Replies to This Discussion

Permalink Reply by Deb C. on February 13, 2012 at 8:15am

Good morning,

You make a valid point. My AVM was in my neck as well.

Take care,
Debbie

Permalink Reply by caro Head on February 13, 2012 at 8:20am

I just thought an extremity AVM was one found outside of the brain and CNS?
lol
Caro :)

Permalink Reply by lakersfan86 on February 16, 2012 at 6:46pm

in literature non CNS AVMs are called peripheral.

"For those of us with AVM's outside the brain. Facial, Spinal, Lungs, Arms, Legs...wherever!"

that's what the group description says so obviously it also aims for non extremity localized AVMs hence my proposition

Permalink Reply by lakersfan86 on February 16, 2012 at 6:36pm

Hey Debbie,

so I'm not the only one :) . May I ask from what vessels your neck AVM was fed ?

Thank

edit: I should add that my formation is fed from subclavian artery branches, luckily not from carotis or vertebral artery..

Permalink Reply by Deb C. on February 17, 2012 at 10:48am

I honestly have no idea. My doctor thought he was going to be removing some unknown benign growth, which turned out to be an AVM. I never have been given more information than that. If it helps, it was located on the left side of my neck. Wish I could be more helpful.

Take care,
Debbie

Permalink Reply by lakersfan86 on February 17, 2012 at 4:38pm

Ok, I was just curious. It's also visible on the left side of the neck in my case. The origin is not the neck but more the shoulder though.
So they did not know what kind of growth it was and just went to surgically remove it directly without prior embolization?

Permalink Reply by Deb C. on February 17, 2012 at 4:53pm

Since they thought it was some sort of benign growth, I went to a minor surgery center to have it removed. I neer head anything about embolization and the other things one generally has done to an AVM until I came to this site. Additionally, it was removed by an ENT surgeon. All he did was remove it and tie up the loose blood vessels. I had had an MRI done, and the radiologist said it was suspicious for lymphoma, but the doctor didn't trust the radiologist. During a visit to the ENT surgeon a year later, he said that an AVM would show up as bright white on an MRI. I have a copy of the MRI report at home, and I reread it. It said that the mass in question showed up as bright white on the MRI, which the ENT surgeon missed when reading the report.

Something else. Someone might have picked up on the fact that it was an AVM when I had two needle biopsies done, and they drew blood on both of them...

Permalink Reply by A'Lisa Hamilton on February 14, 2012 at 5:01pm

Mine's in my lung...I thought that counted? :)

Permalink Reply by lakersfan86 on February 17, 2012 at 4:38pm

If we changed the group name it would count more since pulmonary AVM is not much related to extremities/limbs :) I messaged the group creator, let's see if she can fix it

Permalink Reply by Deb C. on February 14, 2012 at 5:18pm

For the purposes of this site, I am fine with the name the way it is, and anyone with an AVM other than in the brain is welcome in this group, according to my understanding. But when I think of extremities in general, I think of the arms and legs, so the term "extremities" might be confusing to some. I feel that is the point lakersfan86 may be making. Please correct me if I'm wrong, lakersfan86.

I don't mean to offend anyone by my comments. I am here to be supportive and to acknowledge all sides of an issue.

Take care,
Debbie

Permalink Reply by lakersfan86 on February 16, 2012 at 6:50pm

That's exactly what I'm trying to say, thank you.