AVM diagnosis hit me like a 10 ton bus... Literally

[X_Josh_X]

Hi all,

I’m new here, so I thought I’d start by sharing my limited experience with my AVM so far.

For starters I’m a 41 year old man from the states, I have 3 beautiful children and an amazing wife. I’ve never been hospitalized in my entire life, worst has been sutures for lacerations.

Last week, as I was driving to pick up my 2 oldest from elementary school, I was struck by a large passenger bus that blew a stop sign. Car was totaled, I was blessed to just have bruised both hands, suffered some whiplash, bruised chest from the seatbelt, and a slight headache.

My wife convinced me to be checked out at the local ER. (I’m not a fan of hospitals) So I tell them where it hurts, excluding the small headache, and my wife gives me a look, so I reluctantly told them I also had a tiny headache.

The doctor order routine CT scans on my chest, neck, and head. I get them done, and assuming all is well, started to get dressed in anticipation of being let go.

Doctor walks back in and tells me the doctor that reads the scans saw a shadow and wanted to do another CT, this time with contrast.

Walking back in, the ER doctor had an unsure look on her face. She explained a little bit about AVMs, and told me that the neurologist wanted to see me in his office ASAP.

They were able to see me the next morning and the neurologist explained that I have a 3-6 cm AVM on my right frontal lobe that they are putting as a grade 2. Unfortunately that hospital is not able to help, so I was referred to University Hospital in Cleveland.

The neurosurgeon there went through my options, and stated resection would be my best bet, with a possibility of an embolization to go along with it.

I have a whole new set of tests coming this week. MRIs, angiogram, blood tests, they even said I might be their first patient to use a new MRI technology that is supposed to be quicker, less intrusive, and better quality imaging.

To say this experience has been surreal is an understatement. I went from being a perfectly healthy man a week ago to now planning on getting my skull cut open and letting someone take parts out of my brain. Crazy.

[X_Josh_X]

I know that everyone’s brain is different, and each AVM is unique.

I’m just curious if anyone here has had surgery on their right frontal lobe and what kind of things have you gone through after surgery.

I’ve heard this is the place to have an AVM if you’re going to have one…but I’m aware of what functions that part of the brain does and just curious to hear from anyone who has gone through something like this.

Thanks in advance,

  Josh

[Gayilsmom]

My daughter has a right frontal lobe AVM.

She has surgery as a 4 month old.

When she was 6 the AVM regenerated.

At 13 she underwent gamma knife.

Between the ages of 6-13 she started to develop left side weakness as well as seizures.

After gamma knife she lost functional use of her hand as well as walking with a more pronounced limp (she gets Botox in Her had every 3 months and underwent an Achilles lengthening surgery)

Also, your right frontal lobe is the part of your brain that controls emotional regulation. She most definitely struggles with that.

She struggles socially and with executive functioning (also functions of the right frontal lobe)

Sorry I don’t have better feedback.

I’m sure others do.

[X_Josh_X]

I’m so sorry to hear about your daughter’s struggle so far, so young when she started this journey, but thank you for sharing your experiences. I’m very much a realist and understand the implications of open brain surgery in any context.

I’ve long been told I already have emotion issues and I do tend to enjoy more risky recreational activities. Not sure if this is because of the AVM, and how surgery might change and or exacerbate that.

[DickD]

Josh,

I know exactly how you feel. I think @Bill4 was a car crash survivor who discovered his AVM in much the same way as you but for any of us discovering these things comes as a shock.

I discovered mine because I could hear the rough flow of blood from the AVM because it was pumping into a vein that then passed by both ears. I found an article on the American Stroke Association website that described that noise but it was when I saw an ENT consultant who very quickly said, “Mr D, you have what we call an AVM” that all of my assumptions about the infinite and untroubled nature of life were shattered!

That was nearly 10 years ago and I had an embolization procedure to block off the AVM 7 months later. I’ve been well for the last 7 years: no reason to look back at all!

We have a number of frontal lobe patients here, so you’re not alone. Have a read round and hopefully some of the @BrainFrontal ladies and gents will share their story with you.

When I arrived here all those years ago, I found that about half of the time I was encouraged by the stories that I read; about half the time, I was perturbed by the stories of others, so balance your time here: it can be helpful but it can also be a bit of a rollercoaster. However, hopefully much of what you’ll go through we’ve done before and we can help you rationalise what’s going on.

Very best wishes,

Richard

[JD12]

Welcome! You and I were hit by a similar bus! I went to the ER with an extreme headache. My wife encouraged me(made me!) do so. She is a nurse practitioner and while I was normalizing what I was experiencing, she was having none of it. They did a CT scan and has a brain bleed, but had stopped but a fair pool of blood. Ambulance to the trauma and brain hospital, angio, another CT, steroids to address swelling. I was presented with two options craniotomy and Gamma Knife. My AVM was on the inner lobe of the left temporal, Gamma Knife presented far less risk of further deficits. I ultimately had GK and was confirmed obliterated via angio 27ish months later.

I had two kids, 10 year old son and 12 year old daughter. They saw their dad in the hospital in a tough place, and then a couple month recovery at home with some memory issues and a few other things that mostly resolved. As a parent, when I was feeling sorry for myself, I realized if anyone in my house had to go through it, I would rather it be me than watch my kids or wife. That may sound egotistical, but it helped me to a much better place after that bus had carried on down the highway.

The best to you, and as you go down this road, reach out to us here. We have a lot of varied experiences navigating our new realities. Take Care, John.

[X_Josh_X]

Thanks for your encouraging words, I’ve been reading through everyone’s posts and do feel better and worse about knowing the reality of the situation. I go for another MRI tomorrow under the neurosurgeon’s request, so I’ll try to remember to keep this updated.

[Pinky]

Hi Josh,

When I was 42 a friend took me to the ER b/c I had terrible head and neck pain. The pain was later found to be due to a herniated cervical disc but while I was in the ER I received an incidental finding of an AVM in my right frontal lobe found first on a CT then clarified by MRI. The ER doctor called a neurosurgeon who told them to do an angiogram and prep me for neurosurgery the next day. I was extraordinarily lucky that that ER doctor went off shift and I got a new ER doctor who told me that I probably had this AVM my entire life and if it had not caused any problems so far then I should be able to go home, get some rest, and then make an appointment with a neurosurgeon for a consult. I had been in the ER for over 12 hours, they had not let me eat or drink anything, and it was around 1am. He also told me that his friend’s wife had an incidental finding of a small bump in her lung and she had decided to have it biopsied and died during the biopsy procedure. The bump had been benign. Anyway the point was that the AVM was not an emergency and I should research and think about what to do if anything.

I did exactly that. I did a lot of research. I saw two neurosurgeons, two neurologists, and two IR doctors. I had an angiogram and a functional MRI. My AVM is 2-3cm, grade 2-3 near my prefrontal motor cortex (coordinates movement of the left side of my body). Both neurosurgeons recommended embolization followed by resection. During the appt with neurosurgeon who I decided to continue to see (b/c he was more experienced with AVMs) I was told that there was a possibility that I could have left sided deficits (arm, leg, and/or face) following surgery but these could be temporary and I could recover with therapy. I said that it seems like if there is anything I really want to do, I should make a list and go do those things. He didn’t argue with me. Later when I told him that I wanted to put off surgery b/c I don’t have anyone to help me post-op, I also didn’t get any push back. He did recommend regular MRIs every one to two years. I don’t like having frequent IV contrast going through my kidneys, so I’ve now been having MRIs every two years for 9 years. I am 51 now. According to my MRIs so far, so good (knock on wood). I am due for another one this year. I did make a bucket list and I’m still working on it.

I am not advising you at all to take this path. I don’t have kids or a spouse. I don’t have to worry about raising children and being around to watch them have kids of their own. I also as I said don’t have anyone to take care of me if I can’t walk or dress myself. I would suggest don’t let anyone rush you into anything and if there is anything you know that you want to do in life, try to do it before they crack your coconut, especially if you’re not having symptoms and your doctor doesn’t argue with you about it.

Best,

Pinky

[mattb]

Sorry to hear about your AVM, Josh. I was given a similar diagnosis in 2023 - a 5cm grade 1 AVM in the right frontal lobe. I had resection surgery two months later. I was told that right frontal lobe is one of the “better” places to have an AVM.

Two years later and I’m cured and doing well. It no longer plays any role in my life outside of responding to the occasional forum post. You can see more of my post surgery experience in my post here. Your AVM was discovered before rupturing, and is of similar grade and placement, so hopefully you’ll have a similar outcome.

Trust your surgeons judgement, the brain is such an intricate area that your surgery may not be directly comparable to other AVM surgery experiences that you read about.

Happy to answer any other questions you have on the surgery or otherwise . Wishing you the best.

[X_Josh_X]

Honestly, I already know that if I was still single without kids I would more than likely just keep on keeping on.

From what I’ve researched though, the actual risks of surgery vs a rupture with no surgery aren’t all that different.

2 different docs have given me about a 50% chance of a rupture within the next 2 years, which, as a betting man, isn’t the worst odds lol but far from the best.

Placing my wife and children into the equation is what makes me lean towards surgery though, especially since I know first-hand how strokes and similar events can impact a family. My grandfather had several strokes when I was young and we moved in with them so my mother could help out.

And as far as doing the things I’ve always wanted to do, I’m not saying that I’ve done it all, but in all honesty I thank Jesus that my list is just things that I financially couldn’t do anyways

[X_Josh_X]

Thanks for sharing, obviously very encouraging to hear such a great outcome for you!

I do have a question, did the doctors choose the placement of your incision? Were you given options?

I know it seems silly but is it just common to place the scars in or around the hairline just to hide the scars?

With mine being so close to the right eye I’m just wondering if getting a badass scar on the face is just something most people shy away from or if going in from a certain area is most effective.

I know these are questions for my surgeon, but just curious from your experience.

Thanks again, my wife certainly enjoyed reading your journey!

Josh

[mattb]

did the doctors choose the placement of your incision? Were you given options?

The doctors chose the placement of my incisions, I was not given options.

I know it seems silly but is it just common to place the scars in or around the hairline just to hide the scars?

I’m not sure, but you can see my scar two years out below.

If I were in your position I’d want the surgeon approaching in the way they feel most comfortable regardless of cosmetics.

[X_Josh_X]

Looks good, and obviously I want the surgery itself to be the only focus for the surgeon, but I can’t help but be curious.

Thanks for the quick reply!

Josh

[DickD]

The impression I get is that the line Matt has is fairly typical.

I completely agree with Matt that you want the neurosurgeon to be following their usual, preferred practice.

When I met my interventional radiologist (the specialism that undertakes an embolization, certainly in the UK) for the first time I found him quite abrupt, focussed on the task and not the slightest bit good at talking to his patient as a human being: a little bit of an engineer rather than a confident communicator. However, I reflected on the visit afterwards and decided that if I needed someone to do some re-plumbing in my head, who would I trust more, the engineer or the guy who has all the words? The engineer! Definitely the engineer, the person who’s less sure about talking to humans perhaps but by golly knows how to take things apart and put them back together correctly.

When I met him in theatre, he was a different animal, completely different. Like a fish out of water in the consulting room but thriving in the theatre environment.

Best wishes,

Richard

[X_Josh_X]

As someone who has worked in manufacturing for decades I’m not sure our experiences with engineers has been the same but I totally understand the correlation. I much prefer those that walk the walk over those that talk the talk.

I of course would never insist that my cosmetic concerns outweigh the integrity of the surgery, merely questioning if the normal placement of the incision is due to most people’s cosmetic concerns.

Always appreciate the discussion!

Josh

[dageris]

My goodness real impactful AVM life story @X_Josh_X . Prayers for you of course. This is my son’s AVM story from 2023 to present.

Diagnosis:

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 now 25 by the way.. He used to get 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 instead of Craniotomy . 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. 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. It takes about 2 to 5 years for GK to work or not.

My suggestion, if they have not mentioned yet to you, is that a Functional MRI is done so that they know for sure where the AVM is in comparison to functionality. You are going to be fine … we are cheering you on.

[Adrian1]

Welcome to the family @X_Josh_X & sorry to hear about your recent diagnosis… I had an AVM in the right frontal lobe found after a week of headaches lifting heavy weights at the gym, oddly enough the discovery of the AVM was by luck, if you can call it that and nothing related to the headaches!

I was 30 at the time and a month later while waiting for consultation with my neurosurgeon I had a bleed… if I didn’t know what I had prior, I think I would of dismissed my symptoms & possibly not here to tell my story 15+ years later.

It’s a gift & a curse… I had surgery for removal in 2011 & it was a slow journey but I got there & grateful for everything I have today… I can say I’m fine these days apart from the odd bump on my scalp I can feel at times but it’s absolutely nothing in the grand scheme of things.

Get your advice/options & go from there… technology has advanced so much since my surgery & I’m confident you’ll be just fine… it’s a decision you need to make with the family & they usually say the risk of bleed increases 1-2% a year, so the risk is there!

After having my bleed 1 month after diagnosis, I had no choice but to operate & remove, which happened a month later… keep in mind that a bleed can be fatal & so many wish they could have their AVM removed, but can’t due to location, we are lucky… keep us posted on your journey… God bless!

[Timb]

@Pinky @X_Josh_X

Hi Josh

I’m just offering a different opinion on the no treatment route. I was 19 and didn’t know I had an AVM.

Well, it ruptured, I was on life support and then spent 12 months re learning how to walk and talk. After 5 years I was able to live independently again.

If you bleed you could end up dead, or with a quicker or slower recovery than me.

I travel a lot now because that’s what I like and I think that my future medical situation could be bad so I need to travel now.

Good luck

Tim

[X_Josh_X]

My prayers for you and your son. I’ve thought about GK, but the neuros seem more confident with the resection. I’m glad that your son’s neurosurgeon took his well-being into consideration. I know though that the uncertainty of everything, even the GK treatments, can weigh heavily on you, so I pray that Jesus blesses you with a peace that passeth all understanding.

Josh