I didn't know what was wrong with me at first. My family doctor read my MRI report, called to ask for my neurologist (didn't have one at the time), and told my husband the lab would stay open late for us to pick up a copy of my scans and for us to head straight for the e.r--and to not do anything to jar my head. I read the radiologist's written report that was with the disc with the scans. The e.r. didn't explain anything about the AVM, and I googled it the next morning (e.r. sent me home at midnight). This all started on a Friday. I saw my neurosurgeon on Tuesday, and I don't really remember what he told me. I remember him explaining it clearly & drawing a picture, but I don't remember the words he used.
my son found out about his AVM after it ruptured. He was a healthy 8th grader who had went to his 8th grade party on a friday night came home went to bed and woke up feeling like his left side was asleep and fell out of bed. He called for me and when I got to his room I rolled him over and saw his face drooping,I understood at that time that he had a stroke. The ambulance took him to one hospital and they did a CT and found a 4x5 cm bleed on the right side of his brain. He was transported to minneapolis childrens hospital. By the time he reached the hospital he was unconsious and the neurosurgeons told me that he probably wont make it through the night, and if he does he will never walk again. Well that was in 2007, he spent 5 weeks in the hospital 2 rounds of stereotactic radiosurgery and many MRI and CT tests later he IS alive and IS walking and holding down a full time job. The avm is still not gone, and we are facing new seizures that are being caused by radiation necrosis of his brain which the doctor is going to help us with next week but just remember, as bad as it looks there is always hope. My son is my walking miricle keep the faith
The radiologist who made the scanner (asked for an unrelative event) did not understand what he saw. He came out of his office and said "do you know that you have something in your brain?" and went back in his office. then he said that it could be that I have a meningiom, but that he will be sure with an MRI. It was done one week later, and the radiologist said: you have an AVM... This did not seem to be interesting for the phsyician who asked the scanner, so I had to read by myself and find the places were it was possible to know more ...and know what to do. I went to 3 different hospitals. In every case, embolizations were preconised, followed by either surgery either radiotherapy. Because at this time there was no bleeding, I finally decided...to wait and see. Bleeding (a small one, fortunately) occured 4 months ago, and the treatment began last week.
Mine was discribed to me as a malformation in the brain with th network of arteries and vain, I was then informed of the risks and my treament options, My Stroke of insight by Jill Bolte Tayloe describes AVM as "an artery is directly connected to a vain with no buffering capillary bed inbetween"
After hearing my heartbeat in my head for 6 months, I went to the doctor. He said, no problem, leave it alone. I saw another doctor who sent me for a MRI/MRA and then to a intervention radiologist who interpreted the MRA and explained about the dural AVM. According to him, an easy procedure would get rid of it. The description of this procedure did not sound very easy to me. He explained about the catheter and the glue. There was no talk about possible side effects. I found out about those later on the internet.
I still have my AVM, I have not yet decided what to do, I am 73 years old.
I really didn't know what an AVM was and after it was explained it was still unclear what it is.
My Doctor didn't really go into any details and I found more out via the internet than what came from my Doctor.
As I see it, It's a mass of capillaries that are tangled and if you think of it like water pipes, the incoming water (the artery) is being by-passed by the AVM and draining out the drain pipe (vein) without the water going around the full system of pipes around the Brain.
Hi i was diagnosed in 2010 with a avm inside my spinal cord , i was shocked and yes scared of my out come especially when my neuro surgeon and his team explained to me what a avm is . A malformation of tangled blood vessels and arteries that can cause extreme paralysis and other severe problems ... i had surgery and was left paralysed waist down so it was a huge shock to me and my family and friends .. However on the positive side i have achieved things i would never have done before i.e wheelchair table tennis at a very competitive level ,also i did a swimathon 60 lengths just using my upper body . i would say to other avm sufferers stay strong and try new things i was scared at first but had to change i could go 1 way or the other lifes to short to waste so give it your best shot any 1 needing to chat contact me ■■■■■■■■■■■■■■■■■■■■■■■■■ Thankyou hope this helps ...steve parry U/K
I found out during a MRI for headaches I had been experiencing for about 5-6 months prior. The doctor was very informative, referred me to UVA doctors and I got a second opinion from a doctor that came to my area from the Cleveland Clinic. All said the same thing except the doc from UVA said I had 3 anerysyms associated with my AVM but that was denied by the doctor that actually did the angiogram. Funny how two opinions can vary. Anyway, I trust the doctor from the Cleveland Clinic after doing my own research on both.
The Cleveland Clinic doc compared it to indoor plumbing and on a VERY descriptive level. Made perfect sense. I'm not convinced my headaches are coming from the AVM b/c they are also similar headaches associated with chronic rhinosinusitis. Which I will get a CAT scan to determine this Friday. Never can be too careful!!
I will update once I know more. My AVM has not bled or had seizures related to the diagnosis. Just found it by accident.
Question #2. My hubby Sean is very reserved and not quite social so I was the one asking all the questions to his neurologist. The way he explained what an AVM was to me is to think of a traffic circle. Sean's blood vessels are all entangled like cars during traffic time when everyone is rushing home all at the same time. Imagine all the cars rushing towards the traffic circle trying to get through, well in Sean's blood vessels, all of the blood is rushing to that traffic circle and getting stuck in traffic. Everyone is getting anxious just like the blood is piling up in the his blood vessels just as the crossroads of that traffic circle. Sooner or later, just like a traffic jam, the blood is all stuck in that traffic circle like an AVM's blood not able to circulate and there is then blockage/bleed just as a crash would if more cars are rushing towards that same area. That is like an AVM, no where to release, so the blood is just forced to release just as a car pile up if there are no open roads in a traffic circle. Not until treatment such as gamma knife will the AVM find a way to release that tanglement, just like traffic will not clear until the access roads are freed up again. The dr. told me that because Sean was BORN with this AVM, it is congenital and he doesn't know any difference of the pressure in his brain because its all he's ever known. But with me not having AVM, I wouldn't be able to understand. Even if he were to take Sean's brain and put it in mine, the pressures would be too hard for me to handle and I would probably beg him to give me a pistol and end my life because I wouldn't be able to handle it at all. I was shocked when he told me this. Sean's carotid arteries were also found to be blocked during his embolization so the dr. is not even sure where or how his AVM is circulating now, but Sean is alive and kicking still. Hope this helps answer this question! :)