Angiogram/AVM Advice Needed - Mothering Forums

Forum Jump: 
 
Thread Tools
#1 of 6 Old 10-21-2008, 05:08 PM - Thread Starter
 
Virginia Mom's Avatar
 
Join Date: Feb 2006
Posts: 211
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
Hi, I had orginally posted this in health, but someone suggested I try special needs.........thought I'd try my luck in the toddlers area since we're talking about my 'toddler'........thanks in advance for any suggestions.

Hi Moms, my soon to be 4 year old is scheduled for a brain angiogram in about two weeks.......he's already been thru 4 other procedures with anesthesia so I'm not too worried about that........but I was hoping to hear from other moms whose little ones may have experienced the same thing........

Or if you have any feedback on DVMs or AVMs......(in the brain)......thanks.

 broc1.gif
Virginia Mom is offline  
#2 of 6 Old 08-12-2013, 10:19 AM
 
rachel776's Avatar
 
Join Date: Aug 2013
Posts: 3
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)

I was wondering if you ever got any answers and how things went with your son?  My daughter will be three in October and had a MRI last week that showed what they think is an AVM in the brain.  We are waiting for the appointment with the specialist next week and I have been trying to research as much as I can.  Would you mind sharing with me a little bit about your families experience?

 

Thank you!

 

Rachel

rachel776 is offline  
#3 of 6 Old 08-12-2013, 12:53 PM - Thread Starter
 
Virginia Mom's Avatar
 
Join Date: Feb 2006
Posts: 211
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)

Dear Rachel, you wrote :

I was wondering if you ever got any answers and how things went with your son?  My daughter will be three in October and had a MRI last week that showed what they think is an AVM in the brain.  We are waiting for the appointment with the specialist next week and I have been trying to research as much as I can.  Would you mind sharing with me a little bit about your families experience?

 

I'm happy to share......First, don't stress.......no matter what the final test results end up being, the more stressed out you are, the more your little one will pick up on it.

 

The doctor thinks it's an AVM......Make sure you have a copy of the radiology report and you are reading exactly what the doctor who viewed the scan wrote........."think" is a guess........they don't know

 

That's what happened with us.........3 hospitals, three doctors, 6 brain scans later we finally had an answer. So it's a lesson in mommy patience as best as you can manage

 

Okay, for starters, try to not use the abbreviations....like AVM....doctors have a bad habit of mixing up the letters (and so do we)......have them use the full words and you too smile.gif

 

My son has a DVA...developmental venous abnormality--------think of blood vessels that have major road congestion, but that's it.....

 

Now when I see the letters AVM I'm thinking it's the type where the vessels can just bleed for no reason, right?

 

From our experience.......only an angiogram can tell if it's an ??? abnormal vessel that can cause problems with bleeding....

What makes doctor "think" it's an AVM.......

 

Next......who is doing the tests...........we had to see a NeuroRadiologist and Nuerologist.......that specialize in Vascular Abnormalities of the Brain.. now we follow up with a Nuero and a NeuroSurgeon........(Our amazing Vascular Neuro has since moved to Texas.....Dr. Jordan)

 

What hospital are you going to? We went to two Children's Hospitals and they were awful...(although I must put in the disclaimer that this was almost 4 years ago and we were recently at Childrns in Philly and they were AWESOME...)...the angio was eventually done at Johns Hopkins......and that was super stressful

 

If time permits, and there is no apparent danger, get a second and third opinion!

 

Forgive me if I'm wandering all over this page........trying to write as much as possible before my pc freezes again.........

 

Hmmm, get duplicate and duplicate copies of the paper report and the CD scans......You'll need them for a second opinion....you won't get them back from other doctors when you go in for second and third opinions....

 

 

Okay, I'm going to stop writing bc I don't want to overload you (my kids are screaming and playing as I'm writing....my mind is so scattered right now ).....

 

Read thru my novel a few times......take some notes.......jot down some questions.........and PM or email me.......it's always good to talk to someone who has gone thru it before............

 

 

 


 broc1.gif
Virginia Mom is offline  
#4 of 6 Old 08-12-2013, 07:54 PM
 
rachel776's Avatar
 
Join Date: Aug 2013
Posts: 3
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
For some reason it will not let me PM you. Will you PM me and I will reply?
rachel776 is offline  
#5 of 6 Old 02-03-2014, 09:30 AM
 
amy8510's Avatar
 
Join Date: Feb 2014
Posts: 1
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
My son has a lip avm and waiting on angiogram! At chop in Philly but sending us to Boston for a second opinion! Anyone with feedback I would appreciate it! Super nervous
amy8510 is offline  
#6 of 6 Old 02-03-2014, 10:07 PM
 
rachel776's Avatar
 
Join Date: Aug 2013
Posts: 3
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
My daughter ended up not being an AVM. She did go through the angiogram though. I didn't like having her knocked out but otherwise it wasn't awful just stressful. I do have a cousin with an AVM that they didn't find until he was a teenager and he is in his 20s and doing well. I iwsh you the best of luck for your son and will keep your family in my prayers.
rachel776 is offline  
Reply

Quick Reply
Message:
Drag and Drop File Upload
Drag files here to attach!
Upload Progress: 0
Options

Register Now

In order to be able to post messages on the Mothering Forums forums, you must first register.
Please enter your desired user name, your email address and other required details in the form below.
User Name:
If you do not want to register, fill this field only and the name will be used as user name for your post.
Password
Please enter a password for your user account. Note that passwords are case-sensitive.
Password:
Confirm Password:
Email Address
Please enter a valid email address for yourself.
Email Address:

Log-in

Human Verification

In order to verify that you are a human and not a spam bot, please enter the answer into the following box below based on the instructions contained in the graphic.



User Tag List

Thread Tools
Show Printable Version Show Printable Version
Email this Page Email this Page


Forum Jump: 

Posting Rules  
You may post new threads
You may post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Trackbacks are On
Pingbacks are On
Refbacks are Off