First Time Seizure in 16 year old w/intracranial venous malformations - Vascular Birthmarks Foundation Forum
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  #1  
Old 05-06-2008, 02:10 AM
Seanette Seanette is offline
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Join Date: Aug 2003
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Unhappy First Time Seizure in 16 year old w/intracranial venous malformations

I wanted to know if anyone has experienced or has a child with new onset seizures? Alex has had 41 surgeries since birth and 5 last year alone. She currently sees Dr. B and Dr. Waner in NY. Alex had a slight hemorrage at birth but has had no recurrent bleeds or seizures (warned at birth). She's had minor learning disabilities but overall great health. We were warned at birth that she would probably have another hemorrage, stroke, seizures and even die. We've been blessed and thought we were out of danger being that she's now 16 and hasn't had any serious problems. Alex had her first onset seizure a little over a week ago. She had a MRI, MRA, MRV, CT and an EEG. The MRI, MRA, MRV and CT all show the same venous anomalies intracranially but no new changes. We live in OR and currently went to OHSU and met with Dr. Kao. Alex's EEG came back abnormal but that could be secondary to the seizure although Alex's venous anomalies predispostion her to having seizures. I'm really confused...and very worried. We were eating dinner having a great time when Alex started seizing. We thought she was having a stroke since that has always been a deep rooted fear. Dr. Kao in OR says we should wait for the second seizure (because no one knows how long or if she will have another one...although she's already at risk because of her venous anomalies within her brain). Dr. Molofsky in NY wants Alex put on Keppra as she's already at risk for another seizure. Because of the venous malformations within her brain she runs a risk of another bleed too. I don't know how to relax and not worry about her. The day of her seizure she went in for her permit but failed the test by one. Now she needs to wait 6 months seizure free before trying/driving. We are obviously concerned about her driving if she has no sensation before the seizure and no memory of having the seizure. We also worry about her walking on pavement alone or swimming. PLEASE I hope someone on the site has experienced something similiar. We purposely did not schedule surgeries for Alex this year so she could rest and enjoy life. Now we have additional worries/concerns to deal with. Please email or post if you have any additional information.

Thank you,
Seanette
rsmith@actionnet.net
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Old 06-08-2008, 04:41 PM
KristieinStMarysGA KristieinStMarysGA is offline
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Location: St Marys GA
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Sadly, I don't have any advice to offer you.

I have a VM too, but nearly as complicated as Alex's, if I were you I would use the "Ask an Expert" portion of the site and see what they say.

My doctor is Wayne Yakes from Swedish Medical Center in Englewood CO, maybe contact him. He is without a doubt the best (or one of!) in this field.


Kristie
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Old 06-10-2008, 08:20 PM
nickbar nickbar is offline
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Join Date: Aug 2003
Location: Pacific Northwest
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Hello,

I wish I could help with answers to your question. Dr. Konez is now located in Portland Oregon. It might be beneficial to have your daughter evaluated by him. Portland Providence Medical Center. Our office # 503- 731-2900 for scheduling. He is very helpful and I can email directly if needed. You can reach him thru the ask the expert section as well. If you have any trouble, please feel free to email me (remind me of what post you are referring to when you email me please )
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VBF is proud to add Dr. Orhan Konez as our expert Interventional Radiologist. Questions regarding reading and interpreting films and treating malformations with sclerotherapy or embollization can be sent to Dr. Orhan Konez.
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