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Chelsea’s Story

Hi my name is Chelsea. When I was 11 years old my life changed for ever. I was diagnosed with AVM of the brain. My mother didn’t believe me at first when I would have stroke like symptoms on my right side as well as speech issues. She thought I was just being a normal child trying to just get attention. Finally she took me too my pediatrician, which than referred us to a neurologist. Test were ran MRI and EEG results came back I have AVM. Me and my parents were clueless as to what this was. At the age of about 12 I had an embolization done. They blocked 30% of the avm. The doctor who done this 7 hour surgery was foreign so unfortunately when my worried parents would ask questions he got offend. No parent is going to feel comfortable with there 12 year old in the hands of a doctor who feels offend just by them asking simple questions as any concerned parent would do. I lost some of my hair from the radiation from the surgery, can you imagine being at that age and already dealing with the hole puberty thing and then going through this. It was rough but my parents helped me out by home schooling me for a bit. I then went to another doctor in Memphis where he looked over my case and took it in front of a board of doctors and they agrees they wouldn’t of touched it, that it was too large. Ready for the interesting part, he studied under the professor that did my embolization. So with that over with I tried every kind of seizures meds out there and have major mood swings from them now. So I just lived my life as normally as possible medicine free with little seizures and migraines.

I am now 22 years old have two beautiful kids and a husband. With my first pregnancy I started having more seizures. They delivered her a few weeks shy of full term. I had a bad seizure after the c-section so I had to be transferred. I was fine I survived that. Then with my second one I was fine. Just recently I started having more seizures and headaches so I decided to get a new neurologist because the one I had all these years pretty much told me I wasn’t having seizures and this and that. Recent MRI shows the AVM has gotten bigger. Unfortunately here in Arkansas the neurosurgeon do not deal with AVM like this. So I am off to UAMS in little rock. I am still alive and living each day! My journey is still going to continue! To everyone out there with AVM I use to be really embarrassed about it and still kind of am. But its nothing to be embarrassed about! It’s apart of us and we have to fight it just like any other person with disability.

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