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mom2KandK 05-13-2004 06:09 PM

Daughter, age 7, has AVM in brain. Help!
My daughter, Krischelle has been recently diagnosed with an AVM in her occipital lobe in the deep right side of her brain. She is a beutiful, active child and is very involved with the All-Star Cheerleading squad in out city.
A couple of months ago she started being very tired and weak all of the time. She would come straight home from school and go to bed. She started having double vision, migraine headaches and then on March 6th she fell to the floor with her 1st seizure.
Krischelle was put on Tegratol 2X a day but after the cat scan and EEG coming back normal, the doctor told me I just needed to get her eyes examined. I knew that something was just not right, but with the EEG and cat scan being normal, I did not know what else to do.
Krischelle was admitted into the hospital a week later with constant vomiting. No medication gave her any relief and she lost 4.5 lbs in one week. They then finally did a MRI at the request of myself and the ER doctor.
The MRI showed the AVM and when the doctor told me I had never even heard of an AVM. Of course I immediately did the one thing I shouldn't have. I started researching the internet and read all kinds of horror stories. We have been to a Neurologist and a Pediatric Neurosurgeon and the consensus is to remove the AVM. With her being so young, her risks of the AVM hemmorhaging grow greater every year. I am standing on my faith in God but I am still so scared I am going to make the wrong decision. I am so ready for any helpful information anyone can give on AVM's in the brain and also any encouraging stories. I have so many questions and fears that I need resolved but I don't know where to turn....................................

eprmo 05-28-2004 04:39 PM

Re:Daughter, age 7, has AVM in brain. Help!
I don't know where you live, but there is a surgeon here in St. Louis performing surgical procedures on the brain especially on AVM's....with a new procedure. I hear he is GREAT!!!!!!!!!!!

Please contact me if you are intereted in getting more info.


nickbar 05-29-2004 01:42 AM

Re:Daughter, age 7, has AVM in brain. Help!
Elissa is right. There are a few doctors in this world that know how to treat this... seek opinions from the top docs.

The doctor in St. Louis Elissa speaks of in St. Louis
Dr. Waner (he is the top doc in Vascular Anomalies and is often very open to consulting with other physicians).

You are not alone. We are here and if you would like to join a wonderful support group. Elissa and I both belong to:

Good luck. You have come to the right place for information and support.


eprmo 05-29-2004 02:37 AM

Re:Daughter, age 7, has AVM in brain. Help!
Dr Waner is a top doctor, but, that is not the doctor I was referring too, the doctor is name Dr. Smythe. He is located in St. Louis at Children's Hospital. Please let me know if you need more information!


gbenigno 10-07-2004 12:06 AM

Re:Daughter, age 7, has AVM in brain. Help!
We have just received an AVM diagnosis for our 10 year old daughter. I am on the net, searching for all I can find. I just started a new job which has me 3 hours away from home... My husband is holding down the fort. I can't stop crying. What ever happened with your daughter? What decision did you make. Any information you can share would be helpful

eprmo 10-07-2004 01:13 AM

Re:Daughter, age 7, has AVM in brain. Help!
I don't know where you live,,but, I can reccomend surgeons who operate on them..One in Chicago, and one in St. louis..

contact me if you want more information


Lise 10-07-2004 12:37 PM

Re:Daughter, age 7, has AVM in brain. Help!

Here are two Web sites that could be helpful:

Take good care.

Lise in Montreal

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