Ladies,
I think this thread is such a unique set of information, I’ve moved it to the AVM 101 category so other people might find it more easily. Too valuable to lose this information for other patients.
Very best wishes all,
Richard
Hi there, my daughter was diagnosed with an AVM on 4th Jan 18. We were referred for angiogram which happened last week and we are due to meet with the consultant on 20th March to go through all the results. However we saw on the angiogram notes that they are suspecting it’s a CPA AVM! We didn’t know what this was but have looked it up and are in complete shock by what we are reading! Our daughter is only 6 years old and we feel completely devastated this is happening! I don’t really know what I’m asking here but I’m just reaching out to see if anyone can shed any light on the horrible diagnosis for me! Thank you!
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I know these posts are old but I’ve just come across this group. The article posted here from Boston Children’s is actually about my son. He’s 15 now and was diagnosed at age 7. There is no direct treatment but his doctors in Boston are all wonderful. We are doing all we can to manage his symptoms which seem consistent to others in this group. He has not had any seizures or major bleeding but does have general weakness on his left side and episodes of migraines, exhaustion and complete loss of function on his left side for short periods of time, especially when stressed or anxious. I would welcome futher conversation if anyone is still active here.
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We’re active, Mom! I’m tagging moderator @DickD in case he can think of anyone else to tag into this conversation.
We’re glad that you found us, and we hope that you are too.
Seenie from ModSupport
My daughter has proliferative angiopathy.
She had a craniotomy at 4 months old for an avm. When she was 5 , at her annual mri the drs noticed a change. At the time her dr was dr Spetzler. He consulted with his peers and the response across the board was not to treat. We sent her imaging to NY, Boston, as well as a number of drs where we live- there was a total consensus.
In the meantime we continue to monitor her. She just turned 12. More recently she’s been experiencing weakness on the left side of her body, her word recall is declining, some minor drooping on her face. She’s irritable and highly sensitive. Each day is a blessing.
This summer we need to go for an MRI. I wonder how that’s gonna pan out with this whole covid 19 pandemic.
How are your children?
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