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AVM Survivors Network

Thoughts on discontinuing treatment

#1

Hi everyone,

I’ve read some other threads on this subject but didn’t necessarily find what I was looking for. Maybe on this type of subject there isn’t much to say anyway.

I have an AVM in and around my left mandible. I’m 21 and have had almost 20 procedures since I was 9yrs old. And I’m tired. Its crazy to think that this may very well be what the rest of my life is going to look like. However… I’m also beginning to wonder if it doesn’t have to be this way.

I know most experiences come from those who have an AVM in the brain. However, I’m wondering if anyone out there has a facial AVM or AVM outside of the brain, and has decided to discontinue treatment – or at least stop treatment for a number of years?

I realize this malformation isn’t exactly curable… and maybe withdrawing from bleo injections and/or embolizations could be a gamble for me. Maybe its a chance worth taking. My thoughts are that if I discontinue treatment (either forever, or just for a few years) that my life will be just as uncomfortable/painful as it is now… but my pain level is already through the roof, and I don’t think a fluctuation of that would really make the quality of my life that much different.

I know this isn’t the typical route for those with chronic illness to take, and its a subject that’s not often discussed. Have any of you felt this way (either with brain AVMs or facial AVMs, etc.)?

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#2

I spent the last 4yrs with the mindset that I was giving up on these embos that cause so much pain.I wd do well for 6 months, then a new spot wd hurt. Mine is a pelvic VM that also affects the left thigh. The pain is bad all day. Oxycodone was prescribed by a legitimate pain clinic. But they started weaning me last year. I had built a tolerance and needed more oxy for pain control.Even tho I have significant post-embo pain now, I am just limiting myself to crumbles of oxycodone.I take 7.5 mg four times a day. I cry from the pain, but I will not let my body start to NEED 15 mg…Yes,I gave up. But I hoped that maybe more science had been acquired. My most recent MRI showed a significant change.So I am glad I went back. I just had to do it and not lose the opportunity for some real change. My lifestyle has been too limited by this VM. But I do understand your need to take a break. JUst check in with a specialist every 2 or 3 yrs. Then , after imaging, you can make an informed decision. Even in my pain today, I just want to get that msg. Out to you.

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#3

Rachel, I was a brain AVM person so can’t be any technical help to you at all. I just wanted to pass along that I think it is great you are here asking these questions and seeking feedback to help you in any decisions or directions relative to treatment you decide. I think a few other folks will chime in with their experiences and opinions. Don’t be afraid to lean on us here, while we’re all different we can understand the challenges more than most. Take Care, John.

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#4

Thanks for the message, John. That was a really good reminder. In many ways, I feel like this is something I’m handling on my own. And its good to know this community is a source I can reach out to.

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#5

Thanks for the message, Eillen. And for sharing. I’m sorry to hear that your experience with your VM has been difficult and painful too. My docs prescribed me opioids, but as soon as they found out it was the only medication that helped with pain for me- they took me off of it. “Long term (pain) problem, but short term solution.” I almost don’t care about chemical dependence to the medicine because the pain I have is severe, and it inhibits me from doing work or school in the way that I used to. But maybe there is a hope in science & research… and that one day, maybe they will have another solution for us.

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#6

Looking into the future, at my age of 63, I am investigating medical marijuana. It is legalized in my state. Maybe I will be okay post-embo recovery. But history has shown that the pain always returns in a new area. I just always have to have a back- up plan. Life should be so much more than laying on the couch! I used to work thru the pain, until it became unbearable.

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#7

Rachel,

I think it’s a question that a lot of @Extremity and @Facial people face, to be honest. Like John, I’m a “brainer” but I’ve been hanging around here for at least 2 years, reading avidly, and my sense is that extremity and facial AVMs are rotters to get under control and I’m not even sure it is ever really successful. They seem forever to quieten for a while, then something gives and you’re on the next set of treatment. I don’t know why. I’m no doctor. But it feels so common for AVMs in these areas to recur or just be ongoing “sores”.

So… it makes sense to me that you’re calling a bit of a pause and thinking about what to do / whether to do, etc. I’ve no idea if it’s a good idea or dangerous, any more than you do. But I laud your idea of not just rolling on with the same plan.

I’ve included the Group names above for the extremity and facial folk, so I hope some will offer their own thoughts, experience, support. We are all here to lean, one against the other – no more solid than a house of cards, perhaps – but by doing so we might support each other and a few around us.

If it were me? I think I’d think the same as you. But I’d want to talk to the docs about the benefits and risks of doing either thing. They should be there just as much to help you decide “no” or “let’s watch it for a while” just as much as to embolise, resect or otherwise tinker with it.

Always feel empowered to talk about this kind of thing. You’re not alone and it’s just as valid to share thoughts, etc.

Very best wishes,

Richard

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#8

Thanks for the message & kind words, Richard. Really appreciate it and found your response helpful. Its good to know that I’m not alone.

Best wishes to you as well.

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#9

Hello, I’m also thinking of stopping treatment. I have AVM in my left foot (diagnosed in 2006), and have had several embolisations on and off since 2010. The treatment always went well–as in, nothing bad happened, and it did work on the target area, according to the scan result. But I’ve come to feel that the post op discomfort and having to use crutches for more than a month (hurts my wrists and the other foot/leg/knee) are not worth the trouble, because it’s not like the pain from the AVM itself disappears, and it grows in another area, like it’s a cat and mouse game.

My surgeon said some time ago, the overall size of the thing had reduced over the years, and I should keep at it to reduce the chance of bigger problems later in life. But the interventional radiologist who performs embolisation has consistently said, by coming to my bed in the recovery ward or calling me after every session, that my AVM is not something I should aim to fix but learn to live with. He’d basically tell me I should only seek treatment if the pain becomes unbearable. I had long been confused why two doctors who (kind of) work together believe in the opposite. But my surgeon’s story stuck to my mind–that if I didn’t have my AVM under control, eventually it would become so painful that I’d be asking for amputation. So I had a couple more embolisations. The surgeon was the one who started my treatment years ago, and it didn’t even occur to me that I could actually make an appointment with the interventional radiologist in his clinic and ask him more questions (instead of a quick chat when my head is still foggy from general anaesthesia).

I eventually had a proper consultation with the radiologist, who seems well respected in the hospital (everyone, from nurses to young doctors, raves about him), and now I think not doing anything is a good option, at least for now. This doctor said my AVM is unlikely to go away, but it’s mostly venous and therefore unlikely to grow massively or cause things like rupture. He also said every embolisation comes with its own risks (damaging skin, nerves, general anaesthesia going wrong etc), which may outweigh the benefit in my case. He said if I want to continue the treatment, I could, because he can’t guarantee anything either way and the choice is always mine. I haven’t sought treatment for two years now, and the pain level and everything else has stayed the same as it has ever been. So, I’m starting to think, both this radiologist and others on this website are right–AVM in extremity is hard to get rid of, and pain management is our main concern.

I’m incredibly lucky to have access to embolisation for free (because it’s performed in the public hospital), and not having to worry about fees beyond a few hundred dollars for a pre-op MRI test gives me the peace of mind, if I want to resume the treatment. I guess there is no ‘final decision’–just an ongoing process of reflection, strategising and keeping an eye on any change?

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#10

Hi there. I have a brain AVM that was present at birth. For one reason or another I have chosen not to pursue treatment, yet I’m still here 45 years later. I just wanted to let you know that although it has to be your choice you wouldn’t be alone in discontinuing treatment. You have to do what you consider to be right for you.

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#11

Rachel,

I will write more later but let me give you an overview of my story…

AVM discovered when I was in 8th grade. Yeah, 41 years ago. I’m that old but good news - yesterday I felt like I was 80 today I feel closer to 60.

My AVM was first discovered in my left neck and clavicle area. It stayed basically there and didn’t move until January of 2018 when the doc said that we need to do another Embolization because it was moving up into my brain and my risk of brain bleed was growing.

I’ve had treatments (a combination of embolizations and surgery in 1978, 1986, 2009 and 2018. Every time, the driving question on whether to do someting or wait was a question of risk. Is the risk to my health and quality of life greater or smaller than the risk of something going wrong.

In 2018, the risk of doing nothing was possible brain bleed, possible stroke, possible death. We did, the brain bleed is almost completely eliminated and instead I’ve got this whole other conglomeration of symptoms. I think I got the better end of that deal. More later,

TJV

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#12

If I might chime in. And I think all the responses and topic is wonderful. My only input would be two fold. First, they finished the ARUBA study a few years back and decided that it was not worth continuing the study because too many patients were dying. I post the study here: https://www.google.com/url?sa=t&source=web&rct=j&url=https://thejns.org/downloadpdf/journals/j-neurosurg/126/2/article-p481.xml&ved=2ahUKEwjo04ae1I7hAhXouFkKHV0wAgIQFjABegQIAxAB&usg=AOvVaw06Zpr6i-kvAJJ-be89mbI3

Second, and this is from personal experience, I waited for surgery and mine bled. Again, I am a survivor not a doctor, but I am definitely not for the wait and see approach. If you have an AVM, particularly in the brain, I would advise treatment. Because waiting and seeing, could mean losing your life.

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#13

@randombeggar - if you had told me 20 years ago that I would be reading articles in a neurological journal and actually finding them interesting, I would have suggested you should read an article on borderline personality disorder - because there isn’t a chance in the world that I would have…

I found it really quite interesting in that yes, there were too many people dying but why they were dying was not what I expected. I had expected that it was because they were in the “medicine” side and they needed the surgical option.

My take on it is different (and please please please correct me if I’m wrong) is that they were saying both groups get adequate/competent care and the half that get to trial the new drug have an increase risk of dying from it. (Page 4, bottom paragraph, right column) - and my former English prof in college would go into mourning if he saw that type of a reference citation. And the other half gets protection from whatever sort of unknown reactions the trial might bring.

So, in a nutshell, it seems to me that the study basically says, “If you have a bleed, obviously you need to do something.” “If you don’t have a bleed, analyze the risks and rewards carefully because it might not be that surgery is good and right for you.” Which brings us back to the question - do you do something if yours hasn’t blown or don’t you? I’ll be honest with you by page 5, this brain wasn’t following everything but what I took from it was that everyone is different and you have to take that into consideration.

Which just goes to show that treating AVMs no matter where they are requires physicians with experience and the ability to compare and apply that knowledge to each situation.

Which circles around again to one of the purposes/reasons (I believe) that this site makes such a big difference. Where else can you say, “anybody know a doctor with experience with AVMs in __________” and you’ll probably find one.

@ssweet-dispositionn - I went 23 years without any treatment/embolizations or anything. My Neuro surgeon wants to do another Embolization that he said will help with the tremors in my left hand and arm. I told him, thank you but right now, I’ll take being a right handed drinker.

TJ

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#14

Thanks for the reply. And please understand, I’m not trying to debate or be divisive. However you said “@Paul_McMonagle -
My take on it is different (and please please please correct me if I’m wrong) is that they were saying both groups get adequate/competent care and the half that get to trial the new drug have an increase risk of dying from it. (Page 4, bottom paragraph, right column) - and my former English prof in college would go into mourning if he saw that type of a reference citation. And the other half gets protection from whatever sort of unknown reactions the trial might bring.”

I agree in principle, here’s where I take issue, not with you but with current medical practice. I have bled twice, both times unexpectedly and once while waiting for surgery! So, the notion of waiting is not only not an option, but its essentially giving doctors the license to get a free pass when a misdiagnosed.

I’m not blaming doctors. They as a whole, do a wonderful job. Individually there are decisions made that in retrospect maybe might not have been the best, but I believe them to be doing the best they can with what they’re given.

I suppose the issue is with the common knowledge needs to be expanded, because I was misdiagnosed at first because I was in a college town so the ER docs thought I was drunk (I wasn’t it, was a bleed). Then transferred 3 or 4 hours north for them to tell me it was a bleed. By then, damage had been done.

The issue is defining competent care. An errand diagnosis of drunkenness or inebriated not only is wrong, but it can be terminally wrong. And in my case, it should have taken my life.

It was not from medication but an innercerebral bleed, which by the grace of God has allowed the docs to see the leaky vessels 10 years later when it bled again. The only protection for me was chance and for those who believe in a higher power, the grace and mercy of Jesus.

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#15

If we lived close enough, I would buy you a coffee and have a chance to shake your hand. This, in my view, is what is right about this group that is missing in most of social media.

You shared a link with some thoughts. I read it, reacted with some comments and tried to be as respectful as possible and add to the conversation not just noise. You responded with more thoughts and stories - frankly I would love to write your story or have you write it. So many people could learn and be encouraged by your story @randombeggar.

You have made my day deeper and more education filled. Thank you.
TJ

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#16

Great conversation and I say that because I agree with you both.

I can be (and have been) a little critical of the medicos, as the other TJ (Tom) has pointed out. But I do also agree with you Paul that ‘…individually there are decisions made that in retrospect maybe might not have been the best…’ I also acknowledge that hindsight can be a great thing, but after many years of highlighting an issue that was minimised, ad nauseam, until it became an emergency situation was both highly stressful and ultimately life threatening. If those who perform such a role removed their own prejudices and preconceived ideas (ie drunk or hypochondria) a proper and more appropriate investigation and ultimately diagnosis would make the whole process easier for all involved.

I also have to agree with you TJ, in that “…if you had told me 20 years ago that I would be reading articles in a neurological journal and actually finding them interesting, I would have suggested you should read an article on borderline personality disorder - because there isn’t a chance in the world that I would have…” it’s often not until you are touched by such things that such articles become relevant. Even in working within the care industry I thought I was fairly knowledgeable, but the cold hard realities of it all truly give us an insiders view that none of us ever wanted. But in saying that the perspective from both sides has been a real eye opener for me at least. I can see some traits shown in clients, shown in me. But to then read them as not so much traits but more as a result of a specific condition or diagnosis, truly makes me take stock of my own preconceived ideas/judgements.
So to both of you
“You have made my day deeper and more education filled. Thank you.”

Merl from the Moderator Support Team

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#17

Chaps,

I’ve tried to make sense of the discourse that Paul shared with us about the ARUBA study. My reading of it is along the lines of…

If you’ve had a rupture of an AVM, then nobody is disputing the efficacy of surgical or endovascular or radiotheraputic intervention to reducing future risks. However, this entire article seems to me to be a set of disagreements between two sets of doctors as to how to determine whether interventions such as surgery or embolisation or radiotherapy are “better” at reducing future risk than merely treating symptoms “conservatively”. I’m not quite sure whether that conservative treatment means painkillers or anti-seizure medication, or just waiting for those symptoms to appear before then concluding that the other treatments should be started.

Both sets of doctors agree that the ARUBA study done between about 2007 and 2014 was flawed and possibly unbalanced. So although the results appeared to show that “conservative” management of unruptured AVMs was more successful than where intervention was taken, the way the study was done is cited as unbalanced and not to be relied upon.

The problem is that AVMs are quite rare and no two presentations are sufficiently alike for the probability of determining exact outcomes: whether to treat or not to treat. Both sets of doctors agree in their own ways that clear separation of results (as illustrated in figure 1) is unlikely. The problem, therefore, is how to set the scope for study such that people taking part are not disadvantaged by either conservative management or interventional treatment. In some cases, randomly allocating treatment would arrive at the wrong answer, where other knowledge suggests that it is perhaps obvious. The argument set out in the response is that interventional treatment is unproven and therefore the starting point should be “not to treat” but by randomly allocating patients 50% to treatment and 50% to continue with no treatment should be seen as an avoidance of surgical risk for the latter and the chance for participation in a trial for a better outcome for the others.

However, my reading of it is that it is all about semantics. Neither set of doctors is satisfied that there is useful, independent evidence one way or another that tells us whether intervention is the best thing to do, or not. Should a trial be undertaken including all types of AVM, or should the apparently obvious, extreme instances be excluded? – those where other work suggests that intervention is best should carry on receiving treatment and those where intervention would not today be recommended are also excluded from the 50% chance of being recommended treatment.

CONCLUSION: It is perfectly unclear whether treatment or “conservative management” is best for most unruptured AVMs.

Does that help at all? I know I’ve continued to use long words!

Best wishes,

Richard

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#18

Hey Richard! Thanks for chiming in! You said “However, my reading of it is that it is all about semantics. Neither set of doctors is satisfied that there is useful, independent evidence one way or another that tells us whether intervention is the best thing to do, or not…”

While I can certainly understand your statement, and as a survivor who has gone under the gamma knife twice and regular knife once (craniotomy), I can attest it’s not semantics😁.

I suppose the results are really the deciding factor. Do you A. After diagnosis go on untreated risking the rupture or b. After diagnosis go on living with a malformation of blood flow in your brain.

The decision was made for me twice because I was originally brought into the mess from a bleed in 2000, then while waiting for surgery for another brain AVM in 2010 that one bled. As the saying goes, “fool me once, shame on me, fool me twice…” I, as in me not anyone else, but I do not want to be surprised by another bleed.

That was the most exciting, debilitating, and drawn out surgical recovery I’ve ever undergone. I had to relearn to use my left side. I had to go through grade school-high school in a period of 6 months. I had to undergo intense physical therapy to regain use of my left side. If I had known beforehand there was a risk of bleed, you better believe I would have been proactive no reactive.

I’m so great ful to all the docs that treated me. But as I’ve said before, and my wife does not like me to say this, but doctors are practicing. That means each case is different. They take the best information available and treat accordingly. I merely wish I could has expedited treatment before they ruptured.

Sorry if I rambled, but my advice, as a survivor not a surgeon or medical practicioner, is get the AVM treated rather than sit and wait. Life’s to short to sit and wait. Blessings!

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#19

Paul,

I understand what you’re saying about you. And I’m convinced that both sets of doctors discussing what to do believe that in some circumstances, treatment is the best thing to do and in some circumstances it appears that treatment might not be the best thing to do but the conversation being had in the letter and response that you shared is that both sets of doctors agree that there is no independent random trial (such as is normally conducted to determine that a course of treatment actually improves patient outcomes, rather than presenting them with increased risk) that properly gives them clear guidelines as to when to choose treatment and when not.

I think it is this lack of evidence that means they are “practicing”, as you say, but the determination of both sets of doctors is to try to propose a study that is appropriate to get to that evidence.

The semantics I’m referring to is that one group of doctors accepts that intervention is the starting point and the other set say that the starting assumption for best treatment is “conservative management”. So they are arguing over terminology. In that regard, it’s a bit pointless to us (in my view) other than that they agree there is no nice independent trial anyone can point to that indicates how to choose.

I rather agree with the first group who suggest putting the apparently “obvious” cases out of the trial and focus only on the grey areas where it all seems to overlap. But the rebuttal is that you cannot determine the boundaries clearly like that, so the trial would be invalid. I do not think, if it carries on with this kind of disagreement that any useful trial will actually be done.

The problem in my mind is that doctors believe in the value of intervention (like you) and therefore can’t bring themselves to risk a patient’s life by choosing what feels like the wrong option. Plus, it takes so long to see whether the choice was correct; plus if they choose incorrectly – the proof of the pudding – is that the patient has a stroke and all of the implications of that. So whether there is any reasonable way of conducting a trial is a difficult question. On the information presented, I think not.

So… it just remains that there is no statistically randomised data that indicates one way or another. Judgement has to be based on non-randomised, non-balanced information, which is what your doctor and my doctor do.

Ramble ramble! Enough rambling from me!

Very best regards,

Richard

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#20

… bit more ramble…

The one thing I want us to enable here is that we discuss – can discuss – to treat or not to treat because one or two people have mentioned the ARUBA trial and the question of efficacy of treatment and I think it is important for us to be open to the non-treatment route. Some people don’t get a choice, so in some ways it feels supportive to them that all of the answers are not surgery. Equally, it seems often the case that online chat groups with an agenda could push received views onto newcomers and I am sure it is not our policy to in any way support that. So balanced conversation should be had.

I think it is brilliant that Rachel has asked the question and I think it is equally brilliant that you’ve brought the discussion on ARUBA in. I don’t think it gives us a direction in my mind but shows it isn’t clear cut one way or another.

I hope this helps. I do want to enthuse about treading into this interesting area.

Very best wishes

Richard

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