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AVM Survivors Network

Its back

After 9 years of having my AVM via craniotomy removed back in 2011 I recently had an MRI check due to some funny feelings I had recently been experiencing!

Today was one of the worst days of my life as I have been told it is regrowing in the same location… I was told it was removed completely back in 2011 so hearing this news is every AVM‘ers worst nightmare.

Scheduled to see my neurosurgeon tomorrow to discuss the results… when this happened in 2010 I suffered a bleed a month later in 2011 and was newly married… fast forward to today where I have 3 small children with the 3rd being only 4 months old… the responsibilities this time around really will hurt us as a family!

I am so lost for words right now and so angry but I knew I didn’t feel 100% and something wasn’t right… the journey begins once again & now I need to see what they think is best for me!!!

Before I speculate on what to do I have to consider everything… I’m scared that I have this ticking time bomb back!

I will however continue to keep my faith and pray to God that he keeps me healthy & strong for my wife & 3 boys.

Sorry for the bummer post but any words/comments/experience in this scenario is appreciated… God bless!

Adrian, my thoughts are with you, that is news none of us want or want to hear. Thank goodness you paid attention to the feelings and have picked it up now. I’m sure there will be a lot of emotion and know we are here for you. Hopefully your appointments happen quickly. Take Care, John.

Adrian, I’m so sorry! There is no good time to receive that kind of news, but with small children,…I’m hurting for you and praying for you and your family.

Thank you for the kind words… God bless!

Hate to see this, Adrian. We have been at this long enough to know the importance at finding the BEST Neurosurgical TEAM for treatment. At the time of your initial hemmorhage you had go with who was there to save your life. Technology has improved over the years. Be diligent. Best to you and your family, GK.

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Adrian,

1978, 1986-7, 2009 and 2018-? Those are the times that my AVM has come up and bit me. In 1978, Mayo said they got 98% of it but couldn’t get the last part (something about spinal cord risks - I was in 8th grade, what did I know?)

As “my Randy” has said to me, “So it sounds like this thing is sort of like a dragon who shows up every now and then, and so far you have been able to fashion a reasonably normal life. Until this last one. This one left some scars and you might heal them here, you might not until the other side.”

I’ve fought back against this thing in 4 major battles and I’ve walked away from each one. Not the same but still me.

You can fight this thing. Get yourself a good medical team and I would strongly recommend a counselor who you can vent to and can talk about thoughts and feelings that you might not want to talk to your wife about.

I was talking last spring with the principal at my son’s school (don’t worry it wasn’t because he did something wrong - at least not this time.) He asked me, “So, how are you doing?” I asked him back, “Which do you want, shall I tell you the truth or a nice story?” He said, Truth. I told him I would e-mail it to him.

I did, a week later, met him at my son’s gospel choir (https://vimeo.com/297994784 the first thing he said, “In spite of it all, you’re still standing” (followed by a great big hug.)

You’re still standing. God brought you to this place on purpose. Now we have to figure out why. And then do it.

TJ

P.S. The link to vimeo is my son’s gospel choir in his senior year of high school. I share it with you because every single one of those kids has a story. A story of pain, trauma, immigration camps, violent attackers all sorts of evil that came up against them. That’s what the Potter’s House school is there for - to welcome all.

P.S.S. I bet you can’t guess which one is mine. Message me directly if you think you do have it figured out.

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Thanks TJ your reply is greatly appreciated… I’m curious if it was a trick question about the video as your profile does say you have 2 adopted teens… God bless!

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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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