AVM-arteriovenous malformation

amother

Sun, Jan 28 2024, 3:31 pm

Has anyone had experience with this with their child before?
Any advice?

amother

Salmon

Sun, Jan 28 2024, 3:39 pm

My child has something similar.
The best place for treatment currently is in CHOP. Dr. Denise Adams.
Or if head/neck area Dr. Alejandro Berenstein, Mt. Sinai.

Where are you located? What’s the location of your child AVM?

If you want to connect, lmk, I’ll post my sn or an anonymous email address.

amother

Tealblue

Sun, Jan 28 2024, 3:42 pm

Where? In the brain?
A 19 year old girl I knew from work had one, it was discovered because she had frequent headaches. She underwent treatment, they tried to block it up to remove the risk of rupture and bleeding. But the blocking didn't go well, she had weakness in her arm and leg on one side afterwards.
But every case is different.
Talk to a neurosurgeon if you haven't yet.

amother

Mon, Jan 29 2024, 2:59 pm

Hi Thanks for your replies.
He has it on his upper arm.
I am in Israel but I travel to the Stated for YT and summers etc. so if needed I can take care of it there.
The specialist I went to today (here is Israel) said for now to leave it since its not bothering him, but he wants him to have an MRI to see it more clearly and to get a clearer picture for future treatment.
I am concerned to have my young son sedated for an MRI that I don't know if it's so so necessary.

What has your experience been?

amother

Salmon

Mon, Jan 29 2024, 3:11 pm

amother OP wrote:

We’ve been doing sedated MRI’s since a week old… how old is your son?
In the beginning I thought no way to sedate such a young child, but by now it’s no big deal…

I would definitely recommend you reach out to CHOP CVAP, you can start the intake process and this way get a 2nd opinion. They may be able to do remotely, but even if not, to get the ball rolling for when you come to the states.
https://www.chop.edu/centers-p.....ogram

Lmk if you need anymore info. It’s hard because so rare, but we’re in this for a while now…

amother

Mon, Jan 29 2024, 3:21 pm

Thx so much! My son is 3.
I only noticed it 10 months ago.
What does that mean youre in it for a while?
Should I PM you?

amother

Salmon

Mon, Jan 29 2024, 3:29 pm

amother OP wrote:

Thx so much! My son is 3.
I only noticed it 10 months ago.
What does that mean youre in it for a while?
Should I PM you?

You can pm

I’m going back to amother for now. When you’re back online please post and hopefully I’ll see it then, or post with your sn. Thanks

Last edited by amother on Mon, Jan 29 2024, 5:04 pm; edited 1 time in total

amother

Salmon

Mon, Jan 29 2024, 3:31 pm

Lmk you saw my above post because want to go back to amother

amother

Mon, Jan 29 2024, 5:21 pm

I dont know which post your talking about?
sorry. Im not so good on imamother

amother

Mon, Jan 29 2024, 5:22 pm

oh now I understand. I see your post
\but your salmon....... Smile

amother

Salmon

Mon, Jan 29 2024, 5:27 pm

amother OP wrote:

oh now I understand. I see your post
\but your salmon....... Smile

Posting with my sn again. Lmk you saw it because I don’t want to keep my sn open for long under this. Thanks

Last edited by amother on Mon, Jan 29 2024, 5:33 pm; edited 1 time in total

amother

Mon, Jan 29 2024, 5:29 pm

Thx take it off.
saw it

SunShineSimcha613

Mon, Jan 29 2024, 5:37 pm

No experience with this personally, but a friend's child has it. Davening for a refuah shalayma for you son!

amother

Lemonlime

Mon, Jan 29 2024, 6:48 pm

My DC has in the brain. I met another person whose DC also has/had in the brain. They did surgery in Mayo Clinic in Arizona.

amother

Salmon

Mon, Jan 29 2024, 7:01 pm

amother Lemonlime wrote:

My DC has in the brain. I met another person whose DC also has/had in the brain. They did surgery in Mayo Clinic in Arizona.

Was your child’s embolized?