Second opinion - wait for angiogram?

All,

I was diagnosed with an AVM a few days ago as a result of an incidental finding. The surgeon briefly discussed treatment options, mainly around GKS. But mainly he discussed an angiogram. I had a couple of general questions about angiograms since I want to build up more context:

I’m seeking second opinions. I’m looking at places like Barrows, NYU and Mayo and am building up a list of specialists. I’ll probably speak with about four or five. But I don’t have the angiogram scheduled until late-July. Should I wait until the angiogram before getting second opinions? Otherwise they are likely to be making decisions with incomplete info?

Also, I was offered the option of catheter embolization at the same time as the angiogram. I declined, but am now reconsidering. I was asked on the spot so I felt a bit rushed. I am interested in hearing other people’s experiences. (Of course, I am not asking what I should do or seeking medical advice on this forum.) I don’t know how many people with unruptured AVMs have NOT had an embolization – I don’t think it’s many. On the other hand I don’t know how careful I should be in choosing the doctor who does it, and nor do I yet fully understand risk vs benefit. I didn’t feel I had time or mental space to go through this during the appointment.

Any thoughts appreciated. Thank you.

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Hi.

I think the primary consideration in the US is choosing who does the work. The institutes you mention are world class, as you say. You should have every confidence in their recommendations.

I’m in the UK, where everything works very differently and I was only offered the catheter angiogram. From a wholly personal point of view, if there is a way to have neurovascular surgery, catheter embolization is the way for me. I came away with a 6mm incision at the top of both thighs (I think the man went in both sides) and if that’s all there is to it, I think that is fantastic. It isn’t a wholly straightforward procedure: there are similar risks to other approaches and it takes longer to feel back to normal than you think (or it did me) so don’t think of it as trivial but honestly I look upon it as very very doable. My doc suggested that he might need two attempts at blocking it off fully (maybe that’s why I ended up with two holes) but he got me in the one sitting. However, having gone through it once I am of the opinion that if I needed to go through it again, it would be eminently doable for me. I’m not the slightest bit good at surgery or even watching ER programmes in TV, for context.

So I’m keen on embolization.

It seems a pretty rare method in the US. Most US doctors seem to use embolization as an adjunct to open surgery. There are more people on here from the US reporting embolization-only but it still feels in single digits. To me, that indicates your doc is connected to current medical practice etc, which is good.

Do the angiogram prior to getting a second opinion? I’d say so. So long as your current doc is of good standing, getting the angiogram will definitely help others to form a reliable opinion. There are risks to the angiogram – principally of the guide mechanism rupturing an artery – but 99% of the brain AVM patients here have gone through the procedure successfully. There’s also a risk that you might not react well with the contrast material but I’d expect the doc to look after you in either regard if they come to fruition.

Hope these thoughts help. Happy to show you me stressing about all of this in exactly the same way and coming out the other side if it will help you. Feel free to ask anything.

Very best wishes,

Richard

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Thanks for the quick and very helpful response. That’s very interesting. Actually the surgeon seemed to be presenting embolization as an adjunct to other things (GKS or craniotomy), so I think it was ‘conservative’ in that sense. It was hard to tell, it was a first appointment and a bit rushed, and my sudden realization of “oh ----, this is really serious” made it hard for me to process everything he was saying.

There’s an interesting video by Dr Johanna Fifi, of Mount Sinai School of Medicine in NY, which discusses embolization as the sole treatment, with some very decent success rates. There are various sub-types of embolization treatment, it seems. I don’t know if I’m able to post links but it can be easily Googled. The video discusses various studies and reports. Embolization with the goal of obliteration is different from embolization with the goal of reducing size and/or risk, it would seem.

The trick with going off the beaten track would be getting insurance approval. The first step would be to find a surgeon willing to have the conversation.

One thing that concerns me about calls with individual surgeons is that each will tell me something different and I won’t have the knowledge (obviously) to sort the information out. I would ideally want people of various specializations and interests to talk directly to each other, and only then to advise me.

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The multidisciplinary approach is exactly what goes off in the UK, so my meeting with the consultant interventional radiologist was post MDT and I was presented with embolization as the recommended plan, the only plan. In the US, it strikes me, that patients are required to become expert to do the same window shopping with neurosurgeons that one would do with a house, a car, or even clothing. Like you say, the idea that this is a market where you are the person making these decisions is quite astounding. I do think the major practices that you’ve listed (Barrow and Mayo are definitely top, top places) may give you that balanced approach. Individual neurosurgeons outside of these practices seem to me to sometimes offer only what they can do for you. So you do need to take the views of multiple and then decide who is approaching this from your beneficial point of view and who is trying to get paid by your insurance.

As a brand new user, you probably can’t post links but that will change once you’ve hung around a while and read other people’s stories.

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Is this the video you mean?

For info, I had a single PHIL embolization (not Onyx) and it was done in the UK just over 7 years ago! Whether multiple approaches were taken in the one operation, I don’t know (but I did have two holes, so maybe!)

I’ve watched this video and other than the description of catheter tips being left in situ (which I think is particularly relevant to Onyx, I think it goes off very quickly) being rather disturbing, overall the discussion in the video is really interesting.

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Yes that’s the one. It looked interesting. I need to re-watch it properly to understand it.

Embolization seems (to this layman!) to be considerably safer than craniotomy, and if successful achieves obliteration much more quickly than radiology. So I will definitely look into it. I’d be interested in hearing other people’s experiences in the US with the procedure (aiming at cure) – who did it, how they found it, etc etc.

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The two people I can think of in the US that I know or believe had embolization only are @mike_az_21 who was treated at Barrow and @tacos4life who was seen in NY, NY or Rochester (I forget where). Mike appears to have a regular AVM which bled prior embolization and Taco has a DAVF like me. It seems a bit more common to me to have a DAVF embolized only.

One of the guys talks in the video (and he believes Barrow would be the same but I disagree with him) that for an accessible AVM, open surgery / resection would be the approach most places (including Barrow) would take and embo only frowned upon. I get the impression that Barrow is doing more embolization for cure than they were but I can’t give you names to back up that claim! I’m just going on gut feel of reading stories for the last 7+ years.

The video is definitely worth a rewatch. And feel free to ask anything. I’m happy to try to explain what I think I’ve seen on here as indicative of current practice, risks etc.

It is interesting to me that one or two of the docs feel resection is more likely to fix seizures than blocking off of the AVM but it will depend on (as one put it) whether the seizures are triggered by “starvation” of blood flow to places beyond the AVM or by some other cause. One of the effects (and there are probably several effects) of having an AVM is that the blood flow takes a short cut back to the heart, reducing the pressure available to ensure flow at places beyond that shortcut.

I think you suggested that your doc so far is suggesting either embolization+resection (and the embolization is used simply to reduce blood loss in that case, to simplify the procedure) or embolization+radiotherapy. In the latter case, this is discussed a little in the video: i.e. that embolization has a role where there is a largeish void to fill and therefore reduce the work that the radiotherapy has to do, but that doing the embolization makes the planning for the radiotherapy more complex. I’m encouraged by the Mount Sinai NY comments on solving the MDT conundrum. So my feeling that the major practices in the US may use a multidisciplinary approach is a little validated.

It’s very late here, so I’ll catch you tomorrow. Do continue to talk about anything that comes to mind. I hope others will also offer their experience, not least Mike and Taco.

Best wishes,

Richard

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I believe having the results of the angiogram is best to assist with further opinions as it paints a better picture of the location of the AVM & any potential complexities… one thing I’ve learnt here over the years is that the angiogram is the golden standard when it comes to AVM’s.

I had a follow up MRI a few years back, which reported my AVM had returned after craniotomy, however an angiogram was requested by my neurosurgeon at the time & it was discovered that the MRI scan was incorrect - the importance of the angiogram… I hope this information helps… God bless!

It’s interesting to see the different institutions’ opinions. Mount Sinai Hospital in NYC (where the aforementioned Dr. Fifi works) seems to be a center in the US of embolization treatment. Its website says: “Embolization is the most common treatment for AVMs… Sometimes, we follow embolization with surgical resection or radiation therapy.” (emphasis mine)

Mount Sinai also invited Dr. Rene Chapot, a world-renowned expert on endovascular techniques who is based in Essen in Germany, to give some webinars to its surgeons. He has another webinar, which is on Youtube, called “Curative Embolization of Cerebral AVMs”. So it definitely seems to be one of the places in the US that will at least consider embolization treatments.

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Get views from the major practices as to what they believe is appropriate for you. While I’ve had an embolization procedure and it seems to have been very successful, your AVM and its situation is different from mine, so please don’t let me lure you in any single direction.

I agree Rene Chapot gets strong mention from our European neighbours. Since this is a mostly Anglophone community, I guess we see less mention of him than if we all spoke the same language. I don’t remember coming across Dr Fifi’s name here before you’ve mentioned her but I’m sure she’s at the front of the curve, as embolization-to-cure does seem to be less common in the US.

Best wishes,

Richard

Thanks. Yes, I will absolutely get multiple opinions from the big practices.

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Thought I’d chime in since I got the notification for my user name

I have full faith in BNI(Barrow Neurological Institute)

If you can, that’s who I’d consult with & take their word as fact. To me, they seem like they are the front runner of AVM surgeries/procedures

Mayo is way at the top of the list, but for other brain abnormalities

I did have a hemorrhage, they went in for one embolization & took this thing down. Between their expertise & just luck(I guess) the first embolization took 100%.

But, it’s not just my “luck” that makes me think so highly of them. It’s how I was treated & the expertise of their medical staff also.

Mine is/was also a dural arteriovenous fistula(dAVF)

If they found this on a CT or a MRI, you will need an angiogram before anything officially becomes fact. MRI’s are still not accurate enough & don’t give them a clear view of the feeders, etc.

That’s just my opinion from personal experience. Unfortunately there are no guarantees in any of this.

Definitely wishing you the best!

Thanks. Their second opinion service seems highly-rated. Although I note it only costs $100, which I can’t imagine buys much of a surgeon’s time. I assume that would be a gateway to a more in-depth discussion, and hopefully consideration by a multidisciplinary team.

Anyway, Barrow is definitely on my list… but now I need to wait for the angiogram, which is a few weeks away.

I much appreciate all the responses.

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I assume it’s a lever to new business for them, a loss-leader, so a very attractive way to get a second opinion. I assume that if you then wanted to follow up with them on that, your insurance would be called upon!

Hi Everlasting,

I’m in the U.K., ruptured occipital AVM five years ago. Had gamma knife which failed due to my AVM having high flow fistulous components. I’m now considering microsurgery and / or embolisation.

As you were offered embolisation during your angiogram I assume it’s a smallish AVM?

I think I you were correct to decline immediate embolisation as you should share the angiogram with other surgeons and gather opinions on the safety profile of your embolisation. I would take your time learning and consulting and not rush to a decision. Some surgeons may want to perform a superselective angiogram to get a more accurate picture of the anatomy of your AVM….but hopefully there will be enough for them to interpret and give an opinion.

Embolisation has traditionally been reserved as a curative treatment for small AVMs (SM 1/2) or as an adjunct to de-risk microsurgery on larger AVMs by eliminating feeding arteries to reduce the risk of intraoperative bleeding. However more recently some centers are developing expertise (with help from more advanced catheters, new techniques and better embolic agents) at treating larger AVMs.

My neurosurgeon is a very scientific judge of all of the published research, and says that as of today embolisation as an adjunct to microsurgery has higher efficacy with similar risk profile to embolisation alone, so he rarely tries to cure with embolisation alone above SM grade 2. Having said that, each case is different and we are now discussing an attempt at curative embolisation even though mine is grade 3/4, leaving surgery as a backstop. In my case the surgical approach is very difficult and he feels that we will need to embolise quite aggressively anyway to derisk the surgery. The more glue used the more this can present later challenges for the surgeon as the AVM becomes less mailable and more like a stone. So it’s a balance between derisking the blood flows for surgery and not giving the surgeon a more difficult situation.

I’m evaluating that option here in London and also speaking to Rene Chapot in Germany who has pioneered new approaches to transvenous embolisation and appears to have a lot of specialist experience in this procedure. His lectures are worth watching on YouTube as helpful context for embolisation procedures. I noticed surgeons from some of the US centers you mentioned watching and asking him questions.

Embolisation of a high flow AVM in particular will cause an abrupt change in blood flows which requires very careful post op management of blood pressure. I would only have the procedure at a center treating decent volumes of AVMs in this way and would want to be satisfied that the protocols around this are very well established.

All the best
Jonny

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For sure angiogram as that determines your surgical options meaning grade 1-3 Doctors have surgical options but grade 4, the worst most won’t touch. I visited a couple of the hospitals you mentioned but ended up going to Kansas University med center. Full 1/2 skull craniotomy with new incision type that left all my hair but the around incision lines ( which hair didn’t matter at that point). My 1st photo should still be on here, and I walked out of hospital on morning of post op day 5. Lots of staples that had to stay in for 3 weeks but doing all that and not passing away like my father did from straining is better. I have a seizure disorder but it’s not bad but all that caused way early retirement (age 48), and in disability. However, actually today Is 5 years avm free anniversary

I think I can vouch for this!

I don’t really see why an embolization would have any more immediate or disturbing sensations than doing a surgical resection but I can vouch for a high flow being closed off in one go being rather quite surprising in its effects.

Ignore my Chapot question a minute ago somewhere else. You’ve answered it here.

Very best wishes both,

Richard