doctor is actually your third opinion, right? Unless you can identify someone in a more relevant specialty, or someone with more expertise in this kind of AVM, this doctor might be the best bet.

JH

JH,

Thank you for responding.

The reason he doesn’t know where it ends is because he can’t see from the images from his CTA, but the cath procedure will be definitive. The interventional radiologist will be the one doing the cath, and possibly repairing. My uneasiness comes with the experience of this particular IR. I had to take it upon myself to call the cardiologists office and ask for a number to make an appointment to meet the IR. Isn’t it normal for the patient to meet with the IR before the procedure, kind of like you’d meet with a surgeon before surgery? I get that the angiogram isn’t that huge of a deal (although it does carry a risk of stroke and hemorrhage), but he may be getting a coil, glue, etc… Isn’t it important for him to go over the procedure and what he’ll be using as far as for the embolism? What the risks are, care post procedure, etc?

Anyway…is there maybe a thread on the forum where people recommend IRs that are experienced with embolizing AVMs? That just made me think of another one of my major questions. - From my research, I have read that large AVMs are usually unsuccessfully repaired with embolization. Do you know anything about that? I’ve read that it usually takes a series of embolizations, or surgery, and that it is “hazardous” to try and embolize large AVMs. My husband’s is definitely bigger than 6cm (I’ve read somewhere else in another post that anything larger than 6 cm is considered “giant”).

Do you know of any good websites with information on embolization. I’ve googled til I can’t google anymore…If I wouldn’t have researched after finding my husband’s murmur, he would still be walking around without knowing what’s in his chest! The first two cardiologists were clueless!

Tabitha