I see so many people on this site who found out about their AVM’s before it ruptured. How did you all find out? Most people don’t request a CT scan from their doctor randomly + it might have allowed me to see this beforehand. I had bad migraines before the rupture, but nothing that pointed to a life threatening condition!! A part of me wishes I knew before, but I think I still would opt for surgery as my fix (because my surgeon is a rockstar), he was able to resect the whole thing!! Nothing showing on my 6 month angiogram/follow up!! I pray it’s this clear next year!
Mine was a total surprise to me also.
I had some warnings of what was to come, but when
I went into my health care facility they were busy that day and
I only got to see a nurse practitioner. They did not see it as a
warning. But it all worked out.
I am so glad that you also got that second chance in life.
I am happy for you!
Thank you so much! Same to you!
How’s this? I could hear mine!
Back in Oct 2015, I could hear a very faint heartbeat. I asked my doc if I had wax in my ears and was therefore hearing internal things more than normal. Not much wax there, so we parked it. By Jan 2016, it was louder and I started Googling things to see if it was worth going to the doc. I hate organising to go to the doc – it’s such a faff where we are. I found people being told “tinnitus. Just put up with it” so I didn’t go to the doc.
By April, it was definitely louder and I did some more concerted Googling and I found the following page:
I had everything that is listed for the sigmoid sinus/transverse sinus DAVF and thought “O.M.G.!”. So made an appointment to see the doc.
Rather than telling her “I think I’ve got one of these…” I told her my symptoms and she seems to have initially diagnosed straight tinnitus, so I got sent to ENT after 4 months on a waiting list.
When I saw the ENT guy, I had my hearing checked in one of those sound-insulated rooms and then saw the consultant. He said “so, Mr D, how long have you had tinnitus for?”
I said “about 20 years but it’s not the tinnitus I’m bothered about. It’s the pulsatile tinnitus”.
He had to go and find a stethoscope but then plotted over my head with it until he found a spot on the back of my head. He said nothing but didn’t move either. I thought I know you’ve found it!
Eventually, he said “well, Mr D, you’re my last patient of the day but you’re my most interesting patient of the day!” and he confirmed an AVM and referred me for an MRI.
I don’t know about you but, I’d worked out that I had an AVM from that article 4 months earlier. In fact, I’d managed to make my own recording of the bruit (the noise) by pushing the microphone of my mobile phone to the back of my head in the July, so I was quite convinced I had an AVM. But the confirmation by the doc knocked the bottom out of my world in one step. Properly “sh*t!!!”. It’s quite a turnaround from not really being worried about my health to rather worried.
Hope this is interesting!
I had about a year before my bleed, a strange illness. Occasional bad headaches,
along with stomach illnesses. The thing was it got a little better, then it would return.
It only ended when the nurse practitioner gave me an IV to get my strength back.
After this during the coming year…I would sometimes have the same bad headaches,
that would only leave me after I went off to sleep. I didn’t go back to the Dr. because
I had already tried that and figured I was OK there. Then about a year later, I suddenly
had my major bleed, and came close to departing this life. Was this all part of the same problem? No Dr. had ever told me that I was going to one day have an
I’m blown away by this one! What a way to find out!
I was pretty blown away myself, as we all are!
I joined here about a month after seeing the ENT guy, still waiting for that first MRI, still very much mentally blown apart.
I’m doing more research into HHT (Hereditary Hemorrhagic Telangiectasia) to see if there are any additional screenings I should have. I had a lot of nose bleeds as a kid!!!
These stories are so very interesting! Mine follows the same trend, as I really had NO apparent signs. But after thinking about prior experiences in my life I am 100% they were all due to my AVM.
Three years ago I found about my AVM luckily by having a grand Mal seizure. My boyfriend and I were in college, socially drinking (I promise nothing out of my normal haha!) and came home for the night. That next morning, after hydrating with my normal water, my boyfriend woke up to me having a grand Mal seizure. I can’t imagine what it must of felt like to watch someone go through this. Anyhow fast forward a bit, I was sent to the local hospital where basically they asked if I was drinking the night before, did a urine test, and told me to follow up with my PCP for a CT since I was from out of town. Quite baffling to say the least, most especially for a first time seizure patient.
Fortunately, I was responsible enough to follow up with my doctor immediately. I feel some other kids might not have done the same being in college. Who knows, they would’ve been too scared to tell their parents they drank to a point of seizure and just hope it would never happen again.
I had my CT a few days later and my PCP almost called me immediately after leaving the parking lot. My mother and I were quite stunned, as we never heard of an AVM. My doctors were super efficient with setting me up with a neurosurgeon and neurologist that week. I had 2 angiograms, 1 embolization, and finally a craniotomy to remove my golf ball sized AVM on my left temporal lobe.
Looking back, when I was younger I would have dizzy spells, pass out, and have the ringing in my ears too. To say the least I am one lucky person.
Glad everyone in this thread is doing well!
Hi. My them 15 Yr old son had a seizure… Then MRI… Then AVM… Till then he was fine, played cricket… He had blackouts for few milliseconds… He never told us as he thought its normal, not see the black board in school for a fraction of a second… He underwent GK 3 yrs ago… He’s progressing…
Golf ball sized?! Wowwwwww. Glad you’re okay!
Good to hear he’s on the mend!
My avm was found after my first stroke in 1984, I was 8 years old at that time. My parents took me to the doctor because I had short term memory loss and wasn´t as active as I usually was. The doctor told my parents that it was nothing, two days later we were back at his practice and he told my parent to take me to San Francisco to a neurologist. There they discovered my avm. After several studies I received treatment ( in that time it was in experimental phase). I have survived four strokes. I will pray so that yours is clear next year. Have faith everything is going to be fine. With all my love Angie
I found out about my AVM almost 2 years before my 3 simultaneous brain bleeds.
I originally visited an ENT doctor to investigate my life-long inability to smell. When he came up with no results from physical and sinus exams, he chalked it up to damage/pressure from previous concussions from my MMA career and had me sent for an MRI to confirm.
Turns out I had a medium-large AVM in the motor cortex region of my brain causes frontal lobe pressure and is also suspected to be the cause of my migraines as well.
Hope that gave you some insight!
Seems like having a good physician who takes you seriously is the best way to survive…a part of me is just grateful to be alive, but a part of me wishes I’d known sooner.
Wow, that is amazing Angie! So glad you are still here!
It definitely did. Thank you for sharing!
Thank you very much reallygeekin. I am grateful and feel blessed to be alive.
I had a headache for about a week after lifting heavy weights and saw my GP who requested a CT scan… I was told that I had an AVM 2 days before Christmas in 2010 and was booked to see a Neuro February 2011 to discuss my options… unfortunately for me I had a bleed on 31st January 2011 and was operated on late February 2011… turns out the initial headache had nothing to do with the AVM… God bless!