Just Diagnosed

Hello, I am 21 years old and am currently attending college. Over the weekend i fell out of bed and hit my head pretty hard on my night stand. I cracked my skull a little bit and had some bleeding in my brain. Upon my MRI i was initially told that the bleeding had happened in a small area and had stopped. Later a neurosurgeon visited me and told me that i had an enlarged vein in my brain called a Arteriovenous malformation.I didn't receive much more information than that. Upon my initial research immediately became frightened. I am wondering how common this disorder is and exactly how dangerous it is. The hospital that i was at set up an appointment with a neurologist 3 months from now. Should i see one sooner or am i good waiting until then? thanks for your help.

I'm glad you started this discussion. You'll get lots of responses, I'm sure. First, welcome to the group. You've come to the perfect place to get information and support from others who know what you are dealing with. To answer some of your questions: It's estimated that AVMs affect 4% of the population, so they are not common. It makes us "special". If I were you, I would start researching neurosurgeons in your area. You need someone that is experienced in treating AVMs, that's very important. If it were me, I wouldn't want to wait 3 months to see a neurologist who will probably ultimately refer you to a neurosurgeon anyway. Let us know what other questions you have.

Hey there Joe,

I agree with everything Trish had to offer. Make sure you don't wait three months like she said. Plus we have a link to questions that you can ask your doctor at
http://www.avmsurvivors.org/forum/topics/questions-for-my-neurosurgeon. Good luck and if I haven't said it already welcome! :J

Joe, I'm glad you found this site. My husband is the AVM survivor. Not sure where your appt is, but my husband went to University of VA, which is not that far from you. I definitly would not wait 3 months. Perhaps you could contact someone else, or get your primary care doctor to do that for you, sometimes they have more pull.
This site has a wealth of info and people willing to offer any assistance possible.

Hi Joe. Have you spoken with your PCP or GP, he/she should reccomend how to proceed from here as well as give you refferals. And why have you chosen to see a Neurologist as opposed to a Neurosurgeon or Neuroradiologist? I wish all the best to you.

hey joe,
I agree with everyone i wouldnt wait.the sooner the better...also do as much research as u can and get alot of opinions just in case u decide to treat...remember we r all here for u..Godbless u

Can you get copies of your MRI scans? When my AVM was found last April, my family doctor did some research & found me a neurosurgeon. My husband emailed some of the MRI scans to his office & he saw me within days.

Like the others, I would suggest locating a neurosurgeon & setting up an appointment as soon as you can--if nothing else it will help ease your mind, esp. at this point in the semester.

Hi JoeS. I understand your concerns about the length of time before getting in to see a neurologist. The nature of AVM's are that you are born with them. They do not just develop. Some people go their entire lives and never know they even have one. They are usually discovered under other circumstances, like yours. My daughters actually ruptured and bled into her brain. Hers ws diagnosed a few days after she suffered a hemmoraghic stroke, by angiogram. Angiograms are the "gold standard" for diagnosis of a brain AVM. Make certain that your family & close friends know all the stroke symptoms, just in case it does bleed. If it does, you will need immediate medical attention. You will probably want to see a neurosurgeon rather than a neurologist. My daughter is now 18. We have been through gamma knife brain surgery, as her AVM is on her brain stem. 7 months later, she suffered another stroke, from a ruptured anuerysm in the AVM site. She was 15 when her AVM first ruptured. I have watched my daughter literally learn to walk now, 3 times. She's a survivor, and will graduate on time from high school next month. Hang in there, it's a lengthy battle sometimes.If you live in an area that has a large university with a hospital, you can usually find neurosurgeons there.

I would find out more details from the MRI reading - like the approximate size of your AVM, and where it is located.

I had a CT angiogram, after having my initial MRI, and the CT angiogram was able to show more clearly the draining veins and arteries involved in my case. My diagnosis was an incidental finding as well & very recent, and I still haven't made a decision on what treatment plan I'll follow. The neurosurgeon in my case did tell me that I didn't have to rush to my decision, and I'm planning on getting other medical opinions in the future.

There are some AVM survivors who choose to not have their AVMs obliterated and end up doing well.

Welcome Joe,

Welcome. The common theme in most of the conversation on this site is to find the best physician in your area that specializes in this disease. Start now. Even if it turns out to be a wait and see, you've establish care and created a support for yourself until you truely understand what you have or have not. Your primary can expetite appointments with a neuro and meanwhile keep copies any MRI/CT on you and bring to your appointment if necessary. Here is a list of the Top Neuro per US News and many of our members found their physician listed. Link:


Knowledge is the key. First confirm what you have by the best then begin there. We are here to support you.

Dave/Warren Oregon

I agree with the others, do not wait. Also, another common theme is to get copies of the MRI and all future work. Keep it stored in a good place, you will need this information for the rest of your life. Bring a notebook and keep all information written down. Can you tell I was burned by a doctor who didn't see the AVM on my first MRI, then "accidentally lost" the MRI?

You might also want to give the general area that you are in to get people in that area to recommend doctors. It always help to get a doctor with a good recommendation. Then, you won't get an appointment 3 months from now.

Once my neurosurgeon figured out that I had an AVM, I had my surgery within three months. That's probably why I'm alive over 25 years later.

It is alright if you're a little scared about this one. This is a real problem. However, this group of people will do their best to help you. So, hang tough.

Welcome to the group. If i were you i would try to get in earlier that appointment. AVMs are not common. one thing that is important to remember is that every AVM is different, you might be ok waiting 3 months but to me its better to be safe than sorry.
I am 20 and also attending college depending on your course of treatment it is still possible to continue with your schooling, but it isn't always easy

Every case is different man but everybody seems to find AVM's by accident. Some people live their whole lives not even knowing until their old and have a stroke. At your age this is the best time to find out as operations etc will be better and higher chance of coming out of it all good....welcome anyway buddy & keep us posted. God bless

Welcome. I can't add anything more than what has already been said. I did wait three months for further care after my bleed at the recommendation of my surgeon. They couldn't see well enough to make a definite diagnosis until the blood had subsided. The bleeding had stopped and I was ok for the time being. Everyone is different. Keep us posted.

Joe...Like you, I was diagnosed having my AVM by accident. First, don't wait any time...find the best neurosurgen you can find (I found mine online by searching for the best neurosurgens that treat AVM's). One of the top teams in the Country are at Johns Hopkins. Going to see a neurologist takes away important time..they are just going to send you to a neurosurgen that specializes in AVM's anyways.

Knowing you are still in college..the insurance their provide isn't enough. Does your parents still have you on their insurance?

Please keep us informed. You have found a very helpful group on this Network who have been through where you are right now. Stay Positive, Joe!

Welcome, Joe!
I echo everyone else & would encourage you to get copies of your medical records & MRI's & research the best of the best of neurosurgeons treating AVM's, then get as many opinions as you need to feel comfortable with your direction of care. Generally the best places to search are @ leading medical teaching universities.
Best wishes.