Angiogram

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Angiogram

Postby Billie » Sun Mar 04, 2018 5:52 pm

My son had a bleed and was diagnosed with a CA one month ago. He has an appointment with neurosurgeon on March 9th. My question at this point is: are angiograms contraindicated? Watched a video from a woman who said she wouldn’t have had one if she’d been informed by her membership with the alliance at the time. I’m sorry if this is not the appropriate place for questions-I’m having trouble learning to navigate the site and am very anxious to get my question out there! Thank you! Billie
Billie
 
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Location: Oregon coast

Re: Angiogram

Postby Elizabeth » Mon Mar 05, 2018 1:47 pm

Welcome Billie,
I'm sorry your son has been dx. I wouldn't say that angiograms are contraindicated... Maybe not that useful though depending on the situation. Most of the time the best imaging is an MRI. They can also do an MRA and/or MRV which will give them basically the same information as an angiogram without the risk. I would probably be most concerned that the doctors might not know what they're doing if they think they need an angiogram. I had one too...but probably didn't need it...I saw a lot of doctors that didn't know what they were doing at the beginning. After I got in touch with some informed MDS...they told me I didn't need the angiogram. My angiomas was really big, and at first they weren't sure if it was an avm or a cavernous angiomas, so that's why they gave me the angiogram. Look for some experts in your area...that's the only way I got any real answers.
Diagnosed September '09 with one CM centered in the right insular cortex/basal ganglia. Saw many, many doctors and had surgery 12/10/10 with Dr. Spetzler. I am thrilled to have this bleeding thing out of my head even though I suffered a stroke during surgery. Have had/ continue to make an amazing recovery. http://www.thankfulforeveryday.blogspot.com
Elizabeth
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Re: Angiogram

Postby Michelle2000 » Tue Mar 06, 2018 4:52 am

Welcome,

I'm sorry CCM has entered your family, but glad you found us.

My son had an angiogram the day or two before his surgery to be sure there wasn't a DVA or any other anomaly connected to it. That was 8 years ago.

Best wishes,

Michelle
17 year old son with brainstem CM resected in March 2010, CM at C2-C3,
CCM2 mutation; DH & BIL with multiples in brain and spine; (MIL - deceased spine & brain)
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Re: Angiogram

Postby Billie » Wed Mar 07, 2018 2:00 am

Thank you so much for your helpful replies. I am gleaning that the angiogram May show if there’s an atery/vein malformation as well. It’s so difficult to trust. Hopefully we will get some things sorted out on Friday although after searching his profile I have no reason to think this neurosurgeon has any experience with this condition, certainly no fault of his own. Hopefully he will refer us to one who does. I have taken notice of specialists mentioned in posts here and on Facebook and have calls in for consultation information. We will find a way to go anywhere we need to.
Wishing you all the best...❤️
Billie
 
Posts: 3
Joined: Sun Mar 04, 2018 7:52 am
Location: Oregon coast


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