Hi Everyone! So glad to have found this site. Our son was just recently diagnosed with a small frontal lobe AVM. It was found incidentally - no symptoms - and he is asymptomatic. Seeing Dr Spiegel and Dr Tarrasiwicz out of Hartford CT. Anyone hear of them? Dr T is a pediatric neurosurgeon and Dr S is an interventional radiologist.
Has anyone made the decision to leave the AVM alone in their child? We speak with the Dr's again soon for a game plan. What kinds of questions should we ask?
We've never heard of an AVM before this - I will continue to search the site but any information would be most helpful. Thanks!
Hello LMD and welcome to the site. Below are a couple of groups you may want to join:
You can also search using the "search box" on the upper right hand side of the main page. Let us know if you have any questions about the site.
Way to go Debra!
Welcome to the site LMD. The people here are great, and the mods outstanding. I tried to do a search to find the link(s) Debra posted--and failed. I knew someone would jump in with it......
LMD, one important thing to know is that avms are more likely to recur in children than they are in adults. It can be a shock to parents to discover after their child has undergone brain surgery that the avm has returned. On the other hand, children can and do have ruptures from avms.
LMD my son was 13 when his ruptured during wrestling practice. In my opinion if the doctors feel it should be removed now do it. The call I got that evening still sends chills through me. My sons was November 2012 and I so thankful that I have him here today. Be pro active on this!
Well done Debra and thanks. LMD welcome to our site. I'll just add that it's always a good idea to seek out second or even third opinions. Make sure you feel comfortable with and trust your team of doctors. Best wishes to you and your son.
No But I Am In The Hartford Area...My son has a rare form AVM in his brain it was discovered when he was 2 months old...I had just turned 17 at the time they never expected him to live past 2 years old... He had a bleed when he was 6 months old that caused him to have 7 Grand Maul Seizures & 7 strokes in a row (which is when they told me he will never live past 2 he is now going on 23 with 2 children :) ) I found this group last year & after sealing with this for the past 21 years alone I strongly stress utilize the support...Prayers To you and your family
Hello there ! I am a 72 yr old woman in Birmingham , Alabama who accidentally found she had an AVM in the occipital part of the brain 8 years ago. I have never had a symptom . And I declined having gamma knife surgery eight years ago. Due to the 3 mm size of the AVM and it's location gamma knife was the only option. I am most satisfied I elected not to do it. I am told my age is in my favor---no symptoms ever in this long life.
Of course I have no sggestions or advice in regard to a child with an AVM.
But I am passing this along to you as a hopeful momento of being positive.
I live in Birmingham , Alabama, where my local neurosurgeon, Dr. Winfield Fisher, is at UAB/Kirklin Clinic, He gave me the option of gamma knife or do nothing. My choice.
I wish you the very best. I rarely visit this site. So in the event you respond my reply might not be timely.
Take good care, Sally
Thank you all for your kind words and thoughts. As you know, the wait and not knowing what to do is very frustrating. We see the medical team on Wednesday to find out what their game plan is. Think positive thoughts...
We decided to get a 2nd opinion after speaking with someone we know, and found out their son also had an AVM. His had ruptured when he was young. After much discussion and meeting with the team of doctors they used, we are going ahead with surgery at NYP. The surgeons point hit home, is better to take care of it while he is young and healthy than to wait and have it rupture, and then you're in for a whole different world of problems. My fear is he is somewhere alone and it ruptures and he cant get to a phone or nobody can get to him quick enough. The fact that it was found incidentally proves that things happen for a reason.
My son was 35 when he learned he had a avm. It is very difficult for us to accept. I can tell you this, there are a lot of doctors who just want to do surgery even if they are inexperienced. The first three surgeons my son saw wanted to do embolizations, radio surgery and or a craniotomy. No two were the same in how they wanted to treat this avm which is located on the left parietal lobe. After reading more on here, we sent his records to Barrow Institute and to Dr. Duke Sampson, both are well known for avm surgeries. He also went to Johns Hopkins for another opinion. All three of these surgeons who also conferred with other specialists in avm surgery said to leave this avm alone. It is located near the motor center and surgery could likely cause serious damage. Yes, it could bleed tomorrow, and that is very scary, but I shudder to think what those first surgeons wanted to do to my son. If I were you, I would get opinions from surgeons who do many many of the avm surgeries. I guess my son had an avm all during his childhood and I did not know it. This is a very strange, unusual condition and few people do many of these surgeries. Do not just allow the first doctor you see to do surgery. God bless you. I hope you make the right decision.
Another thought, a lot depends on the location of this avm. No two are a like. That is why advice from someone else who had one is not that useful. The brain is amazingly complex! You really can't go by someone else's story of how they are glad they had the surgery.
Lea, I totally agree with everything you have said here! And I appreciate your honesty. ANd of course your wisdom. I believe in 2nd opinions on everything that's of major importance. Everything. After laborious research for information about AVM's, the 2nd opinion I received that also advised I have a great chance of my AVM never causing a problem being as it hasn't these last 72 years allowed me to finalize my decision to not choose gamma knife surgery. It's a gamble, yes. But so would the gamma knife have been , regardless to whatever small degree it may have been. This way , for example, I am totally healthy, totally independent, can drive, see, cook, play cards, and dance, etc. etc. etc. etc. ! Who knows if I would've lost any of those abilties as a result of gamma knife. We humans forget that the practice of medicine is a science, not an absolute. And anything can happen....both good and bad. I can only speak for myself, my advanced age being the key to my decision, all the details of which are first initially reported here. If I had a child at any age less than adulthood I can not say what I would choose, other than to exhaust seeking all resources and information from the finest experts I could find. My heart goes out to any parent with such a huge emotional and practical responsibility. Sally