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Angiogram/AVM Advice Needed

post #1 of 6
Thread Starter 
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.
post #2 of 6

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

post #3 of 6
Thread Starter 

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............

 

 

 

post #4 of 6
For some reason it will not let me PM you. Will you PM me and I will reply?
post #5 of 6
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
post #6 of 6
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.
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