Hello to you all. I am 34 and just was diagnosed with a complicated occipital AVM with subsequent stroke. I spent 5 days in Jefferson Neuro Hospital where I was transferred from my home hospital of Lancaster General. I was told by one doctor to “just go on with my life” but I have a 70% chance of bleed over my lifetime because I am so young. We are going for a second opinion: Dr. Rosenwasser in a month. I have to beat this thing as I have a 6 week old daughter and 5 year old daughter. Anyone know any credible web sites to seek information?
Heather
I am currently being treated by Dr. Rosenwasser and I love him. I had four embolizations and radiation done in other hospital and Dr. Rosenwasser just did an embolization on me for the first time. I was the best one yet for me. I will be having several more with him along with more radiation. My AVM is located in the parietal occipital area. There are many websites you can find here on the site that are very informationa. Good luck with your appt with Dr. Rosenwasser I will be there on Sept 28th having my next embolization.
Hi Heather! I’m sure it is going to sound a little biased (and maybe it is) but really this IS the best website to get info. Lots of our members have been through similar situations as you, and as you can already see from Lee Ann below…you are going to find patients that have been to your docs and to your hospitals 
What better info than from someone who has actually been exactly where you are. There are also links all over the place to find more “technical” info. I’d suggest two things- Search & Search! Search the member tab for things like Jefferson, Rosenwasser, PA, etc. Then search the blog & forum tabs for things like resources, technical, definition, etc. All of those key words that would have posts with the info you need.
I bet you end up finding the info, or something/someone to point you to all the info you want.
Good luck!
Did anyone return to their work after being diagnosed with their AVM?
Hi Heather, I would have to agree with Shalon, u are at the best site u can find and as u see some else has already responded and going to the same doc. as u. Stay prayful and keep your head up we are all here to support and you can talk about anything u want to at this site. welcome to our home peace and blessing
Hi, again everyone is different with their avm, but as for me I was diagnosed in April spent a week in the hospital and no I havent returned to work since then, I have had my first embo. waiting on the second one. I was told the same thing about it bleeding again and I didnt want to take a chance on it doing it again at work waiting to get everything done.But my doc. also told me it wouldnt be a good idea to return to work because of what i do.
When they finally figured out that I had an AVM, my wife was pregnant with our daughter. It’s good for you to be aggressive in finding a solution to this thing. Always bring someone with you when you go to talk to the doctor and don’t be shy about asking questions. The stupid question is the one that I was too timid to ask. Keep looking for a doctor that you respect and don’t waste money on that one who said “just go on with your life”. By pushing hard on mine, they went from no idea on why I was having seizures to getting a crainotomy before my daughter was born. She was only a couple of months old when I went for this brand new thing called a gamma knife surgery. She is now 21 years old.
If you push hard and survive, I guarantee that your daughters will cause you many problems. When I get real upset at mine, I try to remember that I wasn’t supposed to be around her this long. And at 21, girls can be a real pain.
When they finally figured out that I had an AVM, my wife was pregnant with our daughter. It’s good for you to be aggressive in finding a solution to this thing. Always bring someone with you when you go to talk to the doctor and don’t be shy about asking questions. The stupid question is the one that I was too timid to ask. Keep looking for a doctor that you respect and don’t waste money on that one who said “just go on with your life”. By pushing hard on mine, they went from no idea on why I was having seizures to getting a crainotomy before my daughter was born. She was only a couple of months old when I went for this brand new thing called a gamma knife surgery. She is now 21 years old.
If you push hard and survive, I guarantee that your daughters will cause you many problems. When I get real upset at mine, I try to remember that I wasn’t supposed to be around her this long. And at 21, girls can be a real pain.
Good luck, Heather. Go with your gut feeling (beating this) and don’t take a doc’s "no’ for an acceptable answer. Your children need you now and later, so do what you need to so you can be here for them.