Sleepless in Petaluma

I have my report from my CTA. There is a tangle of vessels in the left frontal cortex and indicative of a pial arteriovenous malformation. Additionally in the opposite right frontal cortex there is a very subtle area of distorted peel vessels probably reflective of a form of breast of a second arteriovenous malformation. It is felt to be highly suspect for a second AVM. Feeding vessels for both of these lessons are anterior left middle cerebral artery branches.

Conclusion: Bilateral frontal lobe arteriovenous malformation, likely high flow lesions . Findings consistent with pial AVMs.
Tomorrow I meet with a vascular Nero surgeon.
New information I don’t understand. I’m awake for now, can’t sleep.

Karen,

Well it’s great you are meeting them tomorrow. Remember, no neuro expects you to interpret this stuff yourself, so just ask them to explain it to you slowly.

All the best,

Richard

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Karen,

My understanding of what you’ve written (and autocorrection has made this more dodgy) is that you have an AVM in the pia mater layer of your meninges, which is a bit like mine (mine is in the dura mater layer) in your left frontal lobe. And you have a bit of something on your right pia mater in the same way that looks like an AVM. Looks less developed on the right is my interpretation.

That it is in your pia mater means it is in the meningeal layer nearest to your brain. I don’t know if this makes it more difficult or more dangerous than a dural AVM but it might mean it is relatively on the surface of your brain, so maybe easy to get to.

I don’t really know what the high flow really means but mine was high flow. I think it means you’ve got quite a diversion of blood going on, so perhaps more in need of intervention.

I cannot possibly tell you what the implications are… talk to the doc about that… but it sounds like it is on the surface of your brain to me, not deeply rooted or deeply invading actual brain.

Hope that helps. And if I get this wrong, I do apologise. I’m just trying to encourage you a bit.

Lots of love,

Richard

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Karen,

Ive done a bit more reading… The middle cerebral artery (being the feeder artery to your AVM) is a giant of a thing and branches off the internal carotid artery. To this extent, the feeders for your AVM are rather internal, rather deep and I don’t know how that affects the treatability of your AVM. Maybe not at all, maybe a lot.

So… best thing to do is to talk to the neuro tomorrow and just see what they tell you about what your risks are, what they think they could do to treat it, or why it is best left alone.

I hope all of this helps. Lots of love,

Richard

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Hi, Sleepless!
I think you may have had your neuro visit/evaluation today, if I am reading your posting correctly. I hope it was fruitful, and your questions answered clearly. (Thinking you went to UCSF?). All this is scarey. I would agree with what Richard said. I will be waiting to hear from you.

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Hi Karen,

I’ll be honest, I havent the slightest clue what all that information means. Looks like @DickD has made the best attempt at trying to understand it, much better than I could do!

I just wanted to say, Im rooting for you and hoping your meeting has given you some answers and help understanding all this information and the implications.

Also that even if your neurosurgeon did decide he didnt want to touch it and craniotomy isnt an option - there are still other potential options to explore (embolisation, Gamma knife ect)!

Additionally if you haven’t had a Angiogram yet, this could potentially maybe be used to help identify the best course of action with better detailed scans of your AVM/s.

Love and hugs,

Corrine

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Today was basically an intake appointment. Doctor said he first needs to order angiogram before he knows anything. They will call me with appointment time.
Said it will be early in the morning and then 20 doctors will review it together and later that day we will speak of my options.

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@Karen62 Are you seeing Dr Lawton at UCSF? The angiogram will allow them to get a true look at what is really going on.
Hugs
Angela

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Yes. The angiogram is the “gold standard” for diagnosing AVMs.

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No I don’t get to see Lawton. I have to see a Vascular Neurosurgeon and that is Adib A Albla
Yeah I kind of figured I’d have to have a Angiogram first.

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It’s a good thing to have a multidisciplinary meeting, where doctors of diverse skills discuss what is possible for you. I would say that will give you a good, balanced view.

In regard to the large arterial blood supply to your AVMs, I don’t know that that is a problem. If we think about the Spetzler Martin grading, it is large, deep draining vessels that are a further complexity. Nothing about the supply side.

Very best wishes,

Richard

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O.K., Sleepless,

You changed your name from Newbie. I was wondering why I did not find responses or statements at your old address! I feel relieved!
The angiogram is the best procedure to demonstrate the size, location, and suggest the best options/ approaches to your AVM. I wish you well. :sparkles: :star2: :rainbow:

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Apparently I still am a newbie. Lol so that’s how it works. My Bad.
Thank you both. I’m sure you already know what a blessing this site is. I always feel calm after I troll around on this site. I may be all alone, but it doesn’t feel that way with all that you a text away.
I’m really excited about the special team of doctors I have surely been blessed.

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Karen,

Glad your having your angiogram and board meeting sorted for the next step :slight_smile:

It is amazing that they will tell you the conclusion of their opinions on the very same day of your angiogram and you get to talk to the differant specialists in person! Very exciting!

One thing i’d advise is writing down any questions/concerns that come to mind in prep for when you see them - can easily get mind-blank when the time comes or forget some questions.

Also writing it down can hopefully help remind you to leave thinking about it until later when you see them (though I know its not that easy sometimes). It’ll be great having all the specialists there with the scans infront of you and your list of questions to fire away! :raised_hands:

Best wishes and hugs,

Corrine

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Hi there, It sounds like you’re going to UCSF, is that right? I’d really appreciate it if you could later share with me your experience there. Because of my insurance I have to be seen in Albuquerque at UNM but hoping to get a referral to UCSF. They have amazing doctors there who saved my brothers life after a Traumatic Brain Injury. He has a great team of doctors.I’m wishing you well, doctors appointments can feel so stressful and nerve wracking. I’m new to all this too. I’ve going to Doctors since last April and they just barely found my brain malformation. Keep in touch!

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Hi, I will definitely keep you posted on my care at UCSF. I’m grateful that I live near San Francisco. I have read about other people who don’t have it so lucky as I do. I’m on Medicare A And B and also partnership for health.
Part of the team at UCSF has offered to study me on a yearly basis due to my dual AVMs.
Looking forward to sharing my story as others shared theirs.

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I have my appointment set for February 1st. Angiogram time. I meet at 6:30. 7:00 Angiogram. 2:00 I meet with surgeon.
So I’m excited and apprehensive.
Any pointers ?

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I’d say just relax and do as you’re told. They know what they are doing and will tell you at each stage what to do, what’s going to happen. If your experience is anything like mine, it is all rather leisurely, including the quite extensive waiting. But it all comes out fine in the end.

Whilst you can’t move during the scan, I was fascinated to see what was going on on the massive screen above my head, so I tried to look and see what was happening there (without moving at all!)

I found the lying still for a long time afterwards quite OK, though my wife was with me throughout that, and so some conversation helped to pass the time. She has the amazing skill of having something to say nearly 24 hours a day, so it came in handy for once! :grin:

Perfectly good to be excited and interested in what they find! Completely understand the apprehension, too.

All the best,

Richard

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Okay thanks for letting me know.
You’re funny about your wife talking. Did you get to see on the way to the brain?