Question about AVM

I am new to the group and I have been trying to get as much info about AVM as I can. My question is about the history of AVM. I can’t find any info about who identified it, who has made research gains, who is doing solid dependable research right now. Where did you find your information about all this when you were first diagnosed?
The only way to can beat it is to know what we are fighting.

Hello Ms Platten,

Wellcome aboard, since 04’ I wanted to learn more brain functions, In 03’ I underwent a new procedure for a ruptured aneurysm for 5 yrs. Finally, finished the study, for far new procedure was successful. Up untill last yr., I had a lot of questions about all the functions involved in being normal; physical and mental.
Check out www.biausa.org, most states have local offices, they have been helpful in providing support groups and information. I highly recommend Jeanne Anderson, she is the information and referral manager for the Brain Injury of Arizona, www.biaaz.org, Tel. #'s 888-■■■■■■■■/602-■■■■■■■■, she was very, not only helpfull, but very nice. Dr. Spetzler, neuro sergent, many people around the country as well as other countries proforms brain surgeries( head the Barrow Neurological Institute), Madelon Peterson,clinical research, ■■■■■■■■■■■■■■■■■■■■■■■■, 602-■■■■■■■■.
The need to research all brain activlty before and after a surgery is highly needed. I believe it so much that I donated my brain to the Harvard Brain Tissue Resource Center.
Goodluck and have a happy day!

I searched all my nursing books, professors, and the internet. It took several doctors and my vascular doctor told me he had no one in his practice ever diagnosed. I don’t think theres alot out there other than the treatments available but I also think its extremely individualized depending on location and type. Some are genetic some are developed. They are rare. My original neuro did an eeg as I had horrific headaches and it did “show” or at least “diminished blood flow” to the occipital region…howver she left it at that… My primary found it as I had a pulsating “thing” you could feel on the back of my head and the swishing (bruit) sound in my ears… Since embos thank God it is gone.You are right the only way to beat the is to know them. Its great you want to help. How did yo ufirst hear about them? Mare

Mare,
What do you mean about hearing the bruit swishing sound. I know what a bruit is, and I have heard that people could hear it, but where do you hear it? what does it sound like? Thank you for looking for me!

Mare said:

I searched all my nursing books, professors, and the internet. It took several doctors and my vascular doctor told me he had no one in his practice ever diagnosed. I don’t think theres alot out there other than the treatments available but I also think its extremely individualized depending on location and type. Some are genetic some are developed. They are rare. My original neuro did an eeg as I had horrific headaches and it did “show” or at least “diminished blood flow” to the occipital region…howver she left it at that… My primary found it as I had a pulsating “thing” you could feel on the back of my head and the swishing (bruit) sound in my ears… Since embos thank God it is gone.You are right the only way to beat the is to know them. Its great you want to help. How did yo ufirst hear about them? Mare

Thanks! You were at least on the right track. I see that Dandy did a lot of research on arteriovenous aneurysms. I was able to find some information on him.
Thank you for your reply and for sharing your story.

Irene C said:

I don’t know who discovered AVMs, but I had a bleed in 1959 and craniotomy. I am alive. I have deficits, yes, but I have lived with them. I do know that Johns Hopkins had a neuro guy named Walter Dandy who did much early work on children and brains. I believe he is the reason I am still here. Not directly, of course, but my neurosurgeon, now long gone, must have known about him. Search for Walter Dandy, Pneumoencephalography or Johns Hopkins early neurosurgery. Read about this amazing man. We all have him to thank for his research and his surgical techniques. I thank him for discovering the Pneumoencephalogram, but I will never forget the pain and fear I endured during it. It is called a “barbaric” procedure, but it led the way to modern imaging done now. Also, the Dandy Walker Syndrome bears his name.

When I mention the bruit sound, its like a swishing noise with a heartbeat; I don’t think you have children but if you ever heard a pregnant woman’s belly with teh transducer on top you can hear swooshing and a heart beat…(that’s how I describe it) How is your report going? Update me please! xoxo Mare

Mare said:

When I mention the bruit sound, its like a swishing noise with a heartbeat; I don’t think you have children but if you ever heard a pregnant woman’s belly with teh transducer on top you can hear swooshing and a heart beat…(that’s how I describe it) How is your report going? Update me please! xoxo Mare

I had a large AVM on my left ear and the surrounding area on my head. I had a loud bruit sound for years. It sounds a little like water being forced through a pipe that’s too small --rythmnically–with a heartbeat sound too–only mine sounded faster than my heartbeat. It almost (?) drove me crazy. I had embolization and surgery in 2007 and just found out in September that the AVM has come back or was never really gone–all the way around my half of an ear that is left and even in the parotid glad in front of my ear. Not the news I was hoping for . FYI the CTA tests I had done in Iowa where I lived showed no sign of AVM recurrence but I had sent pictures to my surgeon out of state and he had me come to his hospital and have a CTA which showed definite AVM recurrence. I guess to detect some AVMs it takes special software that some imaging place don’t have.

Kimberly Buehrer said:

Mare said:
When I mention the bruit sound, its like a swishing noise with a heartbeat; I don’t think you have children but if you ever heard a pregnant woman’s belly with teh transducer on top you can hear swooshing and a heart beat…(that’s how I describe it) How is your report going? Update me please! xoxo Mare

Wow that is so disappointing. I hope all goes well with that.
I can’t imagine having that whooshing sound all the time. I wouldn’t doubt that it would drive you crazy.
Keep us updated on the new/re-AVM

Kimberly Buehrer said:

I had a large AVM on my left ear and the surrounding area on my head. I had a loud bruit sound for years. It sounds a little like water being forced through a pipe that’s too small --rythmnically–with a heartbeat sound too–only mine sounded faster than my heartbeat. It almost (?) drove me crazy. I had embolization and surgery in 2007 and just found out in September that the AVM has come back or was never really gone–all the way around my half of an ear that is left and even in the parotid glad in front of my ear. Not the news I was hoping for . FYI the CTA tests I had done in Iowa where I lived showed no sign of AVM recurrence but I had sent pictures to my surgeon out of state and he had me come to his hospital and have a CTA which showed definite AVM recurrence. I guess to detect some AVMs it takes special software that some imaging place don’t have.

Kimberly Buehrer said:
Mare said:
When I mention the bruit sound, its like a swishing noise with a heartbeat; I don’t think you have children but if you ever heard a pregnant woman’s belly with teh transducer on top you can hear swooshing and a heart beat…(that’s how I describe it) How is your report going? Update me please! xoxo Mare

Kathleen

Any researched I have done is on the internet and talking with doctors. I was diagnosed at eleven and there was no treatment available for me then. I was always considered inoperable until 5-6 years ago and only treated because of major changes with the AVM. I have undergone embolizations and gamma knifes. It is not obliterated yet but I knew my changes when I started. It has helped some side effects and is allowing me to live more of a normal life. There is research going on all the time so I never give up hope. It is clear alot more research is needed and because of this I want to donate my brain.