Venous hypertension in active AVM

Types of Avm's CCMs and DVAs
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I was diagnosed in August 2012 with a right temporal lobe AVM which was a very low grade. 7 years later and 2 beautiful little kids, the cerebral angio showed no change in the size/grade of AVM, but increased headaches has been found to be a cause of venous hypertension. It’s been a year since we found out that pressure has built up in the brain, which according to my doctors are a result of the AVM and hormonal changes due to pregnancy and childbirth which may have triggered the numerous micro bleeds in the last few years and the subsequent pressure build up. Prognosis is I need to have embolization surgery to relieve the pressure which will “cure” the AVM.

Thing is, I can live with the AVM, but understand that the venous hypertension needs to be addressed. I’m struggling to reconcile why the hypertension cannot be treated without having to treat the AVM. I understand that my thinking is treating the symptom and not the cause, but like I said, I’m ok with that given the risky nature of embolization or a craniotomy and somewhat. The hypertension is what’s been causing the recent surge in micro bleeds and severe headaches. However, somewhere along the line I wonder if my docs saying it cannot be done is because they want to treat the cause (which I fully understand, but they can’t seem right now to understand where I’m coming from).

Has anyone had the same issue? Or know if venous hypertension in the brain (regardless of cause) can be treated non surgically, i.e. medication? I’m trying to get as much info as possible before I need to make this decision. Perhaps in other countries where AVM cases are higher, there may be another way to deal with the hypertension?

If you’ve gotten this far, thank you for taking the time out to read this :blush:

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Suraya,

Hello! It’s good to hear from you!

I’m not quite sure whether I quite understand what you mean by venous hypertension… it is a term more often used related to the same in one’s legs rather than the brain (and, I expect, has a different cause). In your case, I think what you’re saying is that you’ve got high blood pressure in your veins, induced by your AVM. I’m pretty sure this is exactly what AVMs do and the treatments that we know about for brain AVMs are surgery, embolization or radiotherapy. As such, I can’t offer or suggest a further one, as these are the only ones I know of.

What are your concerns about these modes of treatment? I understand completely that each has its own risks but if you’re having bleeds already, you also know that leaving it alone brings very similar risks.

You’ve mentioned that embolization has been recommended. What worries you? I had an embolization for my DAVF and I have to say I’m very glad I did. I felt that my AVM was developing quite quickly and I had a number of veins on the outside of my head, where the arterial pulse was pumping (and I could actually feel it – it was strong enough to lift my fingers off my head – I also managed to record the whoosh of the blood surging though the DAVF into these external veins)

This is a sign that the blood is really quite high pressure in my veins. As far as I know, veins will simply stretch with the increased pressure, impacting the brain around them and run the risk of bursting or if the flow is “retrograde” (i.e. going the wrong way along the vein, being high pressure) can also result in a nett zero flow and necrosis (death) of the brain tissue normally drained by the affected veins.

These are the risks which I used to set against the risks of the surgery.

When I had my embolization, I came away with the tiniest cut in my groin – about six millimetres – absolutely nothing. There are other effects of embolization above this 6mm cut but I have to say that if I found I needed further surgery, I would have no qualms about another embolization.

So do tell what it is that you are worried about and maybe I can help in that way.

Sending you my very best wishes,

Richard

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Hi Richard

Thank you for responding and sharing your experience. Quite right in terms of what has caused the pressure in the brain, but the term venous hypertension is what my doc called it. The AVM size has remained unchanged though since a hemorrhage in 2013 and now the micro bleeds.

I’ve used the same argument to get to the place of agreeing to embolization at the beginning of the year, but Covid-19 happened. My biggest concern is the people I’ve spoken to who’ve had the procedure have ultimately had a good outcome but not without massive complications at first. The neuro radio doc had also not really given me much comfort by saying there’s a 50/50 chance of survival in terms of what he’s been exposed to as well as chance of the glue shooting off to other parts of the brain.

The new doc I’m going to visit, from what I’ve been told, has the opinion I should have a craniotomy. So the fact that 2 of the leading surgeons here have different approaches isn’t really putting me at ease.

I was really hoping that the pressure itself could be resolved without embolization seeing as though the AVM size has remained unchanged and the pressure build up is what is causing the increased headaches and micro bleeds.

I’m glad to hear your experience was a positive one, and I’ll hear what the new doc (prof actually) has to say, and ultimately will need to weigh the pros and cons, but I also feel that had there been no pressure build up, I could still continue with the AVM as is as I’ve been doing so far.

Guess there’s more questions than answers at this point, notwithstanding the fact that they won’t know if another embolization will be needed until the first one is done. I really was hoping the pressure only could be treated using medication. Whilst I know quality of life may improve and risk of bleeds decreased or even removed, I am afraid of how long I’ll be away from my kids who are both below age 5.

Eventually I’ll reach a decision but right now I’m very unsettled about it.

Thanks again for the share and advice. I hope the next doc visit will give me clarity and I’m able to make a decision just as you’ve been able to.

Suraya

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Suraya,

Without knowing a lot more about the specifics of your AVM (and needing to be trained as a doctor!) it’s impossible to understand how much of the risk associated with a bit of glue settling where it should not is due to the type of AVM you have or the competence of the doctor! It is fair to say that the risks I was given for my embolization included a bit of glue migrating to where it shouldn’t, or the catheter tearing an artery, so these are normal risks associated with doing an embolization. The only real question is whether your AVM is especially high flow or especially difficult to treat that the glue is in some way more likely to flow to where it isn’t desired; or that your doctor doesn’t have a very broad experience yet.

From this point of view and given what you’re saying, I think continuing to look for a doctor who gives you confidence that they can do a treatment for you that they are confident in doing / has not too many risks is the right thing to do. None of this is risk-free, though.

Do let us know how you get on, though. We do have one or two others in ZA, if I can remember who they are… :man_facepalming:

Very best wishes,

Richard

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Hi Richard

Thank you for replying so promptly. I agree, I need to have a doc with more experience in this and the prof I’m seeing at the end of this month is supposed to be the most experienced.

I sincerely appreciate the advice and share. It’s helped put some things into perspective so I’m looking forward you this appointment.

On a side note, the neuro radio doc, whilst trained under the doc previously involved with my case, is fairly new to this type of embolization as he previously worked in cardiac and migrated over to neuro (according to him the move is because there’s more risk associated with neuro and margin of error is low, so it’s exciting) :woman_facepalming:t3:

Will keep you posted.

Thanks again.

Suraya

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:rofl: :scream:

There are some thoughts that doctors really ought to keep to themselves, aren’t there?

Anyone here would tell you that you don’t want anyone practicing on your brain, so it is undoubtedly much better to try to find a more experienced surgeon.

The other thing to explore with the professor will be whether they feel that craniotomy or embolization or radiotherapy is best for your case (and whether he or she is best placed to make the recommendation). In the UK, this is usually done with a “multidisciplinary” meeting where doctors from each speciality are invited to review a patient’s case and agree between them which route is preferable. This doesn’t always seem to be the case in other countries and sometimes you’ll see a neurosurgeon and they will recommend surgery, see an interventional radiologist and they will recommend embolization or see whatever the radiosurgeons are called and they recommend gamma knife… each according to their specialism. Somehow, you want someone who you trust and who gives you a balanced view of what is best for you.

Good luck with your appointment!

Richard

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Dear Suraya,

Hope you are well and thanks @DickD for inviting me to get onto this thread.

@Suraya, are you in South Africa? If so, where are you based and who is the professor you will be seeing. I don’t have an AVM, rather a DVA and CCM in close proximity to each other in the right cerebellum. I have been advised by an Interventional Radiologist that mine is best left alone, even though I have had a previous bleed. I have daily headaches, but am learning to try live with it.

I certainly wish you all the very best for your appointment and please keep us posted on the outcome. We certainly hope that you find the right specialist to best treat your AVM and underlying issues.

Best of luck and much love,
Debs

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Suraya’s bio says Durban.

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@Suraya Just to chime in and to repeat what @DickD said about drs practicing on our brains. I see the founder and head of neuro radiology at Stanford and when I asked him how its determined what treatment for avms esp the type like mine and Dicks we have DAVF he told me it was like artwork and his many years of experience. So at that point I decided I didnt want any young neuros working on my brain. Then I asked how many strokes and deaths he had under his care and he said none and sadly I was to be his first and not really his fault since I was really recoverlng from a bad unrelated CVST stroke -
Anyway There are many risks - even though they maybe a low probability but the it goes up with a dr that does not have the experience. You have every right to be with a doctor who has more experience. I dont even let the Student drs give me botox shots in the pain clinic-

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Hi Debs

Thank you for reaching out.

I’m going to be visiting with Prof Taylor in Cape Town. My AVM was a very low grade when I first diagnosed, so it was best left alone, even after the hemorrhage. It seems now due to the pressure build up, they’re wanting to embolize. I’m use to living with headaches and can still function normally, but some headaches are debilitating for that time. However, I’m not keen on surgery or interventional procedures if the pressure build up can be dealt with through medication and given that the AVM hasn’t changed in size.

Thank you for your support. I really do appreciate it and only when hearing of others experiences, it puts things into perspective as well sometimes.

Suraya

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Hi Angela

Thank you for reaching out. I share your sentiments exactly. Hopefully my appointment with the new doc goes well so I can make an informed decision, but definitely not willing to be a guinea pig or rack up another case so to add to the doc’s experience.