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AVM Survivors Network

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Nope not a trick question. My 18 yr old son goes there. His 18 yr old sister goes elsewhere,

I’ll give you a hint, he’s not the white guy on the end.

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Adrian:

Your post jerked me back to reality! After two Gamma Knife Radiation procedures, a small percentage of my AVM is still in my brain. I was always told that a 2nd rupture is possible … but “likely” won’t happen. That is B.S. because with AVM’s, anything can happen. I am so sorry you are on this journey again. Thank God you knew when something didn’t feel right and you got help right away. Hang in there. We are all pulling for you and your precious family. Wishing you the best on this leg of the journey.

Sharon D…

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LOL I figured that was the case… that’s why I asked if it was a trick question? Is it safe to assume it’s one of your twins?

God bless!

Hi Sharon, thank you for your kind words and support.

update* my neuro advised she would speak with her team and committee of other neuros as they may want an angiogram to be 100% sure… they believe the new MRI machines may have picked up more screws & clips that may have affected the image & caused the radiologist to make a mistake (praying that’s the case) however she couldn’t rule anything out on the images 100% … even so this is a little relieving but further check may be warranted! Until then the all clear is still not there… will keep you guys posted… God bless!

Adrian,

Thinking of you. All you say is how we would all feel… having the young family and bigger responsibilities and all that. I’m with you in hoping that a further angiogram will show something else but I know also that if it were me, having niggly “it doesn’t feel right in my head” feelings would mean to me that perhaps I need something doing. I’d be hoping it’s just a little thing. If I needed an embolisation again, I’d go straight back. I’m hoping you might get something much smaller to deal with than last time.

So… here’s thinking of you. I’m hoping that as Greg and others say, technology, knowledge and time are more on your side this time than they were 8 years ago.

I think we all have this risk: these things seem to need 101% removal to be sure.

All the best,

Richard

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Thanks Rich I do hope it’s nothing & I can move on… I’ll keep my faith & prayers strong… God bless!

Once again thank you to all that are posting kind words & encouragement… it’s really appreciated… God bless!

Adrian, More importantly, I would think, are you experiencing similiar or the same symptoms you had before your initial rupture? (Or even new symptoms) Just a thought. Best wishes, GK

Hi Greg I can confirm these are all new feelings… I didn’t find out I had an AVM until I was 30 with no symptoms during those years… I’m not sure if additional stress has added to my funny feelings etc but can never rule it out… God bless!

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I’m just telling you stuff you know but whatever you can do to reduce your blood pressure and/or stress, do.

I feel like I’ve been a bit where you are. Don’t panic. Don’t dream up the worst case scenarios. That just means you worry longer than you needed. Just go with “I need this looking at and then we’ll see what needs to be done (hopefully nothing nasty)”.

Sending you best wishes, as always,

Richard

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So sorry to hear this Adrian1. My understanding is that AVMs can regrow unless removed entirely. But as you had been told that was the case its hard to know what to believe… Very best wishes.

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Thank you all again for the support… God bless!

Hey Adrian

That’s a shocker to hear and I’m really sorry. I can somewhat relate a little. Please keep us posted on your progress - how much has grown, did they confirm to have it completely removed the first time too? I know it’s a scary time but technology has improved and I’m sure you will find the best team. Wishing you all the best mate.

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Hi Lin, I can confirm they did an angiogram after my surgery & was advised it was completely removed… they may want to check again with another angio but waiting on their instructions… at this stage I’m using the same neuro as I trust her team & experience… will keep you posted… God bless!

Any date on an angio? Great to hear your confidence in your neuro. I can relate to that, it helped me know the “right” thing would be the result. Take Care, John.

I won’t have any news until next week from what I believe but will be updating you guys… God bless!

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UPDATE I was told today that a committee of neuro’s compared my scans & think that the MRI being a new and stronger machine has picked up fragments of my operation such as clips etc… in light of this they said they don’t have any major concern but would like an angiogram done anyway just to rule out everything 100%

This is great news for now but still won’t get 100% clearance until angio is completed, which I’m nervous about… I’ve had an angiogram pre and post operation to remove the AVM in 2011… it’s been a while and I’m both scared about the procedure and possible findings… I remain positive and comfortable God has me covered…

I’m due to have a neurologist appointment end of the month at an epilepsy centre to check other symptoms I’ve been having… keeping the faith & love you all you guys and girls wishing me well & sending prayers… God bless!

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Adrian!

This is pretty good news! Rather better than we thought, I’d say! I’m hoping the angiogram goes just fine and there is nothing to see.

I’m not good with surgery and I’ve had three angios so far. I had a bit of a fainting session in my most recent angio which put the wind up the interventional radiologist but we just took it easy and one of the nurses distracted me while they carried on. It was fine. The pressing down to heal the wound is the bit I don’t like but it doesn’t last long.

Wishing you the very best!

Richard

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Thanks Rich I am definitely happy about this feedback & find the pushing down to clot the wound on the angio easier than the actual angio itself… the initial cutting & the funny taste & heat flush all things I hate… but guess I gotta do what I gotta do… God bless!

The way to look at it is that it is a small inconvenience to be told there’s nothing to worry about. A day well spent.

All the best :+1:t2:

Richard

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