Failed embolization

Types of Avm's Pulmonary AVM, Heart AVMs & HHT
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Hi everyone

I’m new to the group, I live in North West England.
I was diagnosed with a pulmonary arteriovenous malformation in November 2019 and treated in February 2020.

All seemed well, I fell pregnant in July and my follow up appointments were delayed for a good while as CT isn’t done while pregnant and breastfeeding.

I had my CT in February this year and it appears the embolization failed, my avm is still present and filling yet slightly smaller.

I’m just waiting to hear back what’s next.

I’m a bit nervous about it and unsure whether that’s because I’m worried about the procedure and that they’ll say leave it as it is.

Has anyone else had a failure with embolization, what happened next?

Thanks in advance

Bec :blush:

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Bec,

Hi. I had an AVM in the back of my head which was treated with embolization. When I saw the doc, he indicated that he may need one “approach” to it or he may need two. Fortunately, in my case, I needed just one.

I’d say it is perfectly common for embolization to be undertaken in more than one step and this is the reason for the follow up angiogram: to see how effective the first pass has been and to see if there is any residue to be tidied up. So try not to think of it in terms of a “failure” but as step 1 of hopefully 2.

In my case, I felt that the first embolization hadn’t been successful and it was me lobbying the doctor for a third scan but in my case, it was simply a matter of being patient: each scan showed that my embolization was effective (but I can tell you it is perfectly possible to worry about this stuff even when one is all fixed!)

Hope this helps,

Richard

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Thanks Richard that’s a good way to see it.

I didn’t know it could partially work.

I watched it vanish during the procedure and thought job done.

I’m glad you are doing okay and haven’t had any recurrent issues.

:blush:

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Yes, I’m fine.

It took a long time for me to be convinced I was all fixed and honestly, I looked upon having a second embolization as not too difficult a thing to go through. I had been warned by my doc that he might need two goes at it, so I was in the right mindset from that point of view but I’m not very brave at all when it comes to this sort of thing. I was more than happy to have a second go (because I didn’t feel “fixed”).

I think much of what we go through is what we mentally put ourselves through. If you can go easy on yourself that way, you’ll do much better than me!

Very best wishes,

Richard

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I can understand that completely.
I feel like it’s something I don’t want left inside me, I have four children and the thought of having a stroke or worse and not being there for them is so overwhelming.
I know that must sound dramatic, I feel like a bit of a fraud.
It’s like health anxiety is in overdrive.
I have so many questions.

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Hi, and welcome to the board

Pulmonary - meaning it’s in your lungs? < clearly as you can tell we are no physicians here.

Mine & Richards were/are fairly similar. Aside that mine ruptured & caused a hemorrhage stroke. I’m fine now - thanks to today’s medical science & by some other act of “luck”

If it is in your lung/s it will be approached quite differently, I’d imagine

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@BeccaB

Sorry I didn’t see you latest reply. None of what you’re going through is being over-dramatic: it hits us all the same way. Whatever questions you’ve got, just ask. It’s what we are here for.

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Hi Mike

Thanks for the reply.
I’m glad you are doing well now.

Yes mine is my lung.
I managed to speak with the consultants secretary last week and she was able to tell me that the avm is almost half of its original size now, it was initially 10 x 9.5 and is now 6.5 x 5 so I think this must be good news?

I did read anything over 2 should ideally be treated so I think there may be more attempts to fix it.

How have you been, do you have regular follow ups or anything?

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Thanks so much Richard.

Do you have follow up appointments to check for new or reoccurring avms?

From my understanding avms can occur between any joining artery and vein, does that mean we are more likely to get another?

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@BeccaB

Hi. I don’t have any follow ups planned. My surgery was in 2017 and, so far as I know, it should be once done, fixed. However, if it isn’t all got, the AVM will continue to “recruit” vessels again.

Whether you’ll have any repetition or other AVMs depends on a number of factors, as far as I can tell. (I’m not a doctor, so I’m going on what I’ve seen people post here and my own feeling for how often I’ve seen things mentioned…)

If the AVM isn’t fixed, it will tend to expand. This seems quite common.

Most AVMs are considered congenital, which means were formed in the womb, but there are things like a propensity to proliferate vessels that affects a few people and there are a few genetic conditions that bring AVMs as part of their baggage.

With regard to you, insofar as you have a PAVM, I think there is an increased risk that the underlying driver is a genetic condition. We have very few PAVM members here – as a condition it is rare among rare – but a decent proportion seem to have HHT as a genetic condition. So I created the pulmonary, heart and HHT group for such people to find common ground.

HHT tends to bring multiple AVMs in various places throughout the body. It is worth getting some genetic testing undertaken to rule it out if there is any hint of you having multiple AVMs or any family history.

Otherwise, if that’s not an underlying driver, it is most likely that if your AVM can be embolised 100% or otherwise got rid of, you’ve just got the one and once fixed, I’d hope you can put this all behind you. Most people here have just one AVM that was formed when they grew in the womb.

I may have frightened you more than helped but this is what I believe by reading everyone’s story here for quite some time.

Very best wishes,

Richard

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Def & unfortunately agreed with Richard - mostly

My neurosurgeons told me it’s a 50/50 - that it’s formed from birth Vs over time & no actual underlying reason - and, even then it’s a hit or miss

Like in my case, they told me that I had multiple bleeds throughout my lifetime(go figure) - until the big one that took me down to my knees - that’s when they actually found the “thing” & embolized it

I don’t know much at all about AVM’s in any other locations of the body, or rate of success of embolization - wish I was of more help

Me & Richard alike, no follow ups - until I/we feel necessary(we/I feel like there is a problem) < I was just in ER a month ago or so with stroke like symptoms. But, yet again - I checked out a ok

Definitely wish you the best, you might want to do a bit of research from your end - AVM’s are a very rare & tough condition for physicians to deal with - at least, from what I have learned - but, I really don’t know how the health care industry works on your end of the world

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Thanks Mike

Sounds like you have had a tough time. I’m glad you are checking out all good.

I’ve had testing, not HHT fortunately. Mainly because of the relief with my children not having to be tested,at risk etc.

My consultant seems pretty good. Although they are always just waiting for input from someone else. Seems to be the worse part of having something rare, waiting for information to come.

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Can I say, I this is fantastic news! It seems to me that the odds of HHT with a PAVM are nearer 50%.

I’d hope that if you can get your AVM closed off 100% that really could be the end of the story. We do have a number of members who’ve had their AVMs a long time (@randombeggar and @TJ127 come to mind but I think there are several) where repeat treatments have been necessary, so you have to think we’re not 100% in the clear but :crossed_fingers:t3: it’s a rare thing that might bite at us again some years into the future.

My own plan is similar to Mike: put it out of mind until it presents with something bothersome, then get checked out if need be. Extremity people (those with an AVM in a limb) seem to have a constant battle with their AVMs but my personal theory is that that is perhaps due to a lot of movement affecting any embolization.

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Hi there @BeccaB. Reading through the thread it sounds like you’ve been through the ringer! So as not to reduplicate what’s already been said and sound boorish, I just wanna say, “fight on, warrior!”. You’ve been “on the ropes” but not knocked out, to coin a boxing phrase. You’ve been to the edge but not fallen off the cliff, remember Aerosmith “livin’ on the edge”? And finally, you and many of the members still present in this group have been afforded another chance, whether by Providence, chance, or luck depending on your persuasion, to make a mark and a difference the next person in your unique situation stumbles upon. So fight on warrior. Your race isn’t over yet, but you’ve hit another leg in the journey. Blessings as you continue, grace & peace as you go!

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And I draw, me, not anyone has to, but I draw encouragement and strength from the Christian Scriptures, especially 2 Corinthians 4:8-10 which reads “We are hard pressed on every side, but not crushed; perplexed, but not in despair; persecuted, but not abandoned; struck down, but not destroyed. We always carry around in our body the death of Jesus, so that the life of Jesus may also be revealed in our body.” Hope that and others in your life and on this message board bring you hope. We all need it these days! Blessings as you continue, grace & peace as you go!

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Truly wish u the best lady

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Thanks for your reply.

Much appreciated.

Hope you are keeping well too!

Stay safe :slightly_smiling_face:

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