New Diagnosis - AVM Left Parietal (btwn motor/sensory)

General
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Hi. I don’t know what to say so bear with me.

Medical:

I was incidentally diagnosed during a back scan in 2024. Then I was told it was no big deal by the ER doc and it was just something people had so I went on my merry way thinking that headaches, numb face/arm, and everything else is just what every had from time to time. Two years later, turns out to be a big deal. My AVM is centered on the left postcentral gyrus and precentral sulcus, so it’s nestled between my motor sensory and motor control with steal as far as language.

I’ve had all the work up and no rupture yet. The neurosurgeons here very much want me to do surgery, but I am also a candidate for gamma knife which I currently have scheduled for a month from now. There is an interdisciplinary team that wants to meet with me again next week to revisit surgery though even though I don’t want that.

I have been having worsening headaches and maybe seizures, no one knows really. I have an EEG to add to the list of tests (2 MRIs, 1 fMRI, 1 angiogram, 1 CT, in the last month) this coming week. It’s pretty clear I’ve been suffering from CSD (cortical spreading depression) as a result of the headaches from the AVM. I have the fun feature of having developed bilateral control of language and motor sometime probably in the womb as a result of this thing. The end result of that is, I don’t feel great, but I just keep on keeping on. This is getting harder to maintain though, which I thought was perimenopause because nature hates women, but turns out it is more likely age wearing down this thing in my head. The CSD is pretty non-stop so my right face and top of my right arm and hand are numb all the time while it’s going on. I started magnesium and a seizure/CSD mediation together which is helping a LOT with this over the last week.

Me:

I’m at the top of my field in a high stress job that demands rapid fire cognitive load. I am a mom to four kids presently in the home, one of whom has significantly high needs so I am her caregiver at night when I’m not working.

Solution wise, I need to not drop dead randomly. Also, I need to not have long periods of down time that my life cannot sustain because people are relying on me. I’m not sure why I’m here but I figured there must be some people out there grappling with the insanity that this diagnosis carries along with it. I fluctuate from mad, to scared, to frustrated to weird existential crisis moments about who the hell I am really. I thought maybe it would help to meet other people who have been through this or are going through this.

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Hi @Anne2k

Welcome to AVM survivors! It’s great that you found us (and I apologise for being slow to find your post: I’m usually almost omnipresent!)

Two thoughts occur to me:

  1. An MDT meeting is perfect: they really should propose what is most sensible for you to take forwards with much less bias than any doctor or discipline acting on their own, so if they make a recommendation listen to it. If the risks are similar either way, then the choice is yours. If they’re pushing you in a particular direction, cross-examine them on why because you may need to follow their proposal, so you need to satisfy yourself, especially if it isn’t the route you fancy yourself.
  2. To your concern about needing to carry on functioning, who can say which route will have the lowest impact on you? Especially longer term. You need to take the input of the relevant doctor(s) to help you to decide but I would say that radiotherapy doesn’t tend to impact you immediately. From reading around here, I believe that most radiotherapy patients start to have effects at about 5 months or 6 months post zap. And the most common ill effects are some oedema, which may need intervention. Overall, it seems low impact for someone in your situation but there is a risk of zapping a bit more than the AVM itself and doing a bit of damage to functional brain, especially if the AVM is close by ‘eloquent’ areas: the team will be concerned about damaging anything ‘eloquent’.
  3. Some people much prefer the immediacy of open surgery to the longer timescale for radiotherapy and often, there are at least as good (possibly better) outcomes via open surgery (craniotomy) as any other route. The chief concern will be access and again not doing any collateral damage.

We’ve a bunch of people here who have worried about all of these things, so feel free to ask anything you need. I’d also say that taking a second or third opinion is often wise, though honestly I’m encouraged by the MDT approach: I think that’s ideal.

Welcome!

Richard

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@Anne2k

Hi

I hear your concerns and many people here have the same.

I will give some different opinions for contrast. I had surgery, post rupture, and live independently 35 years later.

From an undiagnosed bleed I was out of action for 12 months and probably 5 years until I had an independent life again. Your family will have to learn to help you.

If your doctor has a strong suggestion for certain treatment then decide whether to trust them and check their success rate.

If I hadn’t had surgery I may be dead from a second bleed.

Tim

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Thank you for this. They met with me and told me they found several aneurysms on re-review and showed them to me. While GK sounds nice and clean in many respects, and elective brain surgery sounds terrible, emergency brain surgery sounds really really terrible. So I have opted for the elective surgery route. Now I need to survive 27 days until they can go get the thing out really. I’m honestly terrified but at least I either go on the table or it’s done with once and for all.

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It sounds good. While a craniotomy is a horrifying prospect, it is very widely used – the most common approach among all of our patients here, I’d say – so it is not a niche idea and we have literally thousands of people here who’ve gone through the same.

The key thing I’d encourage you with is that if you come round with not everything as it should be, don’t panic. Don’t think OMG that’s it. It isn’t. There’s every chance of a bunch of irritation going on and once the irritation and swelling goes down, you’ll go back to normal. We’ve had people unable to speak temporarily, unable to see temporality – scary stuff like that – but it has just been temporary.

Let us know when you go in and we’ll cheer you from the sidelines. If you’ve got any worries or questions, talk about them because we’ve got people who’ve worried about the same stuff. If we can help, we will. I do understand that you need to manage your worries your own way, so do what you need.

Lots of love,

Richard

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My son was similar to your case.

Diagnosis: 2023

Left frontal parietal sylvian fissure region AVM with some superficial venous drainage and likely input from the Middle Cerebral Artery .

With you as we all know the feeling of the AVM shock news. I think I went numb for a few months until my son received treatment. Even after treatment there was the adjustment to circulation inside my twenty four year old son’s brain. He still gets numbness on his right side due to left side AVM. They were to do Embolization and Craniotomy on January of 2024. He successfully received Embolization but two days after that the Craniotomy did not move forward because Neurosurgeon feared he would leave him paralyzed on right side while he was already inside his brain in the operating room . AVM was closer than he thought to his motor cortex. In March 2024 he received Gamma Knife . Its been a nightmare roller coaster but things are looking better for my son. Trust me that all of us know how you are feeling. I am with @DickD as far asking about embolization procedure and the reasons why its not an option for your son. The Embolization for my son has helped as he doesn’t get the Auras before seizures he suffered prior to treatments. Now we wait for Gamma Knife to do its job with some peace of mind.

You are not a candidate for Embolization?

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I’m sorry to hear you went through this with your Son! These are scary enough to deal with as a grown up for myself. I was set for embolization and resection but they have changed the plan and removed embolization, likely due to the recently discovered aneurysms. Gamma Knife is also considerably less safe for me for the same reason. I have a 1 in 3 chance to a 1 in 2 chance of a massive brain bleed during the closure process of GK (3-5 years time). So I have surgery in 2 weeks and five days and I’m trying not to stress, but also I’m super stressed.

I did go back and look at the ER records on my ‘incidental’ finding of the AVM two years ago. I went in reporting a headache more severe than I would normally get and numbness all over the right side of my body. They just sent me home with steroids to treat potential ‘back pain’ (really treated my brain swelling) and told me not to worry about the AVM, lots of folks have those and they are no big deal, it’s unrelated. I’m pretty mad about that in retrospect.

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:astonished_face::astonished_face::astonished_face: OMG! That’s pretty terrible.

Is there anything you want to ask about going in for surgery? I’m out of inspiration for what I might tell you myself. One of my colleagues in the bafsupport.org support group talks a lot about great hydration: make sure you do great hydration in the day or two running up to surgery – you’ll be nil by mouth from midnight the night before, I guess – but good hydration in the run up seems like something we can all do to look after ourselves a little. Anything else we can talk about to help you a step or two along the way?

Very best wishes

Richard

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Thank you for asking! I am super curious about what the heck I do about recovery. What does that even look like? I have coloring books, audio books, body cleaning stuff, walking support, cooler bags for ice packs. Is there anything here that gives some helpful tips on that stuff? I don’t know anyone who has gone through this. I assume screen time is a zero for awhile like a really bad TBI basically. I’d go digging but I’m a little afraid too because I’m trying to steer clear of things that are just going to freak me out right now.

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Anne,

Sorry for being slow.

The thing is, if everything goes to plan, you’ll be out of hospital in 3 or 4 days perhaps. If you get some swelling that slows things down, it might be more days in the hospital. If you have a bleed while you’re in hospital, it can take much much longer and what you’re able to do meanwhile will be on a different scale.

Take some things that you think you’ll appreciate for the immediate waits and the tail end of recovery. Do you have someone at home who will come to see you – husband for example? Because between you you can decide anything else you might want as you go. I think I had a book. I think having my mobile phone (with music on, for example) was not recommended in case it went missing.

I had a catheter embolization procedure, so a very fine tube inserted at my groin, navigated through my arteries to the relevant place in my brain and the glue/solvent combination injected to block off the erroneous connection. I had a headache from the contrast material and the solvent and possibly swelling/upset where the glue was but the drugs were good, so it was perfectly doable. I’m no macho guy.

My wife stayed with me all through the first day until I went in for the op, so there was no quiet reading time to be had, as she wanted to chat. She did come and see me late at night once I came round post op. I’m sure her day was worse, more boring, more worrisome than mine.

On night 1 I did nothing but eat, drink, wee, take morphine and have a light shone in my eyes every hour or two. I was laid out perfectly flat and completely incapable of doing anything. Day 2 wasn’t much different. I marvelled at the other patients and counted myself very well indeed. I think I stayed mostly flat. Day 3 I think I walked to the loo myself, despite protestations from the nurses, and I went home in the afternoon of Day 3.

Neurosurgery may be very strange to us but in some ways, it’s just the same as any other hospital operation. The nurses don’t expect anyone to be comfortable with the idea of surgery and they just walk you through the day. In fact, I’ve just remembered that I treated it like an all inclusive holiday – nothing to do but lie in the warm and be waited on hand-and-foot – a few days of enforced relaxation.

Very best wishes,

Richard

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This is interesting. They are going a crainiotomy(SP?) and resection and a diagnostic angio (the one through the leg) afterwards and are telling me I’m going home after two days. I’ll have a plate in my head and screws and stuff. I assume a crap ton of swelling. I’m dubious. I have my husband and family who will be at the hospital and with me during recovery at home. I am told I’ll be pretty tired for a few weeks/month and won’t want to do much. I just am not sure what I CAN do in that at home recovery time assuming I don’t bleed out which is another animal all together obviously.

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So I had angiogram plus embolization and then a further angiogram 8 weeks later, so I expect you’ll be having an angiogram (unless that’s already been done), the craniotomy, a cranioplasty (the metal plate) if that’s required and then the angiogram a few weeks later to see that all has been done 100%. Maybe the doc likes to do one straight after or maybe they like to do it a month or two later like mine did, I don’t know.

In the weeks post op, I was headachy as everything settled down. I found sleeping difficult but then I had found sleeping difficult anyway. I had two weeks signed off work by the doc and then I took a week as holiday leave. I then went back to work full time. During those three weeks, I was perfectly able to do normal domestic things and take it easy. At home, I took Tylenol as a pain relief and was able to taper that off over time. I don’t think I had fatigue more than a week but people do report very lengthy fatigue.

I found that I needed to take it a bit easy after those three weeks – I remember being in a meeting on one occasion where I was having to sit on a bar stool and look up at a presentation screen and I had to resort to some Tylenol again.

With what your docs are describing, I’d say my three week experience of taking it easy will stretch over a month or two for you. A lot of people do get significant tiredness / fatigue post op, so if that affects you, you may be less able during your recovery.

The 2 day stay in hospital sounds similar: the key will be that you’ll spend most of your recovery time at home not in hospital, so you’ll have everything around you that you might want while you’re doing the majority of your recovering – all being well.

I don’t expect that they will discharge you home with any significant swelling going on. I don’t know about that. But if you have anything significant swelling-related happening, I think they might delay doing the cranioplasty – the metal plate – and that might lead to you spending a bit longer in hospital, but it sounds like the expectation is just a couple of days, which is great.

A lot of people have a craniotomy and come out in 3-4 days, so it’s not an unrealistic plan: it’s perfectly normal. Since your doctor knows what your exact situation is and what he or she is able to achieve, then I’d say you should have some confidence in the plan.

I’d like some of our craniotomy patients to share their story of how long they spent in hospital but there’s every reason to believe in the plan.

Lots of love

Richard

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Hello Anne,

My daughter had 2 embolisations and a craniotomy. She had a rupture of her avm (right parietal) which resulted in emergency embolisations. They could not embolise the whole avm as she had several aneurysms on it. So they closed those. 3 months later she was going in for embolisation of the avm. However when they did the angiogram the day before they found another aneurysm that had formed in that time. So they could only close that one off. But now they could not get to the avm because access was blocked. She was not a candidate for GK because of previous bleeds. More waiting. Months later an mri revealed that access had been created by the dying braincells caused by the bleed. This allowed for a craniotomy. At some stage she will have an angiogram to see if it was all taken out.

During this whole process the craniotomy (for which I was most scared) was the easiest of all the procedures. In hospital for 3 days - yes I was shocked - we went back for a check up and bandage change twice in 2 weeks . My daughter had no side effects from the craniotomy itself. No swelling, no headaches. She didn’t take any painkillers at home. She went back to school after 2 weeks once the staples had come out. Compared to the rupture and its consequences it was a walk in the park. The surgeons know what they are doing and will not take any risks.

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@Anne2k

I think you’re going into hospital in a day or two, so before you go in, I just wanted to say you’re fully in our thoughts. I’m sure there’s every reason to be positive about the week ahead, so just take your time, relax and the nurses will guide you through.

One of my colleagues at bafsupport.org always reckons that good hydration in the run up to an op is a good idea, so make sure you hydrate nicely today and tomorrow if you’re in on Wed. I guess you’ll be on nil by mouth on Tuesday night.

Lots of love and best wishes for the week ahead,

Richard

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Thanks for the follow up! I survived and I’m doing great. They did an excellent job as far as I can tell. The operative report showed no dip in brain function on the eloquent areas. I woke up with some aphasia and some lip numbness but I told myself to stay calm. I think the scary part was trying to convince the ICU guys that I was NOT stroking out, I could understand them and understand what I meant to say. They kept me for five days as I had a slightly larger air bubble that had to resolve which allowed for some the fluid to aspirate in my lungs. I had to prove I was not under attack from pneumonia.

I’ve been home since then. I get up and go walking every day. The numbness is getting better and the aphasia only occurs now when I get tired. My brain has oxygen all over for the first time in 50 years of adult life. I am not the same woman that went in there, I’m better. I’m being patient and letting healing happen but I couldn’t be happier with the outcome. <3

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Well done! I think I did suggest not panicking if if everything isn’t perfect, so well done for being ok with hard aphasia to start with. It’s great to know that that is fading.

I worried about you when you took a bit longer but there’s nothing for it but to be patient and optimistic when people go quiet on me, otherwise I might screw myself up completely. Can I tell you it is wonderful to hear from you!

My expectation next is that you might find the path to full recovery not to be straight. I was very perturbed at odd dizzinesses that I had for several months post op. Get anything checked out that worries you but I reckon there’s a better than 50% chance that any oddnesses will just be everything settling down. And take it easy for several months while that meandering path is going on. I think it was playing badminton or going to the gym or driving for several hours to a concert that set me back a bit. It’s important to resume normal life and look forwards but I think we just have to go steady to start with.

Well done!

Very best wishes!

Richard

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You did in fact tell me this when I was perfectly prepared to freak out otherwise. :rofl: It was good advice and I will take the follow up advice just as seriously.

My follow up advice for the group is to watch out for grocery stores in the first week. They set up nice displays and lighting designed to trigger the brain and control/command attention. I didn’t know how serious that was until I went in there and thankfully my husband got me out of an aisle I was unable to keep my eyes open in very well. It’s better now but I have a MUCH better understanding as to why my autistic daughter doesn’t like that place and why neurodivergent people struggle in these spaces.

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