AVM: Leaving it to nature

I was recently diagnosed with a Grade 2 AVM in my right parietal lobe. I was having symptoms of nausea, urinary incontinence, headaches, lightheadedness, “stroke” like feeling, and memory issues. The MRI showed that there is no hemorrhage and the surgeon recommends surgery. My first doctor felt that my symptoms are unrelated to my AVM since they rarely have symptoms unless they have hemorrhaged and my second doctor says the symptoms do relate to the AVM. I had scheduled a craniotomy, but cancelled it after doing more research on the success rates of treatment vs medical management. I have not found any scientific research that shows surgery on an unruptured AVM will decrease the risk of stroke, neurological symptoms, or death. All of the research shows the complete opposite. Some studies show that chance of neurological symptoms, stroke, or death is 3x that of untreated AVMS. I would love to see scientific evidence that unruptured AVM treatment actually works. If anyone has any evidence (scientific peer-reviewed, published research), please post. I am confused.

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Well, I can’t find you any scientific stuff but I’ll ask TJ in our @ModSupport team if he’ll comment / be able to reference some material and I can vouch for my own situation.

For me, I was getting symptoms from my DAVF (specific type of AVM in the dura mater) like initially I could simply hear the rough flow of blood through my sigmoid sinuses where it was discharging. After about a year of hearing it, it started to make me feel dizzy and a bit odd towards the top of my head: walking or being driven was mildly unpleasant. As it progressed, the dizziness got worse, to the extent that lying normally in bed meant that the room was spinning or tipping, so I ended up propped up on a pile of pillows to lessen the blood pressure when sleeping.

Overall, I felt it was clear that my AVM was developing and I had to wait at least 4 months for an embolization procedure to block up the abnormality. I was very concerned that having to wait that long could lead on to it bursting while I was in the queue or that a much more invasive surgery might be required by the time I reached the front of the queue.

Read around here and get a feeling for us, your real-life peers as to who had symptoms and our success or otherwise in getting fixed with either surgery, embolization or radiotherapy. I don’t want to suggest to you that intervention is important for you (because that is for the doctors to say) or that perhaps abstaining is important for you (and we definitely have some members here who have been advised that intervention is really to be left until things are desperate because the damage done during their surgery is likely to be life changing anyway). It often depends very much on where your AVM is.

I agree with you that deciding on these things is an intensely personal choice: we have to choose danger perhaps one way or the other and the danger one person considers ok isn’t the same as the next person.

I hope this helps.

Very best wishes,

Richard

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Why isn’t there any research to show that the surgery works?

There was a study called ARUBA but I get the impression it was flawed. The trouble is that in order to prove one way or another, you need a controlled study with some people getting treatment and some people getting a placebo (i.e. not getting the treatment but perhaps thinking they did) and that’s just a fantastically unethical thing to do when the outcome you’re looking to prove is that treatment works (and leaving it doesn’t) when the measurable outcome is stroke or death.

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This was my previous attempt at reading the ARUBA study and a rebuttal of it: Thoughts on discontinuing treatment - #17 by DickD

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Anything you read written before 2017 worthless. The advance since are mind boggling. Work coming out of Japan is well worth a serious look. Why they have the largest population portion of anywhere is also a matter of interest ( not to your decisions of course) looks like you need a third Independent opinion though i have to say I’m not sure i’d depend on a surgeons opinion of neurology. I recently was privileged to be in the OR for very complex neuro surgery on my great granddaughter with a truly world class pediatric surgeon. Also present was a neuro tracking specialist flown in from Texas. He called the shots (even to the music in the theatre) That is what the best do. That’s where i woul start. You cant fix something unless you know what’s broke. Not knowing the details of your AVM, my concern about craniotomy which always has side effects may be misplaced. But it sounds like carpet bombing when a stinger may be more effective. As scary as a dx as have is, a class 2 is not generally emergent… in some quarters (certainly not all) an AVM less than 3 cm is often considered an incidental finding not a conclusion and further and extensive neurology workup indicated. Heres a couple that may help you direct your research.

TJ

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I might add in reading many “medical” journal articles, few are conclusive as there is almost never a control group to test the data (unlike a drug trial) and prolly would be unethical if they did. The authors are simply reporting their experience. We have no way of knowing whether they are any good at what they do. What IS helpful is their bibliography. Most that you find on the web is actually just a summary and does not include the bibliography or the “nitty gritty” At last count i have been referenced 437 times in articles. I would guess 400 times I would disavow what they concluded or used to support their article. ALWAYS follow the bibliography as part of your research. Really and truly the best use of personal medical research is to develop a list of questions/discussion items for your provider.

TJ

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Hi Richard, My situation is a very different dilemma qualitatively but in general a common theme. How much should we trust docs?
My situation: avm bleed, 2 craniotomies, epilepsy ever since. Lately had 2 daytime seizure as opposed to a gran mal in bed. Called my neurologist, his “aid” (whatever term) called back 4 days later and said doc had prescribed oxcarbazapine on top of the lamotrigine I’m taking.
Using the drug co’s own precautions/side effects, very serious (liver damage, sodium level probs. and psychological probs) I decided not to start a new med w/out talking to my neurologist directly.
The first appt. available is in August.
I’ve developed a healthy distrust of docs prescribing meds w/ drastic consequences. Plus, he wouldn’t even talk to me re CBD treatments. (there’s some good evidence now)
I’m sure lots of people here have learned that docs are not infallible.
I know the down-side risk is a key factor. Do you have any thoughts?
Greg

@GregF sounds like it would be worth getting a second opinion if you’re not in a good trusting relationship with the neuro team.

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Ditto to what Dick said. If you are uncomfortable a second opinion is always in order. BTW there are some “real studies” and a whole bunch of unregulated ones for the otc stuff the real prescription stuff (Epidiolex for example) has a reduction 47% of the time the placebo group had a 27% reduction. The OTC stuff was equal to the placebo group. Even at that the mechanism is quite well understood and thus far only applies to some very specific types of siezure. Not all siezures are epilepsy. Nor do they have common causes. Be careful reading up on drug side effects. (The ones for tylenol are among the worst) If it was reported its listed. A blackbox warning is another matter. Of course you want to get concerns taken care of. A good pharmacist is also a great resource.

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I did see a neurologist who also recommended surgery. I am just confused since the functional MRI stated it was grade 2 and was in direct contact with the sensory motor cortex. The surgeon said it was grade 1 and not in contact with sensory or motor nerves. I don’t know what to believe. I just feel that since there is really no evidence that surgery reduces the risk or neurological complications, stroke, or death, it is best to leave it alone.

Hey Greg

Ohh, now there’s a question with a never ending answer (especially for those of us with never ending medical experiences). From my experience, each dr seems to have their own differing view and are very quick and discrediting any opinion that differs from their own. That “Here, take a tablet” view is still very common and some of the side effects are simply nasty.

“I’ve developed a healthy distrust of docs…” Me too. I think when you’ve been on this merry-go-round of medicos you learn to question, and dr’s, they don’t like being questioned.

As for ‘he wouldn’t even talk to me re CBD treatments’, this is not uncommon. For many years the theory was that cannabis (in all of it’s forms) had no medical benefit. There were international agreements which banned it’s use for medical and scientific purposes and the paradigm that developed around cannabis had it listed as a DDA (Dangerous Drug of Addiction). With ‘some’ medicos they can be a little more open to ‘other options’, but some, even broaching the subject is fraught with danger. I spoke to my PCP about it ‘I don’t know nothing about it, I don’t want to know nothing about it’ was the attitude I got. Then he went into all of the negatives of smoking weed but was more than willing to dose me up on high dose opiates and any other pharma concoctions (???). I did a bit of an investigation into how I could obtain ‘legal/medical access’, then asked my PCP for a referral to a clinic that specifically dealt with obtaining medical approvals.

As for the negatives or ‘down-side risks’, yes, there are risks. But then there are risks/side effects with all medications. Some medicos do not define between CBD and THC, they see ‘cannabis’ and instantly say ‘No’. THC is the psychoactive component of cannabis, the intoxicant, the part that gives that ‘Stoned’ feeling. CBD does not give that stoned feeling. And you are correct in saying “there’s some good evidence now” as to the medical benefits CBD has in regard to epilepsy but that ‘Evil Weed’ paradigm is still prevalent with some medicos.

I try to look at it as a treatment, as a medication and as with all options it’s a case of trial and error. I’ve been trialled on all sorts of meds and as with any other med I have to weigh up the pros vs cons of each treatment option. I’ve had dr’s and other patients swear by a particular treatment, which I’ve then trialled only to find that, for me, the benefit either wasn’t there or the side effects far outweighed the benefit. And, in my own personal opinion, I think that’s an assessment each individual person needs to make for themselves. In this brain realm, how you, as an individual, react to a treatment compared to how I react to that exact same treatment can be VERY different. There is no such thing as a 'One-Size-Fits-All" option.

Merl from the Modsupport Team

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Hi zoom,

I have a left temporal lobe avm (grade 3) unruptured and untreated. I have watched many hours listening to neurosurgeons discussing and showing their surgeries on youtube. Specifically the channel is ‘University of Miami Neurosurgery’. I recommend it if you are interested in hearing neurosurgeons talk to one another about their cases, methods and outcomes.

From what I have observed in the discussions amongst neurosurgeons in these videos is that grade 1 and 2 are relatively ‘simple’ to remove with microsurgery. I must emphasize that this is the case with experienced surgeons who operate on AVMs quite a bit. In most instances, embolization is not required or recommended for grade 1 and 2 AVMs. In many instances it poses a greater risk when you combine the risk of embo and microsurgery.

Now, in your case it is good that you had a functional MRI. You mentioned that it is close to the sensory motor cortex. How many opinions did you get? Also, which doctors? I would get an opinion from another doctor who is well versed in AVMs. It could be that your avm is near the motor cortex but not intertwined in it. Also, is your avm diffuse or compact? How big is it? How close is it to the motor cortex?

Lastly, whether or not to have microsurgery is optional. However, if an avm ruptures it can cause death or severe morbidities. In your case seeing as how it is close to the motor cortex, you could be left with physical deficits depending on how bad the rupture is. Following the rupture they will most likely want to do the surgery anyways because typically once it ruptures once, it will happen again.

With a planned surgery with an experienced surgeon and a grade 1 or 2 avm, I think you would fair pretty well pending how far the avm is from the motor cortex.

I would highly recommend getting 3-4 opinions from well known AVM surgeons even if they are out of state.

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Zoom,

What do you mean when you say “surgery doesn’t work”? I’m not quite sure I understand what you mean by that? Surgery removes the AVM and thus you wont have an avm rupture once its removed. There can be risks and deficits as an outcome of the surgery. Is that what you are referring to as ‘doesn’t work’?

I meant that I have not seen scientific evidence that the surgery reduces neurological symptoms, or reduces stroke or death.

All of the research I have read states that there is really no difference in the chance of neurological problems, death, or stroke between treated or untreated unruptured AVMs discovered as an incidental finding in an older patient. In fact, any studies that have been done show in my situation, it is best to leave it alone.

https://www.ed.ac.uk/news/2014/avm-290414

I think this is the fuller article…

Part of the question might be whether the outcomes for 204 Scots are a good enough study to draw conclusions for yourself.

It is definitely unclear whether treatment in some cases is the right thing to do, so it has to be a decision that you the patient are most comfortable with. If choosing not to have treatment is right for you, then that’s the right thing to do. In the various articles I’ve looked at prompted by you, there are some hints there that age appears to be a factor in increased haemorrhage risk (so non-treatment may be good for some time but the balance may change over time) and deep reaching vessels included in the AVM or associated aneurysms with the AVM change the views of the professor, i.e. that intervention is more often indicated.

It’s a very useful reminder that the choice as to operate or not operate isn’t perfectly clear, though I note strongly TJ’s assessment that techniques are improving continually and the articles here date back to at latest 2014.

I hope the reference above is useful.

Richard

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Please note I’ve revised my post above.

@zoom

I basically take it that you’re trying to validate the same impossible choice that those of us (me included) who have an unruptured AVM need to make: to operate or not. And like possibly all of us, are “perturbed” by the idea of neurosurgery and its risks.

I don’t want to urge you one way or the other because I don’t know the answer, I’m not a doctor, so it isn’t my role to do that. The questions you’ve raised are completely valid and all of us in the same situation as you agonise in our own way over the same question.

What has occurred to me this afternoon (I’m in the UK) is that one of the things that you could possibly do to help you decide is to get a third opinion. Now, you may think that two is enough and you may think that you can’t afford to get a third opinion, so let me share with you something you may not know: the major neurosurgery practices in the US offer “remote second opinion” programs whereby for a smallish fee, they will offer an opinion on medical records sent to them via an upload on their website, rather than having to trek across the States to get there.

I know that Mayo and Barrow both offer this service and are top notch providers; I also know people who would say that Stanford is top notch (but I’ve never looked to see if they offer such a service).

The Barrow Remote Second Opinion Program costs just $100. I think last time I looked, the range of costs elsewhere was up to $400. Not the most expensive medical thing.

So I was wondering if that sort of thing might be of use to you to help decide. I don’t know if you can ask specific questions of the review: e.g. a view on whether intervention is recommended or “conservative management” but maybe have a look.

If there are major neurosurgery providers near to you, they may offer a comparable service but honestly, Barrow, Mayo and Stanford must be three of the top 5 institutes in the US, so good store can be put by their opinion.

I hope this might help. We are here to help rather than just trade research articles.

Best wishes,

Richard

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