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-   -   Daughter, age 7, has AVM in brain. Help! (http://birthmark.org/board/showthread.php?t=686)

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.


Elissa
psyelectro@aol.com

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
and
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: http://groups.msn.com/vascularbirthm..._whatsnew.msnw

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


Corinne


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!

Elissa
psyelectro@aol.com

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

Elissa
psyelectro@aol.com

Lise 10-07-2004 12:37 PM

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

Here are two Web sites that could be helpful:

http://www.westga.edu/~wmaples/aneurysm.html

http://www.nwscape.com/cgi-bin/nwsca...bsite?action=P

Take good care.

Lise in Montreal

bremcmahan0107 10-19-2014 07:15 AM

I'm a survivor of an avm
 
My name is Brenda Sue Mahan. I'm 49 Yeard old I live a fulling life raising 2 beautiful teenage girls. I read your help and my heart went out to you and your daughter. For as long as I can remember I had incapacitating migraines. My first being around the same age as your daughter. I would have blinding pain in my head, couldn't tolerate noise or any light. Medicine for headaches wouldn't relieve my pain. I would literally have to throw up to ease the pain and make myself be still and not cry because that only made the systems worsen. Back then my mom, my grandma, great grandma and my uncle all suffered migraine headaches so I never got to go to hospital. Migraines are typically hereditary. BUT WHAT WE HAVE IS NOT HEREDITY ITS CALLED AN AVM.
I went in and out of different emergency rooms with my migraine headaches because that's I and the e/r doctor thought they were. I Was 21 years old before I was diagnosed with my VAN. I had a very bad headache where I kept throwing up but instead of feeling a little better I kept getting.g weaker and hurting. I went to MEDICAL CITY DALLAS HOSPITAL 7777 FOREST ON DALLAS RD. The e/r doctor found my AVM by.examining my eyes. I had too much optic PRESSURE. My AVM was located on my top right handside of my head. It was operational and recommended that I have the AVM operated and removed.
Because if the doctors haven't explained the pain your daughter us going thru is extremely excruciating the extra arteries which make up the birth mark are hemorrhaging. Which.means she bleeding inside her head. When she starts her womanly periods the pain she has now will be more frequent and incapacitating. I'm not trying to scare you.but give you s a better understanding of what she's going thru. and she's a very brave girl. Please understand the surgeon I had was Dr. Grey At MEDICAL CITY Dallas Hospital. His a great.surgeon, a wonderful person and a caring doctor. He removed all my AVM. I had to.do physical therapy For a number of months because I couldn't walk that good after surgery. Because of were my AVM was located i had a paralysis of my left leg. But after a few months old

bremcmahan0107 10-19-2014 07:36 AM

I'm a survivor of an avm
 
After a few months of therapy I could walk normal and I lI've a normal life. I been married 25 years and have 3 beautiful girls. One Is in college studying to be a police officer. My Second daughter is 17 an a senior in high school she's , played basketball since she was 8'and she's going go Tulsa University on scholarship. My last baby is 16 a junior and she adownplays basket, cross country, and track she keeps a gpa of 3.8. So your daughter with your llove devotion patience and prayer she'll be alright. I have migraines still but they are different from the pain I use to have but they are treatable and not as intense. So take hope I believe that you had an angel use me to help you. Please don't think I'm crazy Im not bDave didn't even know this site existed, never been into this site and not sure even how I came to be in this site and your the first thing I saw. I will pray for you and your daughter but I know in my heart and soul your daughters guardian angel sent me to you to tell you my story because she needs that surgery and she'll be alright. If you don't think I'm nuts and you or your daughter or any family member needs someone who had lived and survived this you can call me (405)887-2276. God bless and will be praying.


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