Just lost my brother to a ruptured AVM

My brother had an undetected AVM rupture 08-23-09. He faught hard but he was removed from life support 08-29-09. I saw my Dr today and he said all family members need to have an MRI. I have had an MRI in the past which didn’t show any AVMs. My question is…can an MRI miss an AVM? I have had terrible headaches my entire life and started to have seizures 5 yrs ago. Do my children need MRIs also?

Missing my bro,

Rachel

I’m so sorry for your loss. I have read that AVMs are not hereditary, but I would follow your doctor’s orders obviously. Get your MRI to see what the cause of the seizures is. Good luck and again, my thoughts are with your family during this difficult time.

Rachel- I am so sorry for your loss. Words aren’t enough, I know.

There is a good link at the American Stroke Association that attempts to answer your questions about detection.

You can cut & paste this link into your browser:
http://www.strokeassociation.org/presenter.jhtml?identifier=3067293

What kind of doctor did you see? I would highly recommend that you see an experienced neurologist not just your primary care physician.

Rachel,

First of all, I’m sorry for the loss of your brother so suddenly. May you find peace in time.

As to your questions, I think it would be difficult for an MRI to miss an AVM. If it were a contrast MRI (where they inject dye into your bloodstream), the AVM shows up very plainly, at least in my wife’s MRIs and CT scans.

We were told when my wife’s AVM showed up, there were two kinds, one of which could be hereditary and one could not. I don’t recall the names, but hers was the non-kind, so our kids were not tested.

My son developed seizures in middle school, but they were not related to an AVM. Many things can trigger seizures, and I suppose headaches as well.

I would recommend asking your DR these questions and see what his response is.

Hope this helps.
Ron, KS

Hi Rachel.

Sorry to hear about your brother. This must be a very difficult time for your family.

I’m surprised to hear your doctor say that all family members need to have an MRI. It is very uncommon for AVM’s to have a hereditary link. And these are normally associated with syndromes that have AVM components, not AVM’s themselves. Do they think your family has one of these syndromes???

I suppose it would be something that could be missed on an MRI. Specially if they weren’t looking for it or it was really small. Anything is possible and I’m no doctor. But it seems unlikely if you had MRI and they were specifically looking for something wrong with your brain, that they would have missed it. Hard to say…

Hang in there.

Rachel,
I’m so sorry for the loss of your brother. I wish you and your family the gift of whatever peace you can find in this difficult time.

I have heard that there are 2 types of AVMs… congenital and familial. If there are multiple lesions, it’s more likely that they are familial. So perhaps that’s what your doctor saw in your brother’s tests. I think it’s worth asking why the doctor recommends testing your family. Because that answer will give you a sense of direction for your family.

Again, I am very sorry for your loss.

I do not know the answer to your question, but I wanted to offer sincere condolences for the passing of your brother.

Rachel, I’m so sorry for the loss of your brother.

Like Brian, I suggest seeing a neurologist who has experience with AVMs. If you’re not sure how to find one, just ask, and people on this site will help you. An AVM-experienced doctor can help you sort out the issues, and you may have greater peace of mind about the way he/she interprets any test results. Also, you can probably request copies of the old MRI images for the doctor to review before deciding whether you need another test.

Please keep us informed about what you learn and decide.

I’m wishing you peace in a difficult time.

Hi Rachel,

I am very sorry that the world has lost another loving soul to an AVM.

Make sure if they do test your family that they use the dye (contrast). They missed mine 10 years before it ruptured and I almost died. I you are having headaches and siezures I would say that at least you need to have one.
I will pray for you and your family in this very trying time and please let us know how you are and we are all here for you and your family to lean on any time.

Rachel honey I am so sorry about your brother. I can empathize and wish we could find a way to make AVM a household name to the genral publc. It is so out of the realm of known disorders that when I tell anyone about my son Ryans new found AVM they look at me with six heads. Then I have to explain it to them and frankly they look even more mortified. I am living in the moment wiht Ryan he is 26 and a law student about to graduate. I worry all day about how he is doing. He goes to school in Texas so he is far fomr me I am in NY. I wil do everthing in my power to get him the medical help he needs. We just got him covered under insurance w/ no preexist clause I fought the fight of my life for full coverage. In addition, August 1, 2009 my mother passed away and then 3 weeks later Ryan had his first seizure ever. Thast is when he was diagnosed. I cerytainloy get what you are experiencing at the loss of a loved one family is pricelless. Stay close recognize that at every moment your brother is with you as my mother is with me. I feel her prescence she is in me . She watches over Ryan I see it I just know. Pease find a way to live your life we have no guarentees and each day is a new opportunity to live and help others through hardships we may never experience. When I live that way I find that at every corner or bad turn I have there is an angel that is sent to me to assist me at that moment . Open your eyes and heart and you to will see this. I talk to my mom as if she was in the room with me. Please be kind to yourself. Know that there is loving people out there . They and the greater power we cannot see will guide you .

With all of my heart and much understanding,
Rana Ryans Mom

Hi Rana,

Don’t want to divert the direction of this thread, but I do want to let you (and others) know that HELP is available for “Students with Disabilities” (for lack of a better phrase). Our Son had epilepsy, not associated with an AVM, which first presented in Middle School. While he did not need an IEP, which I think stands for Individual Education Plan, that route was available to him if he needed it.

His seizures were controlled by medicine until his sophomore year at the 2008 NATIONAL BASKETBALL CHAMPIONS college (Rock Chalk Jayhawk, go KU). Sorry, sidetracked… When his seizures recurred, he and we were concerned that at a large school, if he had a seizure while he was taking a test, he might stand up and walk out, or be so zoned out, which is what his seizures presented as, there was no way he could complete and pass any test. Walking out of a test usually meant a ZERO. His recovery time was sometimes a few hours.

So Allen went to the Students with Disabilities office. WOW, were they great! First, they got him a get out of jail free card, so if he had a seizure before or during a test, all he had to do was let the instructor know, he could leave, and make it up later. He was also offered more testing time if he needed it.

Additionally, he was able to get FREE tutoring for classes he needed it in. PLUS, he had the FREE assistance of a notetaker! The SWD office hired experienced students to be these assistants, so they would go to his classes with him, take notes for him, and then help him study the notes. Did I mention it was FREE?

To my knowledge there was no stigma attached to it, and I’m sure his classmates had no clue he was getting the extra help.

Our children with issues, no matter what age, need all the help we can get them. With my wife being a retired teacher, I’ve heard that side where the school’s money is tight, and if you don’t ask for the right help or encourage the right administrator, your child might not get the help he/she deserves. I’ll give you a real example: If a teacher suspects your child needs glasses, they can’t say to you “Hey, Johnny needs glasses I think.” Cuz in this state, that means that if a teacher recommends it, the SCHOOL is responsible to pay for it. Silly, right? So you have teachers talking all around the issue, such as “Have you had Johnny’s eyes tested?” “Do you think Johnny sees ok?” A parent has to listen between the lines to what the teacher is really meaning: GO GET HIS EYES CHECKED.

Another phrase that is GREAT to use with teachers and support staff (and with Doctors you see): “IF THIS WERE YOUR CHILD, WHAT WOULD YOU RECOMMEND?” That generally gets to the heart of the matter and should free them up to respond with an answer that YOU might want to do.

So I would encourage any of us who have children with challenges, do everything you can to get them all the educational help you can. Those who don’t have an educational background are often not familiar with what is out there for assistance. I would encourage everyone to talk first with the teacher and other specialty teachers. Make sure they are doing all they can for your child. Of course, that only works through high school level. Many schools have an omsbudsman, who will assist you through the school’s paperwork/meetings/staffings/testings/placement/etc.

I purposely made this more encompassing, so if one of the moderators (sorry, I ain’t that smart in this) can copy my post and put it under a new heading of “Getting educational assistance for your child”, I would appreciate it.

Best wishes, to all of us,
Ron, KS

Thank you for all of your support and kind words. Tomorrow I face a new obstacle; returning to work. I work on a bone marrow transplant unit with very ill patients. I am worried about seeing the grief and sorrow in their eyes (and families).

As far as the MRI goes, I am going to get my films from a neurologist I saw a couple years ago and find a specialist that is willing to review them. I am also going to ask him if my children or my brother’s twin boys need screening too.

Rachel

You are wise to be aware of your mental state. You have dealt with a LOT, and your work environment could get you down more. Please make sure you have a minister, counselor, or bartender (just kidding) that can help you work through all of these issues.

I know–I suffered so badly from depression and anxiety in 05, I was a basket case. I had no clue how low I had sunk. It took a good counselor several month just to get me to see in how bad of mental shape I was.

Be kind to yourself, and hang out here.

Ron, KS

I can’t even imagine the pain you are going through with the loss of your dear brother. I can only hope the memories you two shared will be a comfort and ease your pain. Also perhaps you should consider talking to someone to get you through this difficult time, they can help and assure you that what you are feeling/thinking is part of the healing process. For several months after my husbands AVM bursting/surgery I thought I was going nuts, and tried to deal with everything myself, that is not a very good way to deal with it.
Marie

I will be thinking of you today as you return to work! I’m sure you will be going through many emotions today. We have a dear friend whose cancer just returned and the hospital has been working diligently with the bone marrow registry to find a match. They just received good news on 8 possible matches – one of the eight very good with 7 or 8 matching items (I’m sure you know what that means).

Whereas I know you see the difficulty and sadness many families are going through at this time, remember there are matches and people have either been cured or go into remission due to the transplants. I hope some of these successes will also help ease your pain and know that you are doing work that can bring so much happiness to someone’s life.

Please keep us informed on what you find out from your neurologist on the testing, as I too was told from my husband’s neuro that AVM’s are rarely hereditary.

Rachel Longoria said:

Thank you for all of your support and kind words. Tomorrow I face a new obstacle; returning to work. I work on a bone marrow transplant unit with very ill patients. I am worried about seeing the grief and sorrow in their eyes (and families).

As far as the MRI goes, I am going to get my films from a neurologist I saw a couple years ago and find a specialist that is willing to review them. I am also going to ask him if my children or my brother’s twin boys need screening too.

Rachel

I am deeply sorry for your loss. My neurosurgeon told me at the 3-month post-surgery follow-up that AVMs are congenital (born with it) and UNLIKE aneurysms, they are NOT genetic nor run in families. My sister wanted to get checked anyway, and he said that if she did to get an MRA not just an MRI if she wanted to do it for her ‘peace of mind’ only. Mayo clinic has excellent info on AVMs which are written for ‘real people’ to understand at their website http://www.mayoclinic.org/arteriovenous-malformation/

With migraines and seizures, I really do find that it’s with anything important, always get a second opinion from someone who specializes in the type of neurological issue involved and go to a top place. 2nd opinions or even 3rd opinions can make a huge difference sometimes.

I hope good memories give you some peace during this time.

Rachel,
I am so sorry for the loss of your brother. I was diagnosed with an AVM in Dec 08. I’m being treated for it and will have radiation this Thursday. I have three children and my Doctor told me that it is not hereditary and I do not need to have them checked. You have me wondering though… I hope you get some peace of mind and do get checked, it certainly can’t hurt and again I’m very sorry to hear about your brother. It would be nice if the world was more aware of AVM’s. I had never heard of one until my diagnosis.

Rachel

Sorry for your lost, know where you’re coming from, lost my Mom, Aunt and cousin by an AVM, Oh almost forgot, me almost, came out of a comma. Does this run in the family? Whether, it does or not, I insisted that all my kids have MRI, sometimes it was not easy getting the Ins. to help pay for them. I, my self have had many MRI’s, all types of screening, 5 yr. study for a new surgery procedure.
It’s been 6 yrs. still not fully recovered, the AvM cuase alot the damage—didn’t catched it on time, SO, it’s very important to check it out before it’s too late. Be thankfull that you can still work, I, cannot, not only cause of Physical disability, but Mental problems. But not all is loss, recently I came across a way to work negative ways in life by mine self, EFT-Emotional Freedom Techique, applied corectly it will help you control work situtions. As an example, it’s not normal, in my opionion for a grown man to have a fear of darkness and falling, thru the application of these techiques, I overcame this fears, theres tons of other problems, I need to work on, Oh almost forgot, it’s free! God bless you.

Well, I have ordered copies of my MRIs I had done out of state 2 years ago. The girl on the phone said it looked like I did have an MRA at the same time. I hope this is true. She wasn’t the “sharpest crayon in the box” but I hope she was correct. Now the waiting for the disk to arrive.

Thank you for your kind thoughts!

Rachel

Rachael and all,

As AVM peoples (and we didn’t know this going in), we should ALWAYS ask for a copy of the scans, MRIs, Blood Tests, Lab Tests, etc that we are given for OUR OWN FILES. And keep a journal of who, what, when and where. You’ll be amazed how often you refer to it.

We found in our journey that one DR would refer you to another, and when you went to see the 2nd one, he’d say “Well, your records aren’t here yet.” Duh, what a wasted effort. Early on, we started asking for copies of all tests and reports. Early on, we carried the large 24x36 inch scans, whether on a plane or via car, so that the next DR would have them available.

I was amazed how many times the DRs, rather than did through the files, would just read our copy, and make a copy of it. As long we got ours back, we were fine.

Now that most scans are digital, it costs nothing to get a copy. Early on, we sometimes had to pay $50-100 for our own copy of scans.

Remember, the one that has the MOST interest in you getting better is YOU.

Hope this helps.
Ron