What would you do?

I have one son, he’s been experiencing similar symptoms to what I went through when I was about his age. Like today, he had a terrible headache to the point that he was vomiting for most of the afternoon. This is probably the worst out of the episodes that he has experienced.

I asked him exactly on what his symptoms were - typical pressure behind the right eye, severe head pain - this is one of a handful of episodes that he has experienced

They really crept in within the last few years - But, I have been concerned ever since what happened to me.

I don’t know if him or I are ready for the results. . . This can be very life changing in so many ways. . . He’s 12 & is a very sharp/bright kid - unlike me at his age.

I’ll take another handful of hemorrhages any day before I can see my son go through any of this. Bad enough he had to see me when this happened - he’s totally on the same page as I am, we both just try not to think about what can be the cause

When all of this happened to me, I asked the neurological team right away of what is the likelihood of this passing down to him - they all agreed that it’s about a 50/50 chance. . . It really caught me off guard today. I’m used to my own issues, but not him - not at all

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Mike,

I am pretty sure we all worry about this sort of thing. I know that @MartinB worried about one of his kids and I’ll tell you about my son but so far as I understand it, it is rarer that there is a genetic trait going on here, so I’m surprised by the 50:50 statement (unless you’ve already had some genetic testing).

I don’t think there’s anything to do but to get him checked out. The way I look upon it is that at least as many of your own issues may well come from the fact you’ve had a bleed, not simply the presence of an AVM. So avoiding a bleed (in my mind) would be a much better outcome than ignoring it until that happens. The knowledge we have can help our kids.

My son has a birthmark – a hemangioma – at almost exactly the point that I had my DAVF, on the back of his head :exploding_head:. He used to get headaches after sport and I can’t remember if there was something else. So we asked the paediatrician. This being the UK, she didn’t want to spend money on scans that she didn’t feel would lead anywhere and we’ve been sent away until the point he has some other symptom: then she would investigate. Her view overall was that it was unlikely (and therefore no need to spend further money) but she was keen that if he gained any further symptoms to go back. We’ve not had to go back so far and it has been 6 or 7 years but I wouldn’t hesitate to go get an MRI or something uninvasive to go and have a look if he gained any more symptoms. Unexplained vomiting definitely feels like a symptom of concern.

There are definitely genetic conditions that bring AVMs with them. There are definitely other members here in the Pulmonary, Heart & HHT group who know they have AVMs in the family. The one person who leaps to mind is @jdale who I seem to remember was going through operations as well as his daughter.

So what would I do? I’d ask for a scan. I did ask for a scan. It does open up the emotions but for me it enabled knowledge and information and possibly choices that ignoring it would not have enabled.

Hope these thoughts help. I know exactly how you feel, though.

Richard

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Hey Mike,
The dr’s can often say ‘It’s not related…’ but I have often thought 'What if they’d scanned me earlier…?. If they’d found it earlier would I be in ‘this’ position? Yes, it may be 50/50, but which 50. Do you wait until it’s an emergency? Or do you try to manage it earlier? As the old proverb goes ‘Being forewarned is being fore armed’. And when it comes to your child, there are many things to consider. You say very sharp/bright and this is good, but the emotional challenges involved can be immense and not just for him but your entire family too.

I do not envy you at all and as my step-daughter is old enough ( and silly enough :smile: ) to make her own decisions, its way out of my realm.
BUT, (and here’s my take)
If he’s showing similar symptoms now, what was your progression like? you could try to keep an eye for similar symptoms, then act. Look, he could have a scan and it come back clear with a diagnosis of ‘Growing pains’. We can, often unconsciously, restrict certain activity out of fear or over-protection and I think that’s natural for a parent to do. You are obviously concerned and rightly so. I think the only way to get past that fear is to have the scan get the information, then work from there. Blundering through blindly is never good, get the information, then make a plan. The plan may never be needed, but if it is, you’re not starting from zero.

Hope it helps
Merl from the Modsupport Team

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Well, thanks for the two cents from both of y’all.

I definitely get the scan part. Bud, how glad am I that I didn’t know that this thing existed for 39 years - even with my bleed at the end.

I got to live like a normal person for that long. If I knew what it was way back when it was first seen, my whole life would be different.

Crap - :pensive:

I’ll just follow it through, not much else we can do.

Last nite again he woke up with a splitting headache when I was asleep. He woke my wife up around 4am & she gave him more Tylenol.

It’s been in the back of my head(ha ha) since my rupture. But, he had zero issues - now, almost 4 years later these headaches started rolling in.

It’s really a low blow for me. My own issues I have learned to live with, to a point - but, seeing him go through anything like this would be 100,000,000x worse.

This crap is so life altering, especially if diagnosed young.

My wife can’t even face it. . . She’s pretty close to refusing all possible testing. And, surprisingly enough - I can’t blame her.

Although a positive outcome would be great to hear - that it’s really nothing more than growing pains/headaches.

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Do let us know what you decide and we are (of course) interested to know how he gets on, hoping for something less worrisome to be a reason. Given these things are rare, there’s a decent chance it will be something completely different.

Very best wishes,

Richard

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Positive thoughts being sent your way, and particularly for your son. I remember clearly getting home form the hospital, my son was 11 and my daughter 13. This was a time when my memory was not great by any stretch. The thought that went through my head was that I was so happy it was me and not either of them. I know how you feel in that respect. The likelihood of a genetic connection is pretty low, and the genetic connection is usually associated to HHT. But most of us have learned there are no 100% of anything in our world! My fingers are crossed. John

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Hey Mike

Minus the ‘ha ha’ (which I understand) I’d have to say that’s the same for many of us with a neuro diagnosis. Those niggling little questions that just seem to float around, those odd aches and pains when we question ourselves “is that my head??” To have a child dealing with all of that can be a torment for any parent.

I think in her own way, in her own time, she’ll really have no choice. A child in pain can change the strongest of us. And a mother? A few nights of a child in agony, it will be front and centre. I completely understand her and your reluctance. I wouldn’t wish my situation on anyone, but let’s face it, none of us are here by choice, but here we are. You can’t ‘force’ her to think about it, it has to be in her time. I’ve ‘forced’ a point with people before and the reaction can be anything from tears to explosion. I’ve learnt it’s much better (and safer) to guide rather than force.

I don’t know if it helps but here’s what I try to do:

  • One step at a time.
    Don’t be looking away down the road. Deal with the now. I think it’s natural to be going straight to 'Worse case scenarios" but ‘try’ not to. I make that sound so simple, but I know it’s not. I’ve found I can get 10 steps ahead of myself sometimes, but I need to slow it way down. He may have the scan, which shows nothing. I’d strongly recommend waiting until you know what the scans show.

I say that party due to my recent medical episode, cancer was mentioned and the dots were all lining up for that diagnosis and that’s where I went (in my mind). Thankfully, the pathology came back clear. It was such a PHEW because I was already 1/2 way down the wrong path. I wouldn’t recommend that.

Like you say he’s a 12yr old lad, it could be all of those hormonal changes that happen to all of us. For some people they seem to coast on through, for some it can be a bit of a torment. It’s not uncommon for a period of headaches to occur for some people during those changes. For some of us the iron levels and calcium levels during those changes, to build bone and muscle, can be thrown way out of balance and (from experience) that can really mess with EVERYTHING.

And I think your about right, just follow through, that’s all any of us can do.
One step at a time.

Merl from the Modsupport Team

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Hi Mike,
My 16 yo son had a ruptured AVM in June of 2023. I sooooo wish we could have found out about it before the rupture. It would have been a scary diagnosis, but if he only (and I say only) had a craniotomy to remove the AVM (which I know some can’t be removed), he would not have lost his short-term memory. My son was a very good student. Took AP classes and even got 5’s on his AP exams. Very cerebral. He has had to drop all coursework with rigor and struggles with severe short-term memory loss, executive functioning, and slow processing. It’s so sad to watch, and his dream of what he hoped to study in college has had to change. We hope he can go to college. I say this to recommend having him tested any way possible. God forbid if he has an AVM, you don’t want it to rupture. It’s terrible and could be tragic. Either way, this is all very difficult. I wilsh you and your family the best as you navigate his headaches and your own past experiences. Best, Beth

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Hi Mike, Sorry for the late reply. The only proven link to passing AVM’s on to children is through HHT (Hereditary Hemorrhagic Telangiectasia) this normally manifests itself in AVM’s outside of the brain and there is a genetic test you can ask for to rule this out. My daughter had this raised what looked like blood vessels near her artery in the neck. The fact I could see a slightly raised blood vessel type thing on her shoulder/neck concerned me SOO MUCH !, through my own AVM Journey Ive learned (this was VERY tough) To not worry about things that are unknown. So in my daughters case there was a birth mark specialist and we were asked to see this person first they told me that it was a type of birth mark and would go away after about 1 year, It took longer but did go away (meaning its no longer visible) They did a scan on it and the scan came back “clean” so all good. I do not even think of it any longer and had forgotten about it till this tag :slight_smile: , please do try not worry about things that are not proven, even a simple google search and I never promote google searches since they are mostly negative, but last time I checked even google states that AVM’s are not hereditary . So in short till you know for sure, dont invest your energy into even these thoughts as hard as it is. Focus soley on your problems that are in front of you at the moment, The key to recovery is rest and sleep (when the body heals itself) I hope this helps you a little, But this journey to making you mind shift in thoughts is your to take and its hard to do. but very much possible.

Make sure to get him a scan to try find the cause of his headaches, these could be as simple as knowing you are going through a tough time and stress related. Eye sight or another … hold your worry till you know what you are dealling with and please do let us know when your ready.

Regards Martin.

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I totally get what you are saying!
That’s my biggest fear too.
All the doctors I asked said that isn’t genetic and my my sister and husband(who’s uncle has an AVM) have been tested and are ‘clean’.I want to test my son so bad but he is very young.
From what you are describing the symptoms I mean ,the AVM has to be in the same location to have the same symptoms right ?What are the chances? In your place I would do the MRI just to be sure.

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Hi Mike,

I have been fairly recently diagnosed and still don’t know what treatment is recommended but have been lurking on the site and I signed up when I saw your post. I just wanted to say that there is another genetic condition that can increase the chances of developing an AVM anywhere in the body called CM AVM.

My son has marks on his skin. After a second trip to the GP about it we were referred to the dermatologist who recognised it, despite it being rare. After genetic testing, he was found to have a mutation in the RAS1 genes. He has had MRIs which do not show any AVMs currently but he is being monitored because of the hypothesis that hormones can cause them to grow - and he is just about to hit puberty.

The rest of the family was genetically tested for the condition and I was found to have the same mutation. They have since found a large AVM in my cerebellum (I won’t go into my medical dramas of late). But I wanted to say - I completely get how you are feeling. In many ways, I wish we hadn’t learned all this from marks on his skin - ignorance is much easier. However, I think young people must have a much better chance if things are discovered whilst they are young - before AVMs grow or aneurysms develop (as with me), plus they heal from any treatment so much more quicky. So although you are probably petrified and don’t want to get him scanned I personally would. You already have that fear that there is something causing the headaches so you wouldn’t be saving your family from that worry- but you are excluding that chance of doing anything to treat it.

It is obviously all your decision - but I just wanted to mention about CM AVM as there is a 50/50 chance of it being inherited (my son has it but my daughter doesn’t). However, not all AVMs are caused by the condition by a long way. Fingers crossed you have just been unlucky and he is fine.

Hope I have helped and not made it worse.

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There are other genetic variations that bring AVMs. We have at least two other genetic variations that I’ve seen identified in this forum, though the number of times I’ve seen them mentioned is what my doctor would have called vanishingly rare.

It is still unlikely that Mike’s young man has an AVM.

As with everyone else, I hope my thoughts do help. It’s a tough situation however it plays out.

Lots of love Mike,

Richard

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I would at least bring him to see a neurologist. He could be having migraines, but I think his symptoms certainly warrant a work up. Even without your history, it’s not something I would brush off.

My daughter was 6 months old when we found out that she had an AVM. I pushed for her to have an MRI to find out why her head circumference unusually large, despite being told I have a big head lol, and despite her normal development. She ended up having a pial AV fistula that had created an 8 cm aneurysm. Due to the anatomy of this aneurysm, they felt it would have ruptured sooner rather than later and would have been “catastrophic”. She might not be here today if I never pushed for the MRI that led to her diagnosis and surgery. Sometimes you have to listen to your gut feeling… I totally get not wanting to know. I HATE every follow up mri and angiogram, I dont want to know because I don’t know if I could live through that again. I have to live with the anxiety that comes along with this being a part of this group, but I would 100000% choose this over the alternative.

Although I think the odds of you and him having congenital AVMs are low, we do not know all there is to know about genetics at this time. My daughter had a pial AV fistula and her first cousin had a cavernous malformation that ruptured at a young age. Both negative for any genetic cause… at least for now.

Good luck and I hope if you decide to do an evaluation that you will get good news :two_hearts:

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I understand what you are saying from the other side. I had a ruptured AVM in 2014. I was further along in my life (35 years old) but I still dealt with the same issues. I struggled so bad with my memory. The day I returned home from my surgery, my kids went through the whole house marking things with post-it notes (like door, fridge, table, etc…) because I could not remember what anything was called. I remember a time when I was at therapy and they wanted me to count money. I was an expert at math but I could not even remember how to count money or how much it was worth. The struggle is real!!! I never thought I would go back to work. In 2017, I started working again part time. By 2019, I felt I was ready to go. And believe it or not, I went back to work as a 6th grade science teacher (never been a teacher). What I have to say is it takes time. I struggle with so much still today but I have let my students know what I struggle with. They have no problem telling me what I said or did wrong (sometimes they like it to much-haha). I have a new life and had to adjust. At times, I feel mentally stupid but there are other times where I say, “I can not believe I remember that”. The rupture happened and my life has been forever changed (not to mention my families life changed-especially my wife). I have learned to accept what has happened and move forward the best I can. Yes life is deferent, but it was what God wanted. I have learned that it is ok and try to make the best out of it that I can. Keep moving forward!!! It gets better.

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I’m sorry to hear this & it’s been a huge fear of mine also.

Like you I got to 30 before I discovered my AVM, which subsequently bled & resulted in craniotomy a month later… my 10 year old son has had very bad receptive memory since he was very small & it just got worse over the years… of course I panic & think the worst & everyone wanted to have him have a scan due to my AVM history but I was very against it… I thought he was too young to be burdened by this thing at such a young age & felt it wasn’t fair!

Long story short my wife persisted & we did get one done, which came back clear… but I tell you I was a wreck on edge during this process, so I understand!

It does suck but maybe for him you need to get him checked out so you can get that peace of mind like I did… our AVM trauma has indirectly blinded us to the responsibility as a parent & it sucks… if you had never gone through the AVM thing you’d take your kid to the doctors immediately to get him checked with no hesitation!

It’s such a difficult time but just be strong & have faith man… sending prayers your way that your son is fine… God bless!

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Thank you for the replies,

My son seems ok now, and his PCP is supposed to set up a follow with a neurologist. My wife is kinda pushing away from it & hasn’t followed up for a referral yet.

When he was having issues here recently, I said to just get into Phoenix Children’s hospital since Barrow has a wing there. But, he just went to his pediatrician. His pediatrician lady did say that my AVM type isn’t usually hereditary. But, the word of a regular PCP doesn’t mean too much to me. Since they hardly ever even see an AVM patient.

But, yeah - it sure freaks me out after going through this all myself

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I think it depends very much on the PCP. One of my GPs got very upset with me when I assumed once that he would know less about a condition than a specialist in the hospital. The sense of what he said back to me was that general practice is about being a master of everything (and therefore he reads very widely in order to do general practice effectively) rather than being a jack of all trades*.

But I’ve had a diverse experience with my GPs. They are definitely not all the same.

*I assume this phrase translates to US English. The customary phrase over here is “a jack of all trades, master of none” where one spreads oneself so thin across a discipline one has an appreciation of many areas but in reality not in command of any of them. At work, I indisputably became a generalist in IT (and master of very little)!!

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I had two PCP’s since my hemorrhage in 2020 - never had one before

The first one came out & said it - I’ve never had an AVM patient

Then he dropped me because we got into argument over something, now seriously I can’t even recall what it was.

My 2nd PCP is alright, she just prescribes whatever I ask for within reason. She’s a nice lady, but a so so MD at best. She also trains residents from a local medical school here. I’ve had 3 residents & her now just ask me odd questions - wow, we’ve never seen a living patient with a AVM :face_with_raised_eyebrow: one said they seen one but they were elderly.

So yeah, I’m more of a science experiment. At least at this MD’s office they’re nice about it.

My wife is slowly setting up the neurologist follow up now. Thankfully my son seems just fine right now - no symptoms at all :pray:

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Just got out of an appointment with a neurologist for my son. . . Now I’m getting him ready for an MRI - She said that kids are usually better being sedated, but it’s not a necessity if he can get through it without - I prefer him being off meds

Talked to her quite a bit - She said I was definitely a special case - Considering what happened & the first embolizaion getting me to 100% occlusion.

Living 20 mins away from BNI makes life so much easier. . . His MRI will be done at PCH - which are all within 5 mins of one another.

Her hope is to find nothing, but considering the direct relation to me - MRI with contrast stat(I figured it’d go this way).

Hoping for the best! Definitely a big day for my son, considering today he had neurologist appointment & now he’s off to paly in his first big stage orchestra concert.

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