AVM: Leaving it to nature

Ahh, now I understand what you meant. May I ask how old you are? I’m presuming that you are older and weighing the pros and cons of each.

Do you currently have any neurological issues that you are experiencing?

I am 52 years old and have been having migraines

Barrow is a good hospital
They have the most experience
It’s a whole brain institute

I read the study and it says the best treatment is microsurgery over embolization or radiation

Hi Dick, I guess I missed the most obvious answer-- get a second opinion. I never claimed to be the sharpest tool in the shed. I’ll do that.
Almost all of the threads here show me how potent instinct is when combined with wisdom. Experts on AVM causes, effects, treatments… seem to disagree a lot.
The issue of quality of life is central. If my seizures are controlled but I have no quality of life and I can’t recall what I ate for breakfast… it’s a big gray area. (pun intended) Thanks, Greg

@GregF these things are the most difficult decisions we have to make. When I first arrived here, I was very much in the space of “wait until the risks of leaving the AVM outweigh the risks of surgery”: when the numbers flip round the other way, that’s when I want to have surgery.

Equally, I went in for my first consult thinking I wanted a nice, constructive conversation with the consultant.

What I got was a rapidly declining condition and a consultant who was less talkative than I hoped for. However, he came across to me as an almost pure engineer or mechanic: very focussed on what he could do with the plumbing in my brain and sort me out. Less focussed on the emotions I might be going through or a keenness to answer my random questions.

My conclusion was that I needed the mechanic, the guy who was confident in his slightly unexpressed way, to replumb my brain. So that was it for me. But however each of us need to find the right comfort in what needs to be done (or not done) and how someone approaches it is (I think) very personal: what you need will differ from what I need.

Taking about it is a good thing if it helps you get to a decision.

Very best wishes,

Richard

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@zoom

Have a read of that bigger article I found (rather than the news headlines you found) and tell me if you understand it; these things are complex. Because I think the headlines you’ve read are a bit misleading and I don’t think the sample size is really big enough to make a decision on (if it was me).

Sending you my best wishes,

Richard

I have also read a lot of articles and I do not understand the way you sum up the issue, as surgery is considered the most effective way to resect avm, even if it might cause injuries that could never happen if you are lucky during your all life.
Most recent studies (TOBAS, ARUBA) say that medical management and surgery/embolization are quite equivalent in terms of risks.
The problem is that a « risk » occuring during a surgery may cause less damages than a « risk » out of an hospital.
I would have prefered my bleed happening during a surgery - no doubt conséquences would have been less serious…

I think the distinction that @zoom is trying to bring is that the professor he quotes takes the view that for those of us with an incidentally discovered AVM (rather than one that has already ruptured) treatment via surgery etc did not lead on to improved outcomes over a period of up to twelve years. ARUBA took a similar view.

However, in this study, my reading of the differential is that it was good for 4 years but started to shift the other way up to 12 years and the ages of people in the two cohorts were different. So (personally) I find the study difficult to use as a guideline for me. There were about 100 people in the study who underwent treatment and 100 who didn’t. Those are not big numbers in my book. There is a further complexity that 36 people in one of the groups died during the initial trial period of 4 years and 39 in the other group. I think most of those deaths were not attributed to the AVMs in the “conservatively managed” group but nonetheless by my reckoning, it reduces the numbers in your sample size even further.

I’m not convinced that the study is wholly useful in making the decision that @zoom is trying to make but that is what I read in the detail of the study that they have found. If I’ve misunderstood anything in the text, I apologise: it is quite complex to read.

I hope it helps to talk it through, though.

Best regards

Richard

I had 3 AVMS - Parietal, Cerebellar and Frontal (HHT disease). I still have 2.

My frontal AVM was surgically removed in 2013. There is no chance of a future bleed when the AVM has been completely removed. Removing the AVM completely is considered a cure and a bleed from it is not possible once it no longer exists.

That’s not to say you can’t have a stroke or bleed from another AVM (if present) or for other reasons.

I have no symptoms from my other two AVMs.

I’m choosing not to treat because the risk of deficits is too high for my personal comfort level.

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I am living evidence that surgery on an unruptured AVM can save your life. Mine was Grade 2, about 2 inches behind my right ear. If my surgery had been delayed even 6 more hours I would be dead now. That AVM had ballooned to the point of bursting…the surgeon said I would not have survived it.

I had very few symptoms: “chasing lights”, a mild ache, nothing more. But I almost died because of it. If I were you I would have the surgery to make sure I didn’t have a bleed. The results of a bleed can be too devastating, or even deadly.
Good luck.

This Response to Responses is for you wonderful Moderators,
The reason I’m curious about CGB is that it’s side effects aren’t as drastic as oxcarbazepine. I’d like to at least talk about it. I think the best neurologist in the world isn’t much good if I can’t ask him questions before signing on for a med for life. (Bear in mind that I can actually remember when docs made house calls with black leather bags. So I may be asking too much of a modern neurologist.)
I’ve been on this windy road for so long that I have some instincts that I need to factor into the equation. I’m not an expert but I do feel I should have a forum to ask questions when my gut tells me something might not be right for me.
Thanks you guys very much, This is an emotional issue that I’m struggling with. Quality of life and acceptable risks are nebulous and subjective. And you’re right that no two people are alike-- especially in the AVM/seizures context. Greg

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In terms of trusting the docs, you really need to find one you trust. Sometimes I look upon the way in which US medical practice works as a bit like the way dentistry works in the UK (we do generally have to pay for dentistry here, unlike most other health stuff) and that is when the dentist looks in your mouth and can see his next golfing holiday. For me, you need a dentist / neurosurgeon who is looking at your situation for you, not for what you can get them as their next holiday / car / yacht etc.

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Hi Merl, I really appreciate your in depth response. Definitely above and beyond the call of duty. I’m definitely not looking to get stoned so that intoxicant issue is not relevant and I’m definitely not going to get addicted or use it as a gateway to heroin.
You made a point that really hit home. My docs would kick up my dosage to opiates as a knee jerk reaction, not even considering quality of life. Ouch! That point you just made really rocks me. I may have to wrestle with that for a long time. In a sense I feel like I’m owed an apology even though I won’t hold my breath on that one. Thanks again, Greg

Dick, It’s really prescient the way you said that about dentists looking in your mouth and seeing their next holiday… People here (Phoenix) go to Mexico b/c the care is just as good and a fifth of the cost. People literally buy their own vacation from the savings.
I’ve always given neurologists the benefit of the doubt b/c of their great skills and training. But I’m having 2d thoughts b/c even his assistant is not returning calls. (and it’s not like I’m being a nuisance.)
I’d actually prefer a doc straight out of medical school that will return calls. Thanks for the goal of finding a doc I can trust-- good advice. Greg

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Hey Greg,
An apology?? From a Dr???.. Ohh, now that’s funny. They might have to admit they’re wrong…nah.

There is some evidence of what is known as the ‘entourage effect’. Whole plant cannabis has many cannabinoids, not solely THC and CBD. It’s the mix of these cannabinoids that gives the entourage effect. There are oils available which have individual cannabinoids ie solely THC or solely CBD. But in using these oils that entourage effect is removed.

Just like with any other medication, it really can be a case of trial and error to work out what best meets your needs.

Merl from the Modsupport Team

I don’t know the answer to your question, but I would have cancelled also. Keeping searching and trust your General practitioner to help you find answers.

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Yeah if the AVM keeps feeling eventually it’s higher risk that it will burst

Craniotomy they cauterize the veins
Then you can do angiogram in another hospital if you want to be 100% sure the AVM is gone

I can say from first-hand experience that i wish i would have had my avm in my right parietal removed before it leaked requiring emergency surgery to resect it leaving me alive but left side afflicted. Voluntary surgery may have left some issues but i would likely have recovered better.

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Hi Merl, Thanks for the thoughts. I’m trying CBD but I don’t know if it’s a blend. It sounds like I need to do more research. Greg

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