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  #1  
Old 04-02-2005, 08:09 AM
Scout
 
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Default Venous Angioma

My son, age 22, has KT.* A very mild case consisting of a slight left-sided hemihypertrophy with small flat hemangiomas that come and then just fade away.* However when he wanted to go into the Army, he went for ct scan of his body and an mri of his brain to disprove internal hemangiomas, avms, and lymphatic involvement. After a few mri's, he ended up having a cerebral angiogram. What we found out, was that he had a venous angioma in his left brain.* The doctor says it is no big deal, but when I look at the film the doggone blood vessel is as wide open as a dime.*

I'll never forget the first doctor who told me that I should be glad that my son had KT instead of hemihypertrophy, because KT is nothing. Well I know better than that now. Of course I also know that my son has been greatly blessed so far.* But the thing is, after hearing the one doctor, how do I trust this one now? IS a Venous Angioma no big deal?

Scout
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  #2  
Old 04-02-2005, 05:06 PM
hankbartenbach hankbartenbach is offline
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Join Date: Oct 2002
Location: Nebraska
Posts: 538
Default Re: Venous Angioma

Hi Scout,

First of all Welcome to the site.

I am 22 with PWS/SWS (Port Wine Stain and Sturge Weber Syndrome).
I also have avm in the brain that is linked to my eyes.

I personally have not deltwith Venous Angioma. Someone on her knows something on it I am sure.

Your son does not have SWS? The reason I ask is because I KT is a condition related to SWS, just like PWS, seizures, and glacuma.

As far as the doctors are conserned, you need to find a doctor that know what they are doing. What State do you live in? There are allot of doctors under the resource section on the front page. Plus, we have other doctors that are good and people on here can give you good reports on them. I would suggest looking for a Neurologist .

If your son or yourself ever want to talk privitly my email is in my profile. Or we can talk on the group if you want more feed back. There are allot of parents on this group, I think they will help give you confedence with the doctors.

If you have any other questions we are here for you.

Talk to you soon.

Hank
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  #3  
Old 04-02-2005, 06:26 PM
nickbar nickbar is offline
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Join Date: Aug 2003
Location: Pacific Northwest
Posts: 1,078
Default Re: Venous Angioma

I will have more info for you in a short time. I am checking the info your wrote to my notes.

Corinne
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  #4  
Old 04-03-2005, 04:23 AM
nickbar nickbar is offline
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Default Re: Venous Angioma

I would encourage you to send the mri information to dr. Berensein in NYC. His contact info is on the physician's list on this website.

Corinne
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