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AVM Survivors Network

Its back

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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OMG, I honestly was under the impression that once it was removed, you never had it again…
Like you said, keep your faith.
Show it that you are not taking this anymore & you are the boss.
You , your wife & the boys will be fine. Think positive.
IM LOST FOR WORDS!!!
Hang in there my friend, we are all rooting for you.
XXXXXX

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Richard,

That’s one of the ways my better half is actually probably closer to my better 3/4ths. I worry about things and then they don’t happen and I’m happy. She doesn’t worry until it’s something to really worry about. A few years ago, she came back from Haiti with an infection that was traveling from her ankle up her leg. I didn’t get nervous until she asked one of our daughters to pack her a bag before we went to the ER (because “I know I’ll be spending a few days there.”).

I’m learning to ask her - “is this something I should worry about?”

And then take my cue from her. Of course, it helps having an RN, a DPNP (aka Dr. V) and a Pharmacy Tech in the family.

TTYL

TJ

TJ,

I’m definitely more like Mrs V than Mr V. After all, I went for my AVM diagnosis, knowing what I’d got (because I had self-diagnosed) having told Mrs D I was getting my hearing checked.

Obviously, as soon as I had a confirmed diagnosis, having a brain AVM was something I felt the need to be open and honest about, so we then had the “I need to tell you something…” conversation.

Adrian

When do you go for your next appointment? My brain tells me a couple of weeks. I’m still crossing my fingers!

Best wishes all,

Richard

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Thank you Kellie… God bless!

Hi Richard, I have had my consultation with a neurologist last week who wants to have me do a 5 day EEG to check for any seizure activity, as this is the main reason for looking into all these tests etc… I believe this will happen before Christmas and advised any issues will mean I automatically lose my driver’s license for a minimum of 6 months until I can show medication are working… not driving again will be hard as I rely on it for work as I’m on the road all day… I will take it as it comes I guess!

As far as that I have an angiogram consultation in late February to determine what they want to do and when etc… just holding tight right now trying to be positive and take on this battle… it’s been really hard but I have been dealt these hands and have to see it through for my wife & kids… God bless!

Well, I’m busy hoping all the right things for you!

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Thank you… God bless!

Hi Adrian
Checking for seizure activity sounds like a good idea and something to get out of the way. Im crossing fingers that you don’t have that and won’t need medication. Once you get the angiogram done then at least they can tell what is going on if anything and you can move forward from there. You are stronger than you think and have great faith that will see you through:)

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Thank you for your kind words Carol3 they really mean a lot to me… God bless!