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

Symptoms & Treatment AVM 101 - AVM Guide Questionnaire
41

My story is unique like most I guess but I am in no way embarrassed or concerned about being upfront

Long post but i feel it has some good info

I had depression and anxiety and very mild paranoia (you’d more call it not trusting of people really) and we didn’t know why do I was put on a high dose of a big mix of drugs but it didn’t work.

I had also had very bad headaches for years and my eyes felt like they were popping out of the sockets so I used mild painkillers (non opiod) 24/7 and eye drops 24/7. All the drs i saw ocer the years just saud i had dry eyes and headaches are “normal”… Not one sent me for a brain scan

I was sent voluntarily to a psychiatric facility to withdraw off the psych meds that were not working (and making me feel worse)
While there, the Dr said since you’re an ex alcoholic (quit drinking 15 years ago, still sober and always will be), we should do a scan to see if you damaged your brain from alcohol consumption.

Well no damage from alcohol! Great. But they found an AVM dural av fistula that they thought was small and probably just needed monitoring

I then went and saw neurosurgeons and they said it was my choice totally but they believe it was minor and not worth the small risk to do an angiogram. But they did say they can’t know for sure unless I have an angiogram.

After much thought, I decided to have the angiogram. The exact words of the Dr immediately after doing the angio was “That’s about to rupture” and once he learnt the intense physical work I did, he said “you’re lucky to still be alive”

So I’m super grateful that by chance they found it and I decided to have the angiogram.

The reason for the long post is partly due to explain that since I had surgery my paranoia and associated depression and anxiety symptoms have subsided and they believe the pressure from the avm on parts of my brain was causing psychological issues.

My eyes don’t hurt anymore and I get occasional headaches. So avms can cause many more things than some people realise like psychological.

I will say that I do have some depression and anxiety specifically related to thoughts about my avm but it’s very different to the symptoms prior to surgery. No paranoia etc

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42

Mine was discovered after a sudden tonic clonic seizure. Prior to that about 10 days, I experienced numbness on my right sole and working as a nurse I thought I was just tired. The day I had seizures, I had a bad headache that felt like the normal once that I usually had. AVM was confirmed with CT and MRI as I had 2 seizure spells in the Emerg.

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43

Welcome to the site! We have a great crew with an incredibly varied array of experiences. In over in Manitoba and found my AVM in 2016 when it bleed, and the adventure began. I had Gamma knife and in February 2019 got the obliteration verdict. Great to see you’re in the medical field, and your studies continue. Any questions feel free to fire away! Take Care, John.

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44

I was at work. I work at a blood donation center. We were on the bus that day taking blood donations. I went to take the needle out of a donor’s arm and all of the sudden I couldn’t remember how. This was something I had done thousands of times. I was embarrassed because I was going to have to ask someone else how to do it. I went to ask someone and I couldn’t speak. I just remember stuttering and turning to the right and that was it. Next I know I’m on the floor and one of my co-workers praising Jesus that I had started breathing again. They said I had a death grip on the donor’s arm. They had to get me to let go him and then had to get the 16 gauge needle out of my hands without it sticking me or them. I had a really bad seizure. The bus was full of donors. I was taken by ambulance to the hospital and they did a CT and an MRI. Found the AVM and sent me on down to Jacksonville.

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45

Happy New Year. I had my cerebral angiogram done in the last week of October and met with the neurosurgeon after 2 weeks. Praise God it was small unruptured AVM on my left parietal. Surgeon recommended Linear surgery: ( said it’s almost comparable to gamma knife ) on terms of benefits and risks. So far seizures are managed by Keppra and lamotrigine, headache med was change from Aventyl ( this one didnt help insteas increase my heart rate and felt anxious all the time) to amitriptyline.On and off migraine but not too bad. I believe you are from Canada as well, how was your experience? Sorry I wasn’t able to scroll into your profile. One of the causes of my migraines is bright light and blue light. I cant use celfon too long.God bless you

46

I discovered my AVM following a presurgical angiogram for my familial brain aneurysm.

47

My AVM was found after a seizure that lead me to the ER where I got a head CT that was the answer to all my lifelong questions. My symptoms started when I was around 5 but aggravated about 10 years old. It consisted of nose bleeds, migraines, throwing up and shakeyness (like as if I had low blood sugar-not diabetic but once dated one). I had multiple episodes where the closest thing I can describe it is a seizure growing up but surprisingly was never taken to the ER- oh the neglect :confused: I now know it may have been bleeds or mini ruptures. Anyways that one big seizure at 25 finally diagnosed me and to this day I consider that neurosurgeon my hero and guardian angel because he knew what it was before ordering the head ct and guided me to the right path of getting rid of it.

48

Mine was noticeable from birth, just a cluster of green and purple veins on my right groin which has always looked like bruises, and back in the 80’s my mum was told it’s just a harmless birthmark… scroll forwards to my 20’s in agony MRI revealed an AVM attached to my femoral artery. Unsuccessful surgery and years of schlerotherapy still unsuccessful. I’m 30 now and can’t move some days so the only option now is to remove a part of the femoral artery where the AVM sits and rebuild it, they say it’s never been done before as far as they know and I’m scared.

49

A Seizure and subsequent testing showed a brain AVM.

50

Welcome! You’ll find we have a lot of experience here so hope we can help out! We do have an active extremity group that is quit diverse in their experience. Take Care, John.

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