AVM Rupture June 6th, 2021

Hi there,

I’m 18 years old, my AVM rupture was on June 6th. I couldn’t walk, talk, or swallow. The AVM left me with stroke like symptoms. Although, I wouldn’t really call it “symptoms” because what I have, and many of you others have, may last a lifetime, or for years to come.

I was wondering about if I should have an angiogram, the side effects are scary, and I’m already traumatized enough as it is. They did a CT scan around 4 months ago, maybe less, and they also did one in September. Well, that one was because I thought my body was telling me I was going to have another stroke. My entire body went numb starting at my neck and working itself down. They also had me do an MRI, they found nothing but some fluid, which is normal.

So, should I get an angiogram? All advice is welcomed!

Thank you.

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You’ll find we have a lot of experience in this group, and while we share a lot of similarities, we all are different. Seems contradictory for sure, but these things are complex, no matter where they are located. Mine was in my left temporal which was discovered when it bleed, this was 2016. I had gamma knife 6 moths later and after 27 months was advised it had been obliterated.

I have had three angiograms, and a whole bunch of MRI and CT scans. For brain AVMs, the angio is the “test”. It is the one that tells the Dr. everything about the AVM. I did not have any ill effects from mine, the hardest part was staying stationary on my back for a few hours to make sure it sealed. All three of mine were from the groin but I know they are now doing more and more from the wrist.

I would certainly have a good conversation with a Dr. who knew something about brain AVMs. I would be astounded if the angio was not first on the list to do. Take Care, and its great you found us. John.

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Hi there @msngpcs ! Although I’m no doctor, I would say the option on what to do and not do is your decision. In my case the first time I had a brain bleed I had no warning and it just bled. Fast forward 10 years and I did have warning about another AVM the doctors had discovered but it bled before I could be scheduled for surgery. Fast forward 9 years to 2019 and I had a stroke out of the blue. My point is, although I was advised after the initial bleeds, ultimately it was up to me. Now, 21 years later, I periodically get scanned because I don’t want to have another brain bleed cause it will probably be my last. Again, that’s in my case and I’m in no way giving you any medical advice because I’m no doctor! I do hope you have a wonderful holiday season!

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Welcome! My story is on here somewhere, haven’t had a chance to sit down & do an update tho

Very sorry to hear - age wise for sure, even more. I didn’t even know I was dodging this bullet for 39 years. But, understand - it is possible to make it through - I’m living proof

I’d suggest getting yourself into the best care possible. You need a thorough “inspection”, diagnosis & plan of action. < easier said than done, I know

If it wasn’t for my neurosurgical team, no way I’d be the way I am today.

All of my work was performed by Barrow Neurological Institute in Phoenix. There aren’t many that can stand up to their expertise for folk with “our” probs - there are a few others. But, I stand behind them - they saved my life

Not sure what else to add, but this community has been a ton of help for me.

:pray: for you brother!

My avm ruptured right before new years last year but no where near as bad as yours I stilled stayed at work for the whole day not knowing what had just happened ans I had all up about three angiograms with no side effects so all I can say is to do it because if you need to have operated on it will help them to no end but like I said mine was no where near as bad as yours

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Hello I just read you had gamma knife I am supposed to have this in January for the 2 percent of my avm the dr could not get with embolization.
What side effects did you have if any ?
I am very nervous about having this . Any help would be great . Thank you

This is from a neurosurgical team but always consult your doctor for your particular situation.

Blessings as you continue!

Chloe, I had very little effects. Mine were mostly bleed related. At bout the 6 month mark I had some swelling but not to the point of needing medication. I also experienced “ice pick” head aches, where there is a sharp sudden pain, last very short period of time and then gone. I had these over a period of time, every now an again. Then they disappeared. This was around the same time as the swelling. Scared me the first few times but got used to it. Really that was it. John

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Thank you my avm never bled I was very lucky . Was only doing for an mri because my ear was ringing so bad. He got almost all of it I have 2 very small veins left and they want to do gamma knife on .im still not sure or ready to do this but I am looking for some positive outcomes. Thank you

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Hi there, I’m so sorry that you’ve been through so much at such a young age. My son is 29 and he had a serious rupture of an undetected AVM in February 2021. He has been in hospital almost 8months in total this year. He has difficulties with his short term memory and difficulty with other parts of his cognition. He has made a good physical recovery given the extent of the bleed and size and location of his AVM. He has just had come out of hospital after having extensive investigations including MRI of his brain and spine, MRA and digital substraction angiogram with no side effects. He was scared like you but relieved to know there has been no new bleed and no change to the AVM blood flow. I showed him your post and he advised to get the angiogram as it will give you factual information about what’s going on. Best of luck to you. Our thoughts are with. Orla

Go to Barrow
Don’t waste your time

Cedars is also good

Very few places

What do you mean don’t waste your time you mean with radiation. I have heard so much about Barrow I will look into this for a second opinion.

I don’t think @rafarataneneces responses here and in another thread are especially balanced or helpful. While he has had a difficult time with embolisation and has finally been sorted out by Barrow via a craniotomy, it is important that everyone assesses their own case with their own doctor – what has worked best for him may not work best for me or you.

So do make sure you use your own judgement about the course that you are taking and what the doctors you are seeing are recommending for you.

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Oh I realize that I wasn’t sure what he was talking about. I so far have had great response to embolization. I was just looking for radiation thoughts that’s all .

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@msngpcs

How are you feeling about the angiogram? I’d say an angiogram is probably necessary in order to understand exactly the physiology of what’s going on with your AVM and I’m pretty sure we have all had at least one angiogram.

I agree it isn’t without risk – it can possibly block an artery temporarily giving you an ischaemic stroke, or tear the artery wall and give you a haemorrhagic stroke, and it can cause some trouble at the insertion site – but I tend to look upon these things as necessary risks in order to find out enough about what’s going on. I assume that the risk of something going wrong is pretty low and therefore it does make sense to take this risk in order to assess how to deal with your AVM and remove the [larger?] risk that that poses to your health.

Honestly, you’ve gone through way more, having already had a stroke. Remember it is only a risk of untoward things happening, not a guarantee of bad things happening.

For myself, I’ve had three angiograms so far – the first when I had an embolisation procedure to glue up my AVM, a second about eight weeks later when we looked to see that everything was ok, and I had a third one a year later to check that everything was still ok. I’m a complete wimp and yet got through each of them fine. I think it is an interesting experience to go through and hopefully the doc will show you pictures that will show how detailed a view of your arteries he or she can see.

I think it’s an important step and commonly the preferred medium for examination of an AVM.

If there’s any way we can help you be more comfortable about it, just say.

Best wishes,

Richard

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Hi Richard,

I’m going to get the angiogram. It’s scheduled December 9th.

I’ve been reading all your messages and those of the people who commented back to me, and after reading Chloe’s message I began to notice how my ear is ringing too. Although, I’m not sure if it’s just paranoia, I figured the best way for me to tell was getting the angiogram done. Forgive me for not reaching out, but I was worried about my left ear ringing.

My reasoning for not getting the angiogram was, “something rare already happened to me, who’s to say something rarer couldn’t happen to me”. I know you, and everybody else have more knowledge than me and that’s why I asked you all. So, thank you for the responses, and thank you Richard for checking in.

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It’s very easy to get a bit paranoid, so don’t feel you’re alone in that at all! Tinnitus is a pretty common effect of stuff going on in your head. I had something called pulsatile tinnitus which is basically a whoosh sound every time your heart pumps. That’s definitely a worrisome sound; I think it is less clear what regular tinnitus ringing is caused by.

Have a good day on 9th. Relax. It’s only pressing down afterwards on the wound made to insert the catheter that I think is really uncomfortable. Other than that, hopefully should be an interesting visit.

Feel free to talk as much as you like. It’s what we’re here for.

Very best wishes,

Richard

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A tad crude from the other fella & quite off key

But, man - BNI is something else. Everyone in the medical profession, seems to agree.

My only .o2 is; I wonder if they would/could attempt another embolization for the remaining percentage - or, would they also go/suggest the GK route

Whichever way, sounds like you’re doin quite well - and, yes - radiation/GK still scares the day lights out of me

Wish u the best :pray:

As far as ear ringing - is it a “ring” or more like a hum? I’ve had this for about a year. When I was first released, it was a hum - like an electric transformer in the left side of my head - it made it difficult to sleep & gave me anxiety. But, over time it truly went away :pray: Richard was on point with “give it time” I’m almost to 17 months post procedure & I feel better than I have in a decade - I overlooked so many odd issues(odd loss of peripheral vision, tension head aches, migraines, etc.) < all gone! My wife gets more headaches than I do now(although, I think I’m the cause of most of em) - but, so far - I couldn’t believe I could ever feel this well over a year ago.

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