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AVM Survivors Network

Re-introducing Myself

I see Dr. Raz as well. He’s such a good guy. Shapiro and Nelson were also involved in my surgery.

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I just got back from my follow up angiogram. They found two small fistulas, which they embolized. I’m already back home.

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Eek. I’m glad they caught it and fixed. It’s what bothers me: the uncertainty, the knowledge that the stent isn’t the one time fix. Sigh.

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They will take care of you though. They will eventually get it fixed and under control.

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Pretty marvellous!

When I was feeling a bit unsure whether my first embolisation had done all that was needed, I would say I was hoping for pretty much the few days you’ve just had… something small and easy to fix.

Well done! I hope that sorts it!

Fantastic!

Richard

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Well, it’s not that simple. The short version is that I had I’ve had 4 davf at this point. #2 wasn’t fully embolized, so it quickly got much worse. I went somewhere else to have it finished. The super short version is that in less than two years I’ve had 4 embolizations, 1 stent placed in my dural sinus vein, a cerebral venous sinus thrombosis, and a pulmonary embolism. Somehow I’ve avoided amy permanent harm. Much of it has to do to how exceptional my doctors are.

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I’m sorry. I don’t mean to trivialise what you’ve been through. It isn’t “easy” at all. My view of my own needs is that I feel embolisation is a pretty do-able operation. I find it less terrifying than a craniotomy and compared to something like that, embolisation is something I, personally, would happily go through again if there was a residual bit of flow going on.

(I also wonder whether sometimes plugging one bit makes other bits spring up, so I’m more than half prepared to be talking to the doctor one day about a second or third DAVF, like you).

Taco, I hope you’re fixed this time and can get back to a bit of life as normal.

… this is what I was rather bluntly trying to say.

Did they have you in for the angiogram and do the embolisation in the one sitting or have you had to go in a couple or three times to get the embo done recently?

Very best wishes!

Richard

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Oh, I don’t mind. And I don’t feel you trivialized it. I just tend to minimize things on my end. It’s been a rough two years.

They do very thorough angiograms, so I’m put under GA for them, as opposed to being conscious. We opted that since I’ll already be under, and the catheter will already be in, that if they find something, they will fix it, if the risk of complications is low. I also travel to see my surgeon, so it saves a trip and cost and all of that as well, and is also safer overall instead of doing it multiple times.

We discussed the possibility of these embolizations causing new DAVF, which is possible, but they haven’t seen cases where it becomes chronic, or a domino effect. That’s why they chose to embolize these early. They were very tiny, but my history is that I develop DAVF very quickly, and they become large and dangerous in a short period of time. They were able to do the angiogram and embolize the 2 fistula in under 4 hours. Like I was saying earlier, the team I go to is beyond exceptional. They really are some of the best.

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My interventional radiologist put me under for a combined angiogram and DAVF embolisation in one go. I thought it was an excellent way to have surgery and he looked after me very well. We did it that way because he was confident as to the plan based on the MRI and as you say, not too great a risk that they would otherwise want my permission before going for it. I’m very inclined to vasovagal syncope, so that’s why we did it in one sitting for me.

Very interesting that you spring new DAVFs… very educational. I worry that I do, or might do, the same so very useful to know it is a possibility and to keep an eye on any new symptoms.

Hope you make a full recovery and life settles down a bit.

Best wishes,

Richard

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Is your procedure scheduled yet?

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Yup. First week of Feb. Gah.

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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.

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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

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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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