AV malformation info?

Hi everyone,

I have a cerebral angiography coming up soon. I’m looking for any personal experiences or recommendations you might have regarding hospitals.

Depending on what they find, there are three potential paths ahead: traditional brain surgery, embolization, and/or Gamma Knife. Has anyone here dealt with something similar?

Looking for your insights...

Thanks...

I can only suggest checking out the neurosurgery department over at Rib.

Neurosurgery in San Francisco

First, what’s the actual reason for these identical scans or procedures? Is it an aneurysm or an AV malformation? Typically, those tasks fall under interventional radiologists rather than neurosurgeons or neurologists. I believe you'll be in good hands with Dr. Smith in San Francisco...

It’s an AVM. So far, I've been told to look at San Francisco for neuro-radiology or maybe the New Hospital if they go the neurosurgery route... but honestly, I won't know what my actual options are until after the angiography.

Has anyone here dealt with this before? It's a rare diagnosis, and since we're in the US, finding specialists isn't exactly easy... but still.

Best, Grace Rodriguez16

Hey there,

I’m actually scheduled for an angiography myself soon, since I’ve been dealing with a cavernoma that’s basically "leaking a little bit on the inside" but hasn't broken out yet, plus I have POTS. I've got my appointment set up over at San Francisco, so I was really hoping to hear from anyone who’s gone through this specific scan—it’s the main thing helping my doctors decide if I should go the Gamma Knife route or try something else entirely.

Bumping this.
So, I recently went in for an MRI and a cerebral angiography.
The report mentions something about a spiculated hyperintense lesion on the right temporobasal extraaxial area, about 1 cm in diameter, with characteristics of a dural AVM.
Does anyone have any idea what this actually means or who I should see next?
They basically just handed me the results and sent me on my way.

Hi everyone,
I’m not sure how much this helps, but I was born with a venous malformation that nobody in America actually knows how to treat. They want to tinker around with it, but they honestly don't have a clue—they constantly confuse hemangiomas with vascular malformations (which, for the record, are split into six distinct groups: venous, arterio-venous, arterial, capillary, etc.).
I ended up having a successful surgery in Germany under a legendary professor and vascular surgeon named Dirk A. Loos. He’s a phenomenal expert and just a top-tier human being. I’m not entirely sure which specific areas he operates on since he's a vascular specialist, but in my case, it was the muscle in my lower leg.
Good luck!

Angela Hernandez40 said:To whom it may concern,
I’m not entirely sure how much this will help anyone, but I was born with a venous malformation that nobody in America seems equipped to treat. They want to tinker around with it, but they clearly lack the fundamental understanding. They constantly conflate hemangiomas with vascular malformations—which, for the record, are categorized into six distinct groups: venous, arterio-venous, arterial, capillary, and so on.
Ultimately, I found success undergoing surgery in Germany with a renowned professor and vascular surgeon named Dirk A. Loos. He is a phenomenal specialist and an exceptional human being. While he operates on various areas given his specialty, in my case, the issue was located in the calf muscle.
Best of luck!

Angela Hernandez40, would you mind sharing a bit more detail regarding Professor Loos? Specifically, how did you manage to find him?
Did you have all your diagnostic tests and the initial diagnosis completed here in the States, or was the entire clinical workup performed in New York City?
Is the issue completely resolved now, or is there a need for follow-up procedures? And if it's settled, could you give us a ballpark idea of the cost, even though I realize it must vary wildly depending on the specific case?

Did your condition only manifest once you reached adulthood?
The reason I ask is that we have an infant dealing with a vascular malformation in the lower leg and foot, and any information at all is precious to us, especially since it feels like no one in America knows how to handle it.

Dadi21
Sent you a private message.
Best,

Jeffrey Booth38 said:Angela Hernandez40, could you share a bit more about Dr. Loos? How did you guys find him?
Did you get the initial tests and diagnosis done here in the States, or was the whole workup handled in New York City?
Is the issue completely resolved now, or will you need to go back for follow-ups? Also—if you don't mind me asking—roughly what kind of cost are we looking at? I know it’s totally case-by-case, obviously.

Did this only show up once you were an adult?
The reason I ask is that we have a baby with a vascular malformation in the lower leg and foot... any info helps because, honestly, nobody here in the US seems to know how to handle this.