Just Diagnosed, Very Worried!

Hi everyone,
I’m a 17 year old female who just got diagnosed with and AVM in my brain today. I experienced two migraines, one with aura one without this past summer, and then a grand mal in february. After my two MRI’s the past two days, I was informed by my neurologist today that I have AVM. I am extremely concerned about how this may effect the rest of my life. My neurologist mentioned no late nights, no parties, no drinking, etc, but will this be forever? My license got taken in february because of my seizure, but will I get it back? What are the chances of bleeding, risks of more seizures? Not sure if anyone who has been living with AVM for a while could let me know their experience. I have never heard about it until today and it seems pretty bad, and I am very worried.

Hi Becky,
I may not be the one with the AVM but my son had one. I’m sure you must be very worried and scared. It’s a scary thing to be told you have an AVM. As you read around this site you will see various outcomes. Just take them all with a grain of salt because each person has their own type of AVM. They are custom …as no two are exactly alike. It really depends where yours is located, how large, and the course of treatment your doctor is planning. As crazy as it sounds you are blessed to find out you have this now so you can have it taken care of. I really can’t give too much advice as I’m no doctor. I would recommend keeping a list not just for you but your whole family of questions and thoughts you may want to discuss with the doctor. Please know there are a great deal of people here who do know what you’re going through and will give you a great deal of support. Anytime you need to chat just drop by. We’ll be here.

Hi Becky,
Brava to you for immediately seeking to learn more about AVMs!! That is a reaction you should be very proud of, it is wise, it really is. AVMs are scary, and education and communication are excellent tools fro keeping stable, sane, grounded. First of all, know that you are reacting the best possible way - awesome!

I am going to write you personal page.

Hit me back,

Hi Becky,
I remember the feelings that first day like it was yesterday when in fact it was almost 7 years ago now, and I was terrified adn confused. My own AVM is no t treatable so it remains a huge part of my life and the decisions I make. Each one of us is different as is each AVM, our symptoms and how we deal with them. I have also noticed the information we are given by our neuro’s also varies so as Marla said read peoples stories, research it online, ask a million questions but in the end your experience just like your AVM are unique. Try not to let all you are told and all you read overwhelm you, you are lucky though when I was first diagnosed groups like this did not excist and I also ver incredibly alone and had no idea where to turn. You can turn to us if you need, this place id like a family filled with people who understand nad can help if you need them to.


Hi Becky,

I had my AVM removed 10 years ago when I was 20 and I feel great. I remember, I was devistated the day I found out I need to have brain surgery. To my surprise, it was completly painless and I was home and on my feet after 4 days. I actually went to Vegas 3 weeks after my surgery. You and I are one of the lucky ones who found out about the AVM sooner rather than later. My license got taken away, but they gave it back to me when I was put on Dilantin (anti-seizure medication). I started to take Dilantin from the day I was diagnosed until 6 months after my surgery. I think you are not supposed to drink as long as you are on medication. Otherwise, I’m 100% recovered and I can drink, party etc. as I wish. By the way, it’s not bad, it all depends on the location of your AVM. If your doctor recomends that you have brain surgery, then consider yourself lucky because that means your AVM is located somewhere where it’s safe for them to actually go in and take the AVM out. My surgeon (Neil Martin) at UCLA Medical Center was great.

Hi Becky at 17 I’m sure you are afraid everything will change. It will some but not like you think. I have seizures too. Once you are on meds you will be able to drive again,in my state after 3 months without a seizure you can drive again.I dont know of anyone here that ever heard of a avm before they got it. Now we have alot of friends that know just how we feel. You will get so much help here. I know I have , and if I can help you please let me know.

HI Becky, I just left a comment on your page. My son was diagnosed like you. He lost his licence. He had to be seizure free for 9 months which he was and we applied right away, (doctor has to do fill out forms) and it was reinstated right away. He is on Dilantin to prevent seizures so our pharmacist said that alcohol makes the Dilantin ineffective so there is higher risk of seizure if you drink while on it. Other than that, my son leads a pretty normal life now. He had Gamma Knife at Toronto Western Hospital so we are waiting for it to work. He wears a medic-alert necklace, carries a cell phone, etc. to keep him as safe as possible but we have ‘tryed’ to go on with ‘normal life’. He will go to university next September.
I feel so bad for you and your family getting this news because I remember how we felt when it was us. You will really need to work thru it and find out more about your particular AVM since they are all SO different and then what treatments might work for you. It all takes time but I know it is just so scary. Again, I feel the most important thing is what doctor and hospital you are treated at since there are some doctors who know more about AVM’s and you want the BEST care possible when they are working with your brain. Let me know if you have any more questions. Take care.

Hi Becky! Sorry to hear about your recent diagnosis. Yes, it is scary stuff and you’re having a lot of stuff thrown at you right now, so I’m not going to throw anything else in your direction right now. I will say, however, that you have found a good place to ask questions and look for support. Many of us on this site (myself included) have been through the same types of things that you are trying to work out right now. For what it is worth, I had an AVM in the left temporal lobe of my brain, had multiple angiograms, a craniotomy, a grand mal seizure, uncountable number of simple partial seizures/auras, and a loss of half of my vision and I am back to driving, working a full-time job, supporting a family and so on.

Hi Becky
I know you are dealing with a lot right now but you’ve found the right place to seek help and advice. Please ask anything that pops into your head someone here will have help and advice, take care.

Hello Becky,

Like yourself I have recently been diagnosed with an AVM, while going 22 years almost oblivious( horrible migraines in the same place , often). The last week has been packed with multiple doctor visits, tests and that of the like. I also cannot drive ( for 6 months and have been put on Dilantin, although it may not be the right med for me) Surgery is not an option because its so large. Definitely ask every question that comes to mind, keep a notebook and if you don’t feel like your doctor has your best interest in mind- get a second opinion. If you can keep your research to a minimum with personal stories and such it’s probably better for your own sanity! It’s definitely a very trying and stressful time, just know you’re already on the right track and you’ve got options. There are so many people here who have such different scenarios, it’s a good place to feed some positive vibes just keep an open mind!

Hey Becky, dont be worried, be positive, keep smiling and most importantly trust your instincts and what your body tells you. I had 4 years living with my avm and there was no way it was going to beat me. Keeping positive is the best medicine! Please feel free to mail me if theres any way i can help or any questions you may have.