AVM Guide Question #4 - How did you discover your AVM and what were its symptoms?

No symptom, nothing. But at that time I had a Grave's diesease, and my ophtalmologist asked for a scanner to see if the eye muscles were intact. After the scanner I had an MRI...and life suddenly was changed. But I now know that the pulsatile strong noise that I heard in one of my ear (only one) was from the AVM (I h.

My brother developed a bad headache while working one evening and when it started getting worse he decided to drive home. While driving, his vision started closing in. His vision became so limited that he could not continue driving so he pulled over and called an ambulance. At the hospital, an MRI revealed a brain bleed. After further testing, they found the AVM.

I have a spinal AVM. My first symptoms woke me around 3 a.m. in late September, 1982, when I was 17. I had an agonizing pain in my left abdomen which resulting in screams. It felt as if I was in labor. The pain would start slow and deep inside. It would spasm and intensify, then burst and send a hot sensation all over my abdomen like a firework going off in side me, then subside as it faded away. Then, the cycle would repeat again and again. This continued for over an hour. I was brought to an ER and later admitted for observation. My pain stopped just after admission to the ER, but the numbness was left on my left side and leg. A throbbing pain remained to my tailbone for months when I walked. I was left undiagnosed. No MRI. MRI's were rare and costly in 1982, and my family had no insurance. I returned to school unable to participate in sports, but very functional. Life went on. I was diagnosed with possible MS in the late 80's. In 2006, my symptoms started evolving. A noticeable limp started. I went to a neurologist and after a year of testing and MRI's the AVM was found. I was told that the T12 was "trashed" and I should have never walked after the bleed in 1982. I did, and did it well. I went on to college, raised two children and worked full time! I feel blessed that I have had that 30 years! The AVM is now swelling and symptoms are increasing to the point working is becoming very taxing. I have a burning pain now in both legs and my left flank. I stumble with nearly every step. An emobilization was unsuccessful in March, 2013. Surgeons say I'm too functional for surgery. I feel as a pond waiting for another bleed to attack. They say my chances of another bleed get higher every day, and my ability to function deceases daily. I will succeed at whatever the AVM offers. I ride my bicycle because it gives me exercise and a respite from my inabilities. I don't know how long I have before a bleed comes, but am blessed to have had the last 30 years "functional".

I was working out in the GYM and doing some trunk curls. I was feeling great and thought I would push myself a bit more and do another 15 reps. After the 3 rep, I had this blinding headache across the front part of my head over the forehead.
I stopped for a while and it seemed to subside, so I carried on doing crunches!!!!
That evening, I never had an headache or anything and had some friends around for dinner that evening. All was well and I was going to see my Doctor the next day to receive my Flu Jab. I just happened to tell my GP that I received this bad headache the day before and she questioned me "what sort of headache" I said a "thunderclap" bang and it felt like electricity was running through the front of my head.
At this point she immediately phoned the Emergency Dept (ED) at my local Hospital for a CT scan as my Doctor thought I had a head bleed.
After being diagnosed that evening by the Doctors at the ED I had Brain Cancer!!!! I was admitted into the Hospital Medical Team for "further tests"
After a full body scan, Chest X-ray and MRI on my Brain, it was finally "thought" that I had an AVM.
It wasn't until 2 weeks later when I saw my Neurosurgeon it was actually diagnosed as an AVM.
A very scary 2 weeks I must say.

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Discovered when it ruptured. No prior symptoms.

I had a seizure, grand mal I think. There could have been indications prior to the seizure though. When I was 11 or 12, I had bad headaches one summer. There was a problem in basic training which led to my early discharge. I had two occasions where I was unable to move my right hand, it basically balled up and I couldn't move it for a couple of minutes. I always had the heartbeat in my head, which stopped when the shunt was put in 5/2012.

My son’s AVM was discovered in a MRI after he had a subarachnoid haemorrhage while playing cricket.

This is a msg for Biker Mom. My son had a spinal AVM and doctors did not want to operate / embolise. However we were recommended Dr. Houdart in Paris who uses a different technique which is lower risk and can work with difficult cases. Pls let me know if you want to connect with him.

The discovery of my spinal avm was a bit coincidental , i had basic key hole surgery in my left knee as a day case 2 days after my left foot went freezing i left it a few days and gradually it went into my groin and i was struggling to pass water ,i went up to A&E at my local hospital and they xrayed my back and referred me to a orthopedic ,by this time i was struggling to walk i was sent for a scan then my world fell a part i was told i needed major surgery as i had a malformation of sepigious blood vessels on or around my spinal cord ? i was told this would probably leave me paralysed at this point i broke down was devastated , i was referred to a neuro surgeon dr k. gnanalingham he was fantastic i was admitted and the morning after i was having my first lot of surgery , unfortunately they couldnt see anything this is when they realised it was inside my spinal cord i recall my surgeon saying they spent hours obtaining a biopsy ,i was taken back to my ward where they carried out more blood test , mri scans , cat scan this went on for a further 10 days then they came to me and told me i had a intramedual avm and that they would be having me in surgery straight away as my avm had haemoraged they said the risk where extremely high that i could end up paraplegic . i spent 8 weeks in hospital and about the same in rehab the rehab should of been 6months plus but i pushed my self to get out quicker

In 1999 I had taking Hoodia, a diet pill that made me hallucinate and I had the worst headache ever so I went to the ER and had a CT scan. They said my vessels were swollen and sent me home with a shot for the pain. 2004 I was going to Nursing school and I started getting severe headaches which would wake up out of my sleep. I thought it was stress from studying. I went to my family doctor and I told him about my headaches and also told him about my mother who passed away from a stroke because of an AVM. He sent me for an MRI and called to let me know that I also have an AVM. I was shocked because they had given me the CAT scan years ago but didn't show an AVM. Looking back I had allot of symptoms like passing out a few times for no reason when I was about 15 and when I was 12 I was in the hospital for 2 weeks from a severe headache, couldn't walk and was hallucinating for 2 days. They did many tests and never did find out what was going on. My mother's doctor did think I had a possible AVM then but it never showed on any scans. I still have daily headaches, off and on numbness on my face, arm and leg, allot of earaches and focal seizures. I also get severe metallic taste in my mouth with eye leg and face twitching off and on all day every day. So far my AVM is still inoperable. I have had 2 Embolizations but they wont finish any treatment because the last Embolization caused me to loose my speech which I had to have speech therapy for a year. I still have problems getting my speech out. I have also lost allot of my memory.

I was a totally normal 14 year old, just five days shy of my 15th birthday. I went bowling one night and afterward, while riding in the backseat of a friends car, my head just blew up. I remember screaming and holding my head and telling my girlfriends that a bomb has gone off in my brain. I huddled in the backseat, screaming in pain for about 3 minutes and then the pain stopped completely. I went on to finish a typical teenage girls night out and then returned home. I didn't say anything to my parents about the bomb in my head earlier that night and went straight to sleep. At 6:00 a.m., and after dealing with a bomb in my head for what seemed like all night, I made it to my parents room, stood by their bed, and uttered "my head." I then went into convulsions and a coma. This was 1973. Dr.'s pumped my stomach for drugs, did all kinds of testing to rule things out. My mom was insistant that they perform a spinal tap. It was full of blood, telling doctors I had some sort of bleeding in the brain. When I was stable I was sent to UCLA in Los Angeles, CA. There I received and angiogram revealing an AVM.

My hubby Sean's AVM was discovered during a follow-up appt. while I was having an ultrasound when I was pregnant with my 2nd child. Sean had been having headaches for a few weeks already and the doctor had him on migraine meds but for the last couple of weeks, Sean was getting thinner, unable to hold any food down and just aging by the day. At first we thought he had the flu or was getting dehydrated and just stressed out, but he just wasn't looking good or had any energy at all. So I was in the room having my ultrasound and we were waiting for lab results from one of the exams he had the other day. Next thing I know, they are telling me that they are getting an ambulance over there to pick my husband to rush him now to the hospital because they think he has a tumor in his brain the size of a grapefruit according to their xrays. I was like WTF? So within the hour, my hubby was in the ambulance and I was now following them on the fwy in our 4Runner to the hospital. They did an EEG and I had to have my sisters come pick up our first daughter who was 2 years old. Sean stayed in the hospital for 2 days and then they told us that he had AVM. I was terrified and in shock as the next day I also got laid off from my job and then had to tell his boss that he could not return to work because he was gonna have radiosurgery and brain embolization within the next 2 weeks. My life changed over night in 2004. Turned out the grapefruit was the blood that needed to be released from his AVM before it turned into an aneurysm.

My daughter’s avm was discovered after it ruptured. She suffered a sudden onset headache and vomiting.

My Avm was discovered after four days of severe neck pain and headache… noticed in afternoon that my right side of face was all dropped. By the time I was being sent for CT scan at the hospital I lost use of my right leg and speech became very affected. Been sent for MRI and Neurosurgeon Tim’s me I had a stroke due to a bleed.

Hi mine was an incidental finding for an unrelated cyst in my eye. I had gamma knife and AVM was erradicated 3years later. Then an aneurysm was found and coiled. Only side effects are slight memory loss and mood swings and also co-ordination slightly of nut thats all so im happy with that!

My AVM was found when my GP sent me for a MRI after I had a gran-mal seizure in sept 2018, I was 30. EEG results came back with dysfunction in both temproal lobes and during the Angiogram it was discovered I also have a Aberrant Right Subclavian Artery. I cant pin point when it began to be symptomatic, however I have memories of headaches and focal seizures from about 7-8 years of age.

Had a vacant seizure at work paid no attention 2 months latter a grand mal in a swimming pool no one home when it happened , 8 weeks ago had a seizure Out surfing the last last thing I remember was that the whole ocean changed shape and that’s it woke up next day survived 2 drowning in 4 years