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AVM Survivors Network

Re-introducing Myself

I haven’t been posting since that very first time months ago. Everyone here had been so helpful and reassuring. Should you be interested, here’s an update:

I did the MRA and angiogram I’d mentioned a month ago. They found an unruptured AVM in my brain. I had hoped it could have been dealt with via targeted radiation as the neurologist originally hoped but it looks like the best solution is a stent with something called a Pipeline Embolization Device.

There’s a bit of reluctance in me to research too intensely about it as I know it would probably ratchet up my anxiety trying to interfere with all the holiday fun I’m trying to have.

So in the meantime, I’m trying to adopt the “Keep Calm and Carry On” attitude as my procedure isn’t until February. I’m seesawing between being hyper aware of anything that feels like a symptom of anything and zealously scheduling my life, scaling back my exercise goals so I wouldn’t worsen my condition. It’s like waiting, but not sure what I’m waiting for, yet waiting all the same. I’m either frantically working on my endless lists of To-dos or doing nothing in an attempt to stay zen.

And that’s me in a nutshell.

Anna

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I see you’re in NY. What region, and who are you seeing?

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Waiting is always difficult for me. I had a bleed in May of 2016 and Gamma knife in November 2016. Then more waiting…27 months after gamma I got the all clear. I’ve never been a good “waiter”. I did find that I became much more accepting and took the attitude of what is to be, will be. But that took time and effort! February will be here before you know it!

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Hello,
I’m in NYC and seeing a doctor in NYU.

I go there also. That’s who treats me. I’ll be there again in 2 weeks. Raz, Nelson, or Shapiro? They are exceptional.

Yunnieman,

How wonderful! You’ve found a Network member nearby, should you desire to communicate even more personally!

I can’t even imagine the anxiety you have, having to wait for your procedure. All I can say is, focus on a good outcome, putting an image in your mind of yourself, AVM-free. Meanwhile, use the support of the folks here. In doing so, you serve yourself AND those of us who wish to be useful.

Lifeisgood

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Hi, Anna
The waiting for any type of procedure is the worst part. My AVM ruptured very suddenly, so I did not have to wait. God bless your strength and ability to stay calm. And stay off the internet(except for this group, of course). I wish you all the best. We have all dealt with our AVM’s differently because each one is unique. Don’t forget your black-eyed peas on January 1. I will be thinking of you. Vicki

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I’ll reiterate that NYU Langone is one of the best places in the country, if not the world, to have a cerebrovascular issue treated. The doctors are genuinely good people and and highly skilled and knowledgeable. I came to them with a complicated issue that was made worse by a different hospital, and they were able to fix it without causing me any harm. You’re in good hands.

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That’s actually good to know. I have Raz, referred to me by my regular neurologist so I didn’t know much. He did my cranial angiogram to map my AVM first and I was reassured with how on ball he was with everything.

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.

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

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.

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

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.

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

Is your procedure scheduled yet?

Yup. First week of Feb. Gah.