I personally didnt have any till the day i collapsed at work and had an epileptic fit, what were everyone elses symptoms?
Thankyou so much for all the welcome comments, I've never found this site before but feel so good to talk to people who know what i'm talking about. My AVM was dealt with in 1997 but there's not a day goes past that i dont think about it. It still affects me hugely.
I spare a thought to those and families of those who havent been so lucky as me xxx
My son did not have any symptoms at all. Not even headaches. He still doesn't get headaches. He had a grand mal seizure like you did.
I really hope that your AVM hasn't grown back....because my son had Gamma as well and I don't want to think that it might grow back after Gamma. All the best to you, Jennifer.
I didn’t have any symptoms at all from the avm. It was discovered by ‘accident’ in 1991 and It didn’t start to give me any problems till 2007. Thats when I finally agreed to gamma knife.
my avm was removed in 1982. i was 22years old. a few times i would vomit and be so sick could not lift my head off the ground, my avm ruptured in 1978 but healed, i think about it every day. i have a scar going from ear to ear.
thank you.
My symptoms where severe sharp pains in my head on a daily basis, I have suffered migrane head head aches usually 6-7 a month, and burning sensations in my head. All of this has gone on for 5 years. I was finally diagnosed with my AVM in DEc. 2010 When they where ruling out a brain tumor. And ran across it my accident.
I had migraines and ground pounding headaches the likes of which I hope never to have again after this is all over. We thought they were from allergies when i was 14 and I just got used to the pain until they discovered the AVM in 2006 when I was 19 after a brawl. 2v8 and brain dmg all across the left but not on the entire right side where the AVM is, LUCKY. I didn’t have symptoms aside from migraines until I started working harder seeing how far I could push myself. I pushed right into seizures at work, numbness of my left arm and leg, tremors and inability to read similiar to dyslexia. nothing got me more than the vertigo though, that’s what made me go for help.
I also didn’t have any symptoms. My AVM was discovered because my dentist sent me for an MRI because I mentioned that I had head pain the day after having a cleaning. I believe it was found just by accident.
My son (15 yr) didn’t have any symptoms, not even an occassional headache. One morning, he was sitting at his computer writing an English Paper when he had what we thought was a stroke. The left side of his face was paralyzed, he was unable to speak and his lips were blue. He wrote on a paper, “Call 911, stroke!” and handed it to my husband. Later, at the hospital they did a CT scan, Functional MRI, MRI with the WADA and an angiogram and diagnosed him with a Grade IV in his right frontal lobe. Since then, it has been quite an experience! He played 9 years of ice hockey, baseball, lacrosse and soccer and did great in school and we never knew, until that morning!
I had symptoms before they found my AVM at the time I didn’t know what was wrong & with no health ins I didn’t have the money to go to the doctor. I had a funny taste in my mouth(metal like) for 2 years.The came & went so quickly it was almost gone by the time I mentioned it.Along with the taste my whole left side (face & arm) went numb.I had a seizure so thats when I had a CT scan & it showed an AVM. They are the only 2 symptoms I had before my AVM was found.
I had headaches/migraines terrible throughout the last 15yrs, just last June 2010, I have had a real bad headache 24/7 and the AVM was discovered in September…finally got pain meds in December and still awaiting surgery in March for removal, I can’t wait. This is the worst I have ever felt , eyes, hearing, temples (mainly left one) painful to touch, irritability, sensitive to loud noises or voices, never talk on the phone anymore because it hurts my head and only text or use email , very low energy, pulsing and wooshing in left ear and luckily no seizures yet. I also feel sometimes that I have heart pains caused by the AVM .
I didn't think I had any symptoms before the rupture and dx. But in the years since I've come to think that there were some incidences in the years prior to that that probably were symptoms.
A couple of times in my early 30s, maybe 10 - 12 years before the bleed, my left leg went out from under me when I was walking. But it was just a couple of times, and I didn't think a whole lot about it. I also didn't have medical insurance then, so with that and the fact that it didn't happen much, I just kind of forgot about it.
Then, about one or two years before the bleed, at least three separate times, I had intense shooting pains throughout my back, that seemed to reverberate throughout my entire body. It was the worst pain I've ever experienced. Again, no medical insurance and I let it go. NOW, knowing what I do and having the dx I do, if either of those things were to ever happen again I would get to the closest ER, with or without insurance.
my daughter had weakness in right arm constant headaches from the young age of 6 she was often sent home from school doctors kept sayin it was migranes until march 2010 she stated smellin rubber and gas sent her 4 mri and found a large cerebral proliferative angiopathy avm… unfortunetly they can not treat hers she is 16 and stil as all the signs but alot worst now and leg givin way alot aswel.
Hi Jennifer,
The first symptom I had was pulsatile tinnitus in one ear for several weeks. It sounded like my heartbeat but in one ear only. After 6 or so weeks of being misdiagnosed as having an ear infection, I got really bad continual headaches and my blood pressure was elevated. I went to the ER when the sound in my ear suddenly increased drastically in speed and sounded like it was under a lot of pressure because I was afraid I was going to have a stroke. Initially, they thought I had a torn artery in my neck but then found my AVM (right behind my ear - that's why I could hear it) after an MRI. The Neros could actually hear what I was hearing from my AVM with a stethoscope on the outside of my head.
In early November I had a headache that was around the clock for several days. I treated it with an ibuprofen, acetaminophen, naproxen, ice pack cocktail. On the fourth day I woke up with a headache and red welts all over my chest. I decided I better have the rash checked as I did not want to infect others if it was contagious. The emergency doctor looked at me and said, " I could care less about your stupid rash, you need a CTScan."
I chose to wait to see my family doctor on December 8th. We talked about how my headaches had changed over the past several months and agreed that we should investigate. CTscan showed evidence of vascular calcification. MRI was ordered and suggested AVM. Cerebral Angiogram on Wednesday confirmed it. It is 2.5cm (ish) and lives on the left prosterior frontal lobe of my brain. My family physician and two Vascular Nerosurgeons believe my headaches are unrelated to the AVM.
After reading several posts here I believe I have had several small warning signs over the past few years - dizziness, wooshing in my head, many intense headaches, numbness in my hands and feet, mild palsy on the right side of my face. Individually they are minor but with my recent diagnosis they seem very significant. Oh and the rash that took me to the hospital in the first place - likely a side effect of the meds I chose to take to "cure" my headache.