Hi all, I’m very new here. Having just recently found this site. I was diagnosed several years ago with fibromuscular dysplasia (FMD) of the internal carotid arteries. My recent head and neck CT scan showed a small possible AVM. My appointment with my FMD specialist isn’t until the end of August but in the meantime I have an appointment with a neurosurgeon in two weeks. I’m trying to be patient and calm. I am 64 so it’s curious that I developed an AVM in two years time since last CT scan (I get them every two years as long as no issues). Except over the last 12 to 15 months I’ve had approximately 8-10 what I call “episodes” but now believe I was having seizures. I’d experience about one a month except I recall having two in a weeks time. I messaged my FMD specialist and she said it wasn’t urgent but still gave me the referral to the neurosurgeon. I guess what I’m hoping is the CT Scan isn’t accurate, but that hadn’t been the case for me in the past. Thank you to whomever reads this lengthy post.
Welcome! AVMs are generally congenital, but as we learn here there seems to be nothing that is 100%! I would imagine the neurosurgeon would do some more investigation, MRI and angio. Hopefully it was a misread! Keep us in the loop, we are here to support you. I found out what an AVM was and that I had one at 48 when it decided to bleed. Mine was in the left temporal on the inner side of the lobe. That is over 9 years ago now. Take Care, John.
Thank you, John, for your response. If it IS and AVM that would explain the mysterious seizures I’ve had the last year or so. I’ll know more in a couple of weeks.
I was also 63 when they discovered my AVM after a seizure (at the gym). They assumed I had it all along. I had CT scans before and it never showed up. It was only after an MRI after the seizure. They decided that since I had it for 63 years, to just monitor it. My wife was convinced that I may have been experiencing mini seizures for years when I would have long pauses during the middle of a conversation ( I never knew that was happening). A year later I had another seizure after working out. They put me on Keppra anti-seizure medicine. A year later and I had become complacent in taking the meds regularly, and I had a third seizure while out running. A month later I had a brian bleed. Everyone one is different, but you may want to inquire with your neurosurgeon about anti seizure medicine.
BTW, I had radiation treatment 5 years ago to shrink and obliterate the AVM. It is smaller, but still there. I’m now very deligent about taking my keppra twice a day and have not had another seizure in 5 years.
That’s so interesting. I’ve read that “generally” AVMs are congenital. I’ve actually had an MRI of my head and neck several years back and that wasn’t seen. My seizures (I don’t know what else to call them since there wasn’t anything diagnosed to cause them) involve such a weird feeling almost like death and it starts in both shoulders across the chest and down both arms to the hands and I feel like I could collapse. I only lasts for maybe 30 seconds and then I’m so fatigued afterward. I’ve had approximately 10-12 in a year’s time. Initially it was scary, but now that they’ve happened so much I know they won’t kill me. Ha!
I appreciate your response. How scary that you had a brain bleed after your AVM seemed to have been behaving itself. I’ll know more in a couple of weeks after seeing the neurosurgeon.
Hi Cindy, I also had a congenital AVM on right side of my Brain which was found incidentally. I had 3 Embolisations in 2015 and Stereotactic Radiotherapy in 2016. I had an Angiogram in 2018 which confirmed that my AVM had been obliterated, it unfortunately my Angiogram also identified a Dural Fistula on the left sided of my brain which did not exist in 2015. I had another Embolisation which dealt with the Dural Fistula and is now considered benign. Since 2018 I have had a series of Episodes/Seizures (6 this year including 2 this week) with varying degrees of pain/urgency requiring blue light ambulance to hospital to get it under control However, last year I was prescribed an Emergency Medication (Midazolam) which has stopped the Episode/Seizures within approx 15/20 mins. This seems like a good solution for anyone whose Episode/seizure last beyond 5 minutes.
Hi Rafa, that sounds scary! I hope this medication enables you to be seizure free. It sounds like you’ve been through the wringer with your treatments. I appreciate you sharing your story with me.
My seizures were completely different. My head and neck would freeze, I could not talk and my neck would turn to the right until I passed out. Every time I would wake up in an ambulance on the way tot the hospital. My chest always hurt for days because whoever found me thought I was having a heart attack.
As I look back, I see my seizures as a warning sign. I’m very lucky to have recovered 95% from my bleed I had to relearn who to talk, write, type and do math all over again But while lying in ICU, I watched them wheel in many new patients that weren’t able to walk out like I did.
Best of luck to you.
Did your chest hurt because someone was doing chest compressions or was it a result from the seizure? It’s interesting how people’s seizures are all different. It sounds like a very tough scenario for you with passing out from your seizures. And also much praise for your strong recovery.
It was from someone doing chest compressions. It hurt for three weeks from one guy who put everything into it. I had two people receive awards for “reviving”me.
Everyone is different.
Oh my gosh, sounds excessive! But it saved your life!
My understanding is that unless you’ve pushed hard enough, you’ve not done it effectively, so to save someone’s life, it makes a massive impact, popping of the cartilage often occurs and there is a risk of breaking a rib.
I did not know that!