Hello AVM Survivors Network

As a new member Just wanted to say hello and introduce myself to the group. My name is Alex, i am 37 and live in Waynesboro, Pa. On 4/1/2011 while undergoing an MRI for sudden hearing loss in my left ear a 3.5cm x 3.5cm x 4cm AVM was discovered in the right frontal lobe of my brain. My family docter immediatly contacted Johns Hopkins Univ. where i was placed under the care of Dr Judy Huang. I had no symptoms from my AVM. It was only discovered because of the MRI for my hearing loss. I had my first cerebral angiogram on 4/25/11 which produced very good detailed images of the AVM. Unfortunatly I suffered a seziure the following Monday, May 2nd. After a trip to the ER and a cat scan it was determined that there was no bleed. I went home and the next day went to Hopkins for an already scheduled meeting with Dr. Huang. At that meeting i was informed of the treatment plan devised by the Hopkins team of Neurosurgeons. It will consist of several embolizations and ultimatly a craniotomy to remove the AVM. First embolization is scheduled for June 1st. I completed pre surgical bloodwork, EKG, and physical on 4/13/11 and everything looks good. My family dr. has been very proactive, inquisitive, and expedient in getting me refered to Hopkins. I am her 1st AVM patient and she is very interested in following my progress; which I find very refreshing. Dr. Huang and the Neurological Dept. at Hopkins are very experienced and the ulimate professionals. I am blessed to live close to a hospital like John Hopkins and be able to receive some of the best care in the world. I am happy to have found this site and am looking forward to meeting others like me and sharing this stressful experience. Thanks for having me:)

welcome i myself just joined yesterday. my radiology oncologist wants me to go to john hopkins as well for a 2nd opinion on my deeply located avm. i havent had grandmal seizures as i used to have but i do have the petit mal ones occasionally. i understand this is a scary process and i am glad you got diagnosed quickly. hope your hearing improves. my sight is affected by the avm. i will be praying for your speedy recovery. i will have to give john hopkins a call myself so that i can possibly get in to be treated by them quickly when i move back to the area in June.

thx patrice. I read ur story and hope u have some better results with ur treatment after ur move. It cant hurt to call Hopkins:) I will be praying for u as well. Dont think my hearing is coming back. 75% loss in left ear but my right ear is still working well. lol.

Welcome to our little family Alex and Patrice, I know you will get a lot of answers and support on this site, they are a great bunch of people and we all share one thing, a rare medical condition.

Stay strong and take care


Hello Alex, welcome to this wonderful site! Great news that you are getting treated quickly. As I am in Australia, I don't know any of the medical teams there but I have heard (on this site) excellent reports of Johns Hopkins.

All the very best for 1st June, my thoughts and prayers are with you. Lesley.

Welcome Alex. Hopkins is a wonderful hospital for sure. My mother is being treated for her 3rd bout of cancer there and all of the doctors I’ve met there seem very confident and competent. Good luck with your treatments and keep us posted on your progress.

Thx 4 the welcome from down under DM, and Lesley:) Also thx trish 4 the welcome. Ur mom sounds like a real fighter!

I am a nurse, but in no way professionally educated about AVM’s let me say for the record. Your AVM size surprised me. It seems rather large. Did the doctors happen to say that this was particulary large as the AVM’s go? Do they expect a full restoration of your functional hearing once the treatment is complete? I am so pleased that you are at Hopkins and getting top-notch care. My son was just diagnosed today and I don’t even know the size of his. Will pray for you. :slight_smile:

Hi Alex,

I'm sorry you've 'had' to join us, but am happy you've found the site.

It's great that the AVM has been discovered without any ruptures occurring. Has your hearing loss improved any? If not, hopefully that will come with treatment.

I wish you all the best with your embos and upcoming resection. Keep us posted on how you're doing and how your treatments go.