Any experience with TBI as a cause of AVM?

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Hi all,

I guess I should start with my story. Sorry if it is long and confusing, this is new to me.

3 weeks back I was taken to the ER for a random allergic reaction. As a side note, I’d never had one before and those things are intense! Much love to my friends who need epi pens. Anyway, the NP in the ER stated I had the allergic reaction only on my left side. I was sent for a CT and an incidental suspected AVM was detected in my front right region. I was sent for a CT with IV contrast and no bleeds were identified but still stated a suspected AVM and I was sent home with a neuro consultation. On the civilian side, the first available appointment was in April due to COVID but luckily the VA was able to expedite an MRI Angio by the end of the month. Coincidentally, a VA radiologist read my CTs from the ER and agreed with the suspected AVM.

Now for the fun part. I have a mountain of questions and even just writing this out has decompressed some of that bottled up anxiety I’m feeling. If anyone is willing to chip in and help explain all this to a knuckle dragger like me, I’d be forever in your debt.

I’m hesitant to even write because it’s still just “suspected” and from reading posts, you all have been confirmed and long time livers of this craziness. I never want to make a post seem like “look at me” so apologies if it does.

As for this suspected AVM, I have had no symptoms of an AVM until I was in my late 20’s, early 30’s. One day my left arm went cold and I went blind in my left eye. After my vision came back, the worst damn headache of life happened. Eventually, it went away and I chocked it up to sinus pressure. They kept happening and I never went to the doc for them. I haven’t had one in a few months but it just became a part of my existence. Always thought it was sinuses. And maybe it is, again “suspected AVM.”

Are occular migraines a common symptom?
Is white noise in your ears also associated?

I’ve had 3 TBIs in my life (all in the military). Prior to the Army, I never showed signs of an AVM. So growing up there was no need for an MRI.

I’ve read AVMs are congenital, could they also be head injury related?

Last question, am I making a mountain out of a mole hill thinking this might be an AVM/AVF? I dunno, maybe I’m hoping one of you will say “in my experience, what you described is NOT anything like an AVM” then maybe I’ll sleep better. It’s the suspected and the wait that is killing me.

Thanks for any help and just letting me vent,

Rooster

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First off, thank you for your service! Welcome to our group, and sure hope we can help. I was 48 when my AVM was discovered as a result of a bleed, no prior indication that I had one until it decided to show itself. So not uncommon to not know its there, and I was a really active guy. I have never seen anywhere they are anything but congenital, and never that a TBI may cause the development of one. That is me, so certainly not absolute but I haven’t seen otherwise.

I have not had experience with migraine’s so will leave any word on that to others. I do have tinnitus and pulsatile tinnitus, My pulsatile tinnitus has changed since my AVM has been obliterated but can hear it at times. Any word on getting an angio? Take Care, John.

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Thanks for your reply. You’re probably right and if it is there, I was likely born with it. I’m just surprised after 2 injuries at the exact location, it never bled.

I’m scheduled to go to the Daytona VA at the end of the month and get a MRI and MRA. They just told me to expect to make a day of it. Is that the same as an angiogram?

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MRA in a type of MRI that does look at the vessels, an angiogram uses a catheter. They are different, I have had both but here the angiogram was what they relied upon. My AVM was quite small and they had trouble seeing much with the mra.

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Hey Rooster,
Welcome to Ben’s Friends
From one ‘knuckle dragger’ to another, the whole neuro process can be daunting to say the least.
Even if it is “…just ‘Suspected’…” getting yourself informed is not a bad thing. I’m not saying we have all of the answers but who better to ask than people who have been there themselves, so please ask away.
With a lot of these things location and size can play a major role. Some people can have them all of their lives and never know (non-symptomatic). For some they’re found incidentally via dental scans

Are occular migraines a common symptom? For some, yes.
Is white noise in your ears also associated? Again, for some, yes.

I am yet to hear of 2 people who have exactly the same diagnosis and surgery come out the other side with exactly the same effects. There is no set pattern. Some people can bounce back miraculously, for other things can take longer and for others it can take much longer.

For many years prior to my own situation I worked with people with brain injuries and I have not heard of any confirmed correlation between AVM development due to a prior TBI. I have heard of people querying this before but never been confirmed.

“…am I making a mountain out of a mole hill thinking this might be an AVM/AVF? …”
In my humble opinion, no, you are concerned and trying to find information. That is not ‘making a mountain out of a mole hill’. That’s keeping yourself informed. Try to look at it from the opposite angle ‘Is ignoring it all or burying your head in the sand’ going to help? For some people not knowing may be ‘mentally safer’ for them and we understand that, but if you are here looking for answers, that’s not you (It’s not me either). When my brain diagnosis was first made I went looking for answers too. The net was all new back then and there was no ‘Ben’s Friends’, trying to find answers was VERY difficult. The textbooks don’t come anywhere near close to the reality. The networks just weren’t there. There are lots of people here with lots of experience, personal experience here, so if you have questions, you ask. We don’t have ALL of the answers, but if we can help, we will.

As for venting, it’s a must. If we hold all of that pressure inside, we’ll explode and that’s not safe for anybody and what better place to vent than with people who have been there themselves, so you vent away.

Merl from the Modsupport Team

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Merl,

No one has yet to develop and app or machine that let’s someone virtually hug another person and that person feel it. Also, I’ve never been a hugger. (insert faux manly noises like spitting or farting) so here is a :raised_hands: and a :beers:

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That was really great info and EXACTLY the words to calm the tornado of emotions. Thank you in all seriousness.

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Thanks for the clarification. I pulled up the details and this is the appointment notes:

MRI HEAD W/C & W/O, PT AGREED TO D/T,
MRA HEAD W.O, PT AGREED TO D/T
ANG HEAD P.O,

The first two are in one location and the other is scheduled for that day but I don’t know the location. My wife thinks P.O. may mean per order or something.

That’s the status so far. Obviously I’m hoping this was all a misunderstanding and there was cream cheese on the radiologist’s screen(s) but man do I feel for anyone with this, the waiting is the absolute worst!

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@Rooster

Welcome to AVMsurvivors! It’s good to have you and it’s a place we all arrive with a ton of questions!

Like you, I discovered mine before it bled and, when we compare ourselves with those who’ve been through the mill of a bleed, it feels like a trivial thing to be worried by but honestly it’s a very worrying situation to be in. Very easy to let your mind race off and worry about “possibilities”. Some of the folk round here who’ve had a bleed are kind of grateful to have missed out on all the worry because it just went pop and they don’t remember any anguish – it was their family that worried about them rather than being worried themselves.

Anyway, my point is that actually it’s the mental aspects of many things in life that are the more insidious: seemingly benign or easy to deal with but actually possibly more difficult or dangerous, so don’t feel at all that you shouldn’t share how you are, what you’re thinking, what worries you etc because that’s just as much what we are here for as anything.

I find it amazing that by typing bare words we can help each other significantly with these things.

Richard

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Richard,

Thanks for your perspective and taking the time to, not only write back, but for the compassion expressed.

All this has been a pretty intense eye opener. Someone (me) can go their entire life being angry and a dick and take people, places, and events for granted and one day they say your head is busted. It’s the karmic face slap I think I needed to be a better human The world can go kaleidoscope sometimes, can’t it?

I’m thankful it was found and very much appreciative it was found before a bleed.

I’ve been going through the rolodex of head issues I may have had in the past that may have been a significant enough flashing light that I should’ve gotten checked. So far I’ve remembered these, anyone else have similar experiences?

  • One random day when I was 26 or so, I got the worst headache of my life. It very much felt like after a concussion but more “ratchet strappy” - Sorry, best I could do for comparison. I wanted to go to the doc but any movement or light would make me throw up. Any movement was like glass breaking in my head I stayed in bed for 2 says
    I was never prone to headaches before. After that headache, I started getting what WebMD calls occular migraines. But I always attributed it to sinuses.
  • One of my legs will just go limp for like a split second. Like my leg is laggy. No idea about that one but it’s been the trigger of some epically funny falls.
  • Mood swings. Lately it’s been like I’m Claire Danes “who’s is Brody working for” type manic. One hour I’m 10/10, others I’m 1/1. It goes from Disney to Death Metal pretty quick around here.

I just want to say thank you to everyone. You guys are seriously making this easier to manage. Peace and love to all of you.

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You can get all sorts of effects with migraines – things that happen in anticipation of the migraine proper, and things that form the resolution of the migraine. You can even have the “prodromes” or “aura” (the things that happen at the start of a migraine) without further progression. Some of the weird stuff you’ve got sounds a bit like that. If you’ve got some TBIs, it could be to do with those or with your AVM. Anything that upsets the brain seems able to drive migraines (or migraine-like symptoms).

I’d say we also have some members here who are bipolar and I’d say your mood swings sound a bit bipolar. So you’re among friends. Good to meet you.

Richard

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Ohh Rooster, Boy, do we know that ‘tornado of emotions’? And I can tell you, ‘That’s Normal’. I had the medicos, just sort of casually tell me ‘Well, you have this thing growing in your head. Ohh, but don’t worry…’ DON’T WORRY!!! How on earth do they expect to give us such information then walk away saying ‘Don’t worry’. My stress level went from 0 to 100 at lightning speed just in being informed, then they say ‘Don’t worry’. TOO LATE.

DickD talks of ‘Bi-polar’ and without the medicos giving us partial information, I’d tend to agree. But when they give us only part of the information, as they did with me, my own mind took me from ‘It’s all OK’ to ‘OMG x100’ and back again, over and over (and over…). Part of their theory is that the less information the patient has, the less stressed they maybe. For me, personally, this couldn’t be further from the truth. I was a bloody mess. I had all of these questions, what I call the ‘What if’s…?’ ie what if this happens? What if that happens? All of these questions, but no answers. And with ‘No answers’ those questions just kept rolling over and over. No wonder I was a bloody mess. The medicos deal with this sort of thing every day, it’s normal for them. You and I don’t have that luxury. This is FAR from anything like ‘Normal’ for us and we then have to manage the range of emotions associated. I can certainly see where DickD is coming from with bi-polar, but I also know I was up, I was down, hell, I was even sideways just in trying to process it all for myself. My mind just went to moosh. If I’d stayed in that mindset, then, yea, it could be seen as bipolar, but what I ‘try’ to do is think of things logically. '‘What information do I need?’ ‘What needs to happen?’ ‘Who do I need to see?’ ‘Now, make it happen’. This assisted in taking my focus away from ‘my head’ and turned my focus to ‘a plan of action’.

" …like I’m Claire Danes." Ohh, so you’re rich and pretty :laughing: :laughing: :rofl:
I too have that ‘One hour I’m 10/10, others I’m 1/1’. I call it my symptom seesaw, up, down, up, down… I was trying to get myself to 10/10 as a regular and try as I might it just didn’t happen. I’ve now come to (semi) accept, if I can keep my symptoms around 5/10 I can manage OK. not great, but OK. Aiming for 10/10 everyday was making the downs much worse and the ups fewer and further apart. Don’t get me wrong 5/10 still isn’t great, but it’s much more manageable.

DickD states “You can get all sorts of effects with migraines” and I have to agree 100%. When reporting my symptoms I’ve had medicos tell me “Well, THAT just can’t be happening…” but it was. I am yet to hear of 2 patients have exactly the same symptoms post surgery. Those micro fine neuro circuits have been disturbed, that can send misfires through out the whole body. It can take a while for some of those ‘oddball’ symptoms to settle.

Merl from the Modsupport Team

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Hey Rooster. Sounds like a pretty confusing situation. Especially when trying to navigate brain issues, with brain issues.
Absolutely on the tbi question in my case. This AVM was slowly choking my brain out over decades, a seizure, hitting my head and several radiation changed me . After a few years I’m beginning to understand the affects of it all. But I am happy and grateful to be alive…with some answers too.
I wish you luck on your quest to find yours as well. Bri

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Welcome @Rooster to the family… In regards to your situation and questions I can confirm I had no symptoms until I had a week long headache at 30 and had a CT as a precaution to find out I had an AVM, funny enough the headache was not related… 1-2 months later after my AVM diagnosis I had a bleed.

I have had eye migraines after my surgery that occurred maybe 3-4 times and were scary for me at the time… They made my vision blurry and happened once I returned to work just as I was trying to get back into life again.

I had my AVM removed in 2011 and in 2020 just before COVID I had a standard follow up MRI which reported my AVM had returned… an angiogram later revealed it was incorrect and there was no AVM reoccurrence… I mention this as there are times they can still get it wrong from time to time… keep us posted on your journey and sending prayers your way… God bless!

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I will try and make my story short. Several
Months before my 60th bday. I had unexplained headaches at night, so bad I thought o don’t know how I could ever live like this. Now I am not
Prone to headaches. They lasted for 2
Weeks and just stopped. I have worked out 4-5 days a week since I was 20. After waiting a month to get into a specialist/neurologist and a one mri later I was diagnosed with an AVM, an a small aneurysm. After an angiogram it was determined it was a grade 1. So after almost 3 months of scheduling procedures etc. I chose a radiation. 1 time high dosage. A couple of small side effects but after several months I am
Ok and praying that it works.

So the doctor said the AVM may not have caused the headaches. But so many nurses have told me most
Patients have experienced many of the same
Symptoms. So I do believe after my experience that this AVM I was born with and never knew it something changed which brought on the severe headaches. No one can convince me
Otherwise.

I hope this helps you.

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Welcome Patrice! Thanks for sharing that. I had one dose gamma knife and now it is obliterated. I was 6 months from bleed/diagnosis to gamma knife. Time is challenging for sure, when is your next follow up?

I hope Rooster gets answers on his follow ups in a couple weeks!

John

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Hi ! One year, I had radiation November 2021 so November 2022. It’s taken an emotional toll more than anything. However I am
Learning patience.

Did you have side effects from the GK ?

Thanks

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By the way congrats I am
So happy for you !!

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First of all, no worries for the long email, the more info the better and the more great feedback you will get, I am 100% sure of that.

From your message:

“As for this suspected AVM, I have had no symptoms of an AVM until I was in my late 20’s, early 30’s”

Feedback.

There is no warning in any way or form IF you are not aware of it. My daughter (17 years of age at the time) was fit and healthy one day and the next day she suffered a seizure / AVM bleed out while exercising and was rushed to hospital , CAT scan, MRI and straight into surgery. We are still working with rehabilitation, and this is from back in May 2020.

Looking back you could argue that maybe some of the headaches she had, feeling nauseous… but as you , you just wrote it off to something else. Why would you suspect and AVM… you do not just decide to one day out of the blue to have a CAT or MRI scan to check for an AVM, especially if you had no idea.

And lastly I can only encourage you to try and be patient and wait for the prognoses to come back from the doctors. There is so much out there online it is difficult to get a concrete reply and there is always something that is similar to what you have experienced. So as difficult as it is, I can only encourage you to wait for the professionals to get back to you.

On the positive side, you have now been for the tests and that is great. It is better to know than to ignore, at least then you can do something about it.

Stay positive, be safe and all the very best to you.

Nick

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No side effects from Gamma, a couple from the bleed but all manageable. I. ad a little swelling about 6 months and some “ice pick” head aches but all subsided on their own. My swelling did not need medication, was more heavy feeling and lasted only for about a few weeks to a month. John.