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  #1  
Old 01-21-2005, 04:52 AM
kiddiemom3
 
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Default Daughter 2 1/2 year old- avm on brain

Hi everyone,

I just came back from my daughters neurologist. My daughter has a pws on her left forehead which extends to the middle of her head. She had an mri taken to determine if she had sws, however, instead I'm told they found avm in parietal lobe on or in (I'm not sure) her brain.

The neurologist is a little baffled, and is currently discussing it with a neurosurgeon. They are trying to determine if this is related to sws or not, and what steps to take in treating it.

If anyone knows anything about such a case or similar please let me know. If anyone has or has had an avm on the brain please share with me the doctor(s) you were using, and also if you did anything (surgery) or are just monitoring it.

Thank You
kiddiemom3
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  #2  
Old 01-21-2005, 05:12 AM
nickbar nickbar is offline
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Join Date: Aug 2003
Location: Pacific Northwest
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Default Re: Daughter 2 1/2 year old- avm on brain

Dr.David M. Frim
Title/Specializing In Neurological Surgery Pediatric Neurological Surgery
Center for Advanced Medicine
5758 S. Maryland Avenue
Chicago, IL 60637
Work Phone (773) 702-2475

Fax (773) 702-5234
E-mail dfrim@peds.bsd.uchicago.edu
http://www.uchospitals.edu/physicians/david-frim.php
AVM treatment on the brain!!!!!!!! not birthmarks in general

Corinne
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  #3  
Old 01-21-2005, 01:31 PM
eprmo eprmo is offline
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Default Re: Daughter 2 1/2 year old- avm on brain

That doctor mentioned above is an excellent reference and Ipersonally e-mailed you another specialist who also specializes in vm's of the brain. Let me know if I can help you in anyway. I know the one in St. Louis

Elissa
psyelectro@aol.com
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  #4  
Old 01-21-2005, 02:38 PM
kiddiemom3
 
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Default Re: Daughter 2 1/2 year old- avm on brain

Elissa,

Where would I be able to find out more info about the doctor you e-mailed to me. The google search engine didn't find anything under his name.

Thank you
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  #5  
Old 01-21-2005, 02:39 PM
kiddiemom3
 
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Default Re: Daughter 2 1/2 year old- avm on brain

Corrine,

Thank you for the information.
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  #6  
Old 01-21-2005, 04:10 PM
nickbar nickbar is offline
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Default Re: Daughter 2 1/2 year old- avm on brain

Oh Elissa, I was thinking this was the doctor you told me about?

Corinne
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  #7  
Old 01-21-2005, 04:35 PM
eprmo eprmo is offline
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Default Re: Daughter 2 1/2 year old- avm on brain

He is at Children's Hospital in St. Louis,, He can be reached at :
Dr. Matt Smythe
314-454-4454
St. Louis Children's Hospital

Let me know, if I can help anymore. He is a very kind man and has done surgical procedures on children with SWS...and AVM's...

Elissa
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  #8  
Old 01-21-2005, 04:37 PM
eprmo eprmo is offline
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Default Re: Daughter 2 1/2 year old- avm on brain

also here is his e-mail...if you write him,,he will respond..put in the address...VBF..he'll read it

Dr. Matt Smythe

smythm@nsurg.wustl.edu

Elissa
psyelectro@aol.com
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  #9  
Old 01-21-2005, 05:21 PM
hankbartenbach hankbartenbach is offline
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Default Re: Daughter 2 1/2 year old- avm on brain

Hi,

Is avm is A Venous Malformations? Just curious.

Kiddiemom3,

I have SWS/PWS on the brain/head, and on my face. It is possible to have SWS and not have seizures, KT, or Glaucoma. I do not have any of these three. I also know people that have all four. I am not sure if I have avm or not, I guess I have never asked. After Dr. Waner finishs my face, we are going to take a look at my PWS on my head.

I would like to find out what the doctor says about your daughter.

Hank
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  #10  
Old 01-22-2005, 01:12 AM
Jin9084
 
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Default Re: Daughter 2 1/2 year old- avm on brain

kiddiemom3,
Hi. I have read that in some rare cases that avm on the brain with facial pws is a symptom of SWS. I do know of another mom who's son was diagnosed with AVM on the brain and SWS. I am not sure if she is on this site or not. I wish that I had more information for you.
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