I started having a headache over a month ago. It progressed to wierd stroke like symptoms & pain in my head. Loss of vision & slurred speech followed that. Ended up confused with lots of pain. Doctors say they think it is avm & i have a mri Monday. Doctors have put me on meds to control symptoms but they have only dulled them I am 30 have 3 kids & am getting married in august… just kinda looking for someone who have had same symptoms to give me an idea of what’s to come. Scared more than anything and can’t let that be seen by the kids.
Hi Mariah - Love your name by the way - I discovered my AVM after I came to - about 1 month after my bleed.
Thank you about my name. That’s crazy how you found out. I hear all these people talk about coma & it scares me more. I have had a talk with my 13 year old son about what to do if anything happens when he is here. But I am trying to down play this all in front of the boys so I don’t scare them too much.
Welcome to the site Mariah! We are so glad you found us. I know its hard but try not to be scared. This site is chock full of information as well as doctor recommendations from all over the country. Plus there are some 4200+ members here that are both awesome and here for you too. Don't hesitate to ask any questions (but its always good to talk to your doc) :) Oh, and to answer your question, I found mine when I got a little dizzy tilting my head back. My very observant PCP ordered an MRI and the rest was history. Delivered a baby the old fashioned way, lifted weights, played soccer, and never found it. Go figure. Hang in there Mariah, we got your back! :J
I had a bleed which produced stroke like symptoms, which included losing the ability to speak for a couple of minutes, went to hospital and they just told me to go home and rest. Found out about having an AVM about 6 months later because of the seizures that kept happening caused by the damage from the bleed on my brain
Thanks. It’s a comfort knowing I have somewhere to go where people understand. My fiance is very supportive & I know he is worried to but he just doesn’t understand really what it feels like to be going through this.
That’s funny because first time I ended up in er it was the exact same reasons and doctor said exact same things. I felt like they were blowing me off. He just kept saying I was fine even though I couldn’t feel or control the whole left side of my body. It took 3 er visits before a doctor took me seriously. I was starting to wonder if it was all in my head. I guess it is in a way but hey I’m not crazy & that’s a bonus.
I was eating lunch and I had a huge headache and felt dizzy, couldn't walk and started vomiting. Took by ambulance to hospital. CT scan indicated a bleed in cerebellum. This happened on 12/24/11. Had a craniotomy to remove the AVM on 3/23/12.
Hi Mariah,
I too had terrible headaches and I also had neck pain and confusion/memory problems and doctors told me that it was either stress, or they kept telling me it was migraines--which I knew it wasn't, or one said that I probably just had a bad breakup with my boyfriend or something.
It was really hard to know what to do when no one took my symptoms seriously. I went to yet another PCP recently and she suggested a brain MRI which showed an AVM--and that really explains everything!
I don't know what's going to happen with procedures and such, there are a lot of things happening at once with that, but knowing that I have a "real" condition does make it a lot easier to be taken seriously.
So, that's the good part--weirdly.
Hope it helps to know what's what.
Good luck!
gaahla
I had headaches, migraines and blurred vision for yrs...I finally couldnt take the headaches anymore so my doctor sent me for a mri on 2/14/11 my avm was discovered. Had two embo's and a craniotomy done on 3/21/12 .... 6 weeks post opt and im feeling better :)
It amazes me how many of the things you are all describing that is exactly what I am going through NOW....The nuerologist called me today and ha set my appointment for Monday an hour before my MRI. Not sure if that is a good thing or not. It kinda made me more nervous that they were in that big of a hurry to see me.
Hi Mariah. Sounds like you are in what I call the OMG…this cannot be happening to me phase. We will help you in any way we can. With 3 kids and a great fiancée…you have a lot to live for. BTW…I would be more concerned if you had told me that you were not scared. Everyone is at the beginning of their AVM journey. Feel free to check out my profile page!
Thanks Barbara the OMG phase is a great way to put it. I’m trying to be strong for everyone else. Guess that’s a mom thing. It’s nice to just be able to get on here & be able to say im scared & not worry about if I’m gonna scare anyone else. If that makes sense.
Hi Mariah! I also learned of my AVM after my AVM ruptured in February, 2011 and was just told that I am AVM-FREE yesterday :-)) AMEN!!!. I will tell you that being scared is so very normal and you will find a way to shield the fear you are feeling from your children -- it's not easy and does not come over night so please be patient with yourself and have faith that you will persevere thru this bump that was put on your journey thru life. In addition, please try to feel good about the significant advacements our medical professionals have made over the years with treating AVMs and hope that you find Peace after reading thru the many success stories page on this site. I truly believe that we are the beneficiaries of the miracles that our medical professionals are making in treating people with AVMs! You have a wonderful life ahead of you with your 3 kids and future husband who will be the ones that will help you persevere thru this!!!
Please do remember to be kind and patient with yourself and have faith in knowing that this is a treatable condition!
HUGS to you!
Michele
Thank you so much Michele. Patience is not a strong point of mine but guess this whole ordeal will be a learning lesson for me. 
Congrats on being AVM free!!
I found my AVF when in bled, which caused a hemoragic stroke. I don’t reccommend going that route as I had to learn to speak again. I had headaches my whole life but they AVF never showed up on the MRI.
Yeah I am pretty sure I would like to skip that. I have headaches since I was 12 & they have always just said they are just that. All this new stuff is what finally made a doctor decide this wasn’t just headaches. My MRI is Monday & as bad as it sounds I just hope they find it & we can decide what’s next. What scares me the most is if they don’t & decide its just headaches. Because even with all the meds they have me on I am still having symptoms & I felt like no one was listening for so long & was happy when someone did that I am not sure what my next step would be. I can hardly function now let alone if I had to start the hunt for another doctor that will listen again. If it doesn’t show on MRI I may just lose it & admit defeat. Thanks so much for sharing with me.
Let’s just pray it is something less severe than an AVM. If nothing shows up on the MRI they may do either an angiogram or something with contrast dye. My AVF showed up on the angiogram. They start with the MRI because it is a less invasive procedure. Don’t give up yet. I’m sure the not knowing is the worst part. I’ll pray for you on Monday. Let me know the outcome.
Thank you. I will be sure to post anything I find out.
Hi Mariah :) I found mine by accident. I was always into sports my whole life so it was quite a shock to find out I had a ticking time bomb in my head. I always suffered from migraines and had sensitivity to light and noise. But I was also in a few car accidents (not my fault, lol). But the most recent, I had a school bus sideswipe me, caused neck and back pain. So while searching for several years for the cause of my chronic pain, we found the AVM this past Dec. 2011. The operated via gamma in Feb 2012. My results, however, have not been positive. And I wish I would have thought a little longer and harder about it all. It's just been rough. :) But I'm hanging in there. Stay positive! Stay strong!