AVM Survivors Network

9 Years Later & It's Still

Hi guys its getting close to 9 years since my AVM was removed via craniotomy from my right frontal lobe and that is great… BUT… as of late I have been having a few episodes that have concerned me and at one point thought i was having mini-strokes.

Ive had about 3-4 episodes where i will be talking normally with no issues and out of nowhere i lose my words and feel like someones hit a reset button in my brain… its scary as i then get a funny feeling in my body and face gets tingles and feels numb for a few minutes which triggers panic attack… that does not help the situation. I then have a headache at the back of my head 20-30 minutes later which goes away with paracetamol. During these attacks I do clench my fists and do all the stroke type excercises to make sure its all neurologically okay.

Had a recent EEG that came back pretty much fine and undertaking further checks within an epilectic centre as per my Neurosurgeons recent consultation advice. She thinks I may be having partial seizures and wants to investigate further as I have had no real history with them… it is worth noting that we just welcomed our third son into the world a month prior and were going through quite a stressful and lack of sleep faze prior to these incidents.

I know lack of sleep and stress can increase seizure activity and i tend to feel cloudy minded on most days before lunch where I feel like i cant concentrate properly and my attention span drops… I also had not seen my neuro since 2016 with a similar type incident where i was conscious and went blank for a few minutes and felt like I was reset… ironically my second child was born during this time and was going through the same lack of sleep period… which is interesting to say the least.

Im just hoping that there is nothing seriously wrong with me as I do want an MRI as I sometimes think the worst… I sometimes think I have had too many CT scans in life and maybe I have some type of brain tumour etc etc etc which is not healthy.

I really want to get through this as I have 3 small children under the age of 5 who really depend on me and I need to fight fit for them and myself… thank you for allowing me to vent my thoughts here and all comments are appreciated… God bless!

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Hey Adrian,
When we have an underlying/previous diagnosis it’s fairly normal to be questioning any symptom as being related to that diagnosis, well, that is, I do. Post craniotomy I get a similar numbness/tingles down one side of my body and use to often think "Is this a stroke?’ I now know that it isn’t but it still stresses me out when it occurs. My wife is all ready to hit the panic button every time as the side of my face tends to droop and she can see somethings not right. But with time it comes good.

I too have had an EEG and an ECG, although both came back ‘fairly normal’ (I say ‘fairly’ as I have an irregular heartbeat anyway) The neuros thought I maybe having ‘pseudo seizures’ where I seem to just phase out, but nothing has been confirmed in regard to this. I now just label it all as ‘It’s just my head’ and try to continue on as best I can.

Merl from the Moderator Support Team

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Thanks for your reply… I think you have given me some reassurance also as I agree with your comment we do think the worst due to our past trauma experiences… God bless!


I had gamma knife surgery for my AVM in April of 2015. In the Fall of 2018, I started having loss of words, headaches, and scuffing my feet when walking. In the end of January 2019, I called my PCP his office sent me to the ER. The ER DR. did an MRI 30 minutes he came in and told me the helicopter was on its way to take me to a trauma center because my AVM cluster that was treated with the laser surgery had developed into an aneurism. After 5 hospitalizations with heavy amounts of steroids via IV’s, in mid-June 2019 I had brain surgery. the part of the brain effected was the area that controls speech, mobility, and memories. I am 1 in a million the surgery turned out great, I haven’t felt this good in years. Get the MRI it is better to have it checked then to have it get worse.

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Thank you for your response… I am scheduled for a MRI next week and pray all works out fine… God bless!

I hope all goes well. I will be thinking about you.

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Thank you… God bless!


Hi. It’s great to hear from you. I don’t feel I know you as well as I would like.

I don’t have too much experience in this space but the thing that comes to my mind is that migraine is a weird and wonderful thing in that I think you could just be having migraine symptoms. By this I mean to say that your MRI might not show anything but some of the effects of migraine could tick the things you list.

It’s difficult to know whether it is better to have something show on the MRI or not. I know that when I doubted how well I was in May or June 2017, I was hoping for a little something visible on an MRI that we could do something about. It wasn’t to be the case. However, that can still be a good thing, I think.

So… Good luck with the MRI next week. However, if there’s nothing to show maybe talk to the doc to see if they think these are migraine or migraine-like symptoms.

Wishing you the very best.



In migraine terms, tingles are called paraesthesia.

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Thanks Richard for your response… definitely no issues and a clear MRI is what I’m hoping for this week as it’s been worrying to say the least… I just want to move on from this but at the same time looking for an answer to my recent experiences… God bless!

I know what you mean!

All the best!

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Hi Adrian, I am also 9 yrs post avm craniotomy and still have the sudden loss of words at times. Not as frequently though through another change in seizure meds. Onset partial seizure neuro says. Our bodies are constantly changing. Also would like to mention the importance of a healthy diet, vitamin B12 .
Best wishes!