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AVM Survivors Network

Re-introducing Myself

It’ll be fine. You’ll be in good hands and they will guide you through what they are going to do and what happens at each stage. All you have to do is turn up in the right place at the right time. I also think good hydration is important up to the point you are told to stop drinking.

I am one of the least brave people I know and I got through mine just fine. If I can do it, anyone can.

We’ll be thinking of you all the way.

Very best wishes,

Richard

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You’ll do great. You’re in the best hands. Let us know how it turns out. By the way, those hospital rooms are extremely comfortable and have a great view of Midtown.

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Good luck. Let us know how it turns out.

And good luck from me, too!

I continually say to people that having an embolisation is a perfectly doable thing and having a pipeline installed is pretty much the same, I should think. If there is no glue embolisation going on at the same time, it might even be easier / more straightforward than a glue embolisation cos you won’t have the aftertaste of the solvent for the glue, which is just a bit unpleasant.

Honestly, if I were ever to need brain surgery, this is the way to do it (for me). Oh, wait, I did need brain surgery and this is the way I did it. But I’d do it again if I needed, it was that ok. Honest.

You’ll be fine and you’ll be sorted. You can then move on. It can take a long time for your head to feel normal after any naughty blood flows have been blocked up – @tacos4life and I have been sharing experience in this in a (separate, I hope) thread – but in terms of worrying about having a bleed, you’ll be back to the same risk level as anyone else you meet, once you’ve had your op. So hopefully that will mean you’ll feel back out of the hole.

Very best wishes from me!

Richard

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Also, it may help to know that the doctors at NYU invented/pioneered these types of treatments. I fully expect a good outcome for you. The nursing staff is also outstanding. I have never felt so safe and comfortable at a hospital.

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That’s really good to know. I’m at home, prepping to go into Kimmel Monday. Just took my first dose of Clopidogrel and aspirin, prednisone starting tomorrow. All these meds before the procedure.

Thank you for sharing your experience. Going to the Internet is often a minefield of anxiety, but having someone who truly knows really takes a good chunk of stress out!

Wish me luck!

Anna

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The Kimmel building is barely a year old, everything is so nice, clean, and new. Enjoy that view from the 16th floor afterward. I spent time watching watching the ferries, helicopter tours, and just everything going on outside in general. The view of midtown at night is nice also.

You’re going to do fine. Honestly the worst part is the anxiety beforehand. Afterward, you’ll have this behind you and you can start recovering. Dr. Raz and his team are really outstanding. They will work to get the best outcome possible, and the nursing staff will definitely look out for you after the procedure as well. I really have no doubt that you’ll be ok.

Anna,

All the best! As Taco says, you’ll be fine. I agree that we worry more about it than is good. Just relax, turn up in the right place at the right time and the nurses will look after you all through.

Best wishes,

Richard

Anna, I know we might not hear from you for a while, but let us know how things turned out once you are able.

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Thinking about you Anna. Take Care, Johm

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Hi guys,

The procedure went fine. During my observation time, I felt fine. Home now with a headache. So on the one hand, relieved I got the op, yet feeling like yuck with this headache. Sigh.

Anna

The headache will pass fairly quickly. I knew it’d go well, I’m glad. Soon enough this will be behind you. How was your care overall? Did they onyx or nbca you?

Anna,

Well done! It’s a worry going into these things but hopefully not as bad in reality as we dream it might be. As Taco says, the headache will go. The contrast material clogs everything up, just like a night on the town, so that will clear. I felt my head was smarting rather from the whole thing, so it took a few weeks before I felt comfortable but it is entirely gettable throughable.

Get well soon!

Richard

Good to know. It did take me a week or so. Finally feeling like my head belongs to me. Trying not to think about the followup six months later. I’m on a blood thinner and aspirin regimen right now. Did you guys have to go on that after the stent? I’m not much a drinker so the no alcohol wasn’t an issue for me. But what about coffee? I’m finding out the blood thinner itself was the bigger adjustment. The muscle strain ointment I used has Diclofenac which apparently would react to my Brilanta. Goodness!

Hey! It’s good to hear you again!

Thinners is unusual but maybe that’s because you’ve had a stent. I’d assumed a stent was more often for an aneurysm than an AVM but your doctor knows stuff I don’t!

Keep getting better! You’ll be fine!

Very best wishes

Richard

I had a different type of stent put in (venous), but they put me on aspirin and plavix for 6 months. I couldn’t tolerate the plavix anymore after about 2 months or so, so I went off that. Eliquis was also a nightmare, so I’m on Warfarin and aspirin for the time being, and I think I can go off of it at the end of the month now.

They said I could drink coffee, but caffeine is a vasoconstrictor, so I’d say maybe give it a month or so before you start again. Sometimes it caused more symptoms for me. Tea is good.

I’m assuming they put you on plavix and aspirin? With plavix, I was experiencing really bad anxiety, chest pains, dizziness, nausea, twitches, feeling cold, elevated heart rate and blood pressure, my liver enzymes were elevated, and intolerance to things like caffeine. Once I got off it, I started to feel better.

Your 6 month follow up will be fine. Just a simple angiogram.