My story

Hi everyone my name is Eileen I’m 32 years old I live in Philadelphia,PA I’m new here.For a few years I had a funny metal like taste in my mouth I didn’t know what it was it gone as fast as it occured after I would get a major headache.I had no health insurance so I let it go.I got married Aug of 2003 life was GREAT.April 29,2004 (the worst day of my life) I was in work and I got that metal taste in my mouth but this time it was different more intense.I was dizzy I felt like I was gonna go down.I went outside for some air and the next thing I remember was an EMT trying to wake me up.I had a seizure.I went to the ER where they did a CT scan and I was told I have an AVM and the hospital I was at didn’t deal with AVM’s.I was asked where I wanted to go.My husbands friend went to Dr Rosenwasser at Jefferson Hospital in Philadelphia thats who I wanted to go to.My husbands friend shouldn’t be alive today and Dr Rosenwasser saved his life.I was trasnsfered to Jeff that evening and met with Dr Rosenwasser as soon as I had a room he told me and my family that I need emergency brain surgery in the morning.I felt like the rug was ripped right from under me.They did an angeogram in the AM & decided to wait to do the 1st embo.I had my first embolization Aug 5,2004 and another one in Jan 2005.July of 2005 I had gamma knife radiation.I’m going on my 10th angeogram just waiting for them to set up a date.The last angeo I had some complications my artery had a spasm but they weren’t sure if it caused dissection in my artery so I was on blood thinners for a few months.The last MRA showed just a spasm no dissection YAY no more blood thinners.You can’t see the vein in my MRI anymore so angeogram here I come.I just hope I don’t have another spasm.Did this happen to anyone else??? If so since the artery had a spasm one time does that mean I’m more prone for it to happen again?? I have never been scared of an angeo til now.I hope the vein is closed because I’m ready to move on with my life.Also if they see the AVM still active am I gonna need another round of Gamma knife?? I’m so glad I found this web site I don’t feel like I’m the only one anymore.Its so hard because I look like a normal healthy 32 year old and some people just don’t understand.I’m very blessed with an AMAZING husband,family and coworkers.Thank You everybody for listening and I hope some of you can help me with the few questions I have.Enjoy your day everyone we are all truley blessed to have gotten up this morning and are able to stop and smell the roses…I thank God every day that I am alive;)

Welcome to the site! You did a nice job explaining your situation.

I have not read here about an artery spasm / dissection before, so I'm not sure what it is or how it might affect you. Maybe someone else here will respond.

Best wishes,

Ron, KS

Hi Eileen, Welcome to the site. I've had many angio's too but, I never had that problem.

I do believe, if anyone else here has had this experience, they will reply to your blog. It may take a few days but, they will be helpfull.

Here's an idea for you too.... Maybe someone on our sister site, "Brain Aneurysms", may have had this experience. I think its worth looking into. There are alot of good peolpe there, too. I wish you well, my friend

Thank You Ron and Ben for your replies!!! Ron when I heard dissection all I thought was oh crap my artery is ripped open…LOL No it just means a scratch which can bleed and cause a blood clot which is why they had me on blood thinners.After an MRA a month or 2 later it showed no scar tissue (Thank God) so it was just a spasm.I’m just scared it may happen again.Ben I’m gonna try the sister site brain aneurysms and see if I can find out any info ther Thanks again…

Wow! Your story is amazing to me. Thank you, by the way, for welcoming me to the site. My situation is a little different as my husband didn’t even know he had an AVM when it ruptured. His chances of survival were slim. He underwent an emergency craniotomy for complete evacuation. The neurosurgeon “did not expect a good outcome”. I had just had coffee with him an hour and a half before! Anyway he survived the surgery but then went into cardiac arrest immediately afterward. He’s doing well, but is just not the same person. I miss him. Our daughter put it very well when she said she misses him so much yet his body is still here. We’ve been married 26 years and I want to learn how to help him without getting frustrated. It’s hard. Looking forward to chatting with you again. Take care.