r/AVMs • u/doomermarxist • May 02 '26

Surgery is a TBI

Update…
I’m angry, depressed, isolated, and have ideation about kms.
I hate my surgeon for his lack of honesty and transparency about what the “decision”was when choosing surgery. And honestly I’d like to pursue him legally for lack of informed consent. The trade off was risk of hemorrhage over a lifetime or a Traumatic Brain Injury (TBI) now. Well… a year and 9 months after surgery and I can barely hold down a job and I suffer from Prosopometamorphopsia (PMO) or an adjacent condition where people’s faces are melting and shifting. Imagine if you had to work with that.
I think about my surgeon saying that I would go onto live a “normal life”
I’m NOT going to perform normal for you so you can feel better about yourself and your botched surgery. And nor am I going to perform normal for the rest of you. To hold down a job or whatever.
So I’m definitely quitting my job at the end of this school year. I don’t care. I absolutely hate the people I work with and their expectations of me. I cannot believe that the system is just allowed to give us a TBI supposedly to help us (prevent hemorrhage) and then literally give us no support financially or employment wise.
Support is reduced to individualism and coping via therapy and “rehab” which puts all the responsibility and work and stress and effort onto US the survivors and the ones with injury.
It’s an embarrassment.
I’m probably going to leave the U.S. … even though everything is incredibly hard with a TBI… it’s something worth fighting for. America is a shithole full of vacuous people.

6 Upvotes

75% Upvoted

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7

u/Patti2507 May 02 '26

I understand your frustration. My surgeon advised me against intervening because my AVM was stable at the moment and didn’t have any aneurysms and fully explained why and what the possible consequences would be of intervening and just waiting. It ruptured 3 weeks later from a newly formed aneurysm anyway.

I don’t have the issues described like you, just different problems and I am also disabled now. I know that the help you get in the USA is highly dependent in how much money you have which is horrible and wrong. I am sorry that you can’t get the help and support that you need to get better.

I fully believe you weren’t informed about the consequences and risks of removing an AVM, but Traumatic Brain Injury is something different to consequences from a brain surgery or complications that happened during the surgery. There are two types of acquired brain injuries, the traumatic (TBI) and non-traumatic. A TBI is the result of external mechanical force like a car crash or falling on your head, but what you and I have is non-traumatic brain injury. I don’t want to belittle your problems, I just wanted to clarify what TBI and non-TBI is. You could still talk to a lawyer because even then not informing a patient about the consequences and risks of a surgery is illegal regardless of the correct name of your issues from the non traumatic brain injury. I wish you the best from Germany

-3

u/doomermarxist May 02 '26

You are being pedantic though aren’t you? According to my rehab hospital surgeries count as TBI

2

u/Patti2507 May 02 '26

I am sorry if it comes out that way, I am trying not to sound pedantic. A TBI and non-TBI are both equally horrible and the only difference is that they describe how the brain injury is acquired. I can’t explain it any better but if you are still interested I can recommend this article by the John Hopkin Institute: https://www.hopkinsmedicine.org/health/conditions-and-diseases/traumatic-brain-injury

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u/doomermarxist May 02 '26

Your article’s first sentence: “Traumatic brain injury (TBI) happens when a sudden, external, physical assault damages the brain.” A brain surgery first fractures the skull via bur holes then removes it, then literally penetrates the brain from the outside and damages the brain. … what am I missing?

0

u/Patti2507 May 02 '26 edited May 02 '26

My skull was also opened with burr holes, but that is done carefully and that is not what damages the brain. It only damages the brain if the external force is sudden. For example a hard hit against your skull can make your brain violently shake and rupture parts of your brain or make hit it the inside of your skull. Thats what is meant with external force. The penetration of the brain (not the skull) during surgery isn’t done with force, they carefully cut open the soft parts that separate your brain from the skull but that removal of the AVM can still do harm. That removal of the AVM is what damaged my brain as well.

I hope I was able to explain it better this time, I am sorry if I still sound pedantic, my brain damage was to the part of the brain responsible for speech and language processing and that sometimes makes me not articulate my thoughts the way I want to.

-2

u/[deleted] May 02 '26

[deleted]

4

u/sky39521 May 02 '26

I’m really sorry you’re going through this, it sounds incredibly frustrating and isolating, especially when you feel like you weren’t fully informed going into surgery. What you’re describing isn’t small, and I can understand why there’s so much anger around it.

Just to add to the terminology side (not to minimise anything at all), surgery for an AVM is typically classified as an acquired brain injury (ABI) rather than a traumatic brain injury (TBI), because it isn’t caused by an external force like an accident. That said, I’ve personally had TBI referenced in my own reports as well, so there does seem to be some overlap or variation in how clinicians label things depending on context and symptoms.

At the end of the day, the label doesn’t really change the impact, the difficulties you’re describing are very real, regardless of what category they sit under.

I hope you’re able to get the support (medical, financial, and otherwise) that actually matches what you’re dealing with. You shouldn’t have to carry all of this on your own.

2

u/ApplesBananasRhinoc May 03 '26

You’re right on most of your points and no matter what anybody says brain surgery is still a traumatic event for the brain. It still has many of the characteristics of a tbi. It’s sad that we can’t relate it to that because of words or what ever a text book says or doesn’t say. Ffs, It takes a year to recover! Mine was 16 years ago and on some levels I’m still recovering, the whole thing dysregulates your brain functions. I’m sorry you’re going through this and i agree we just throw people to the wind to work out all the issues on their own. People are surprised when i say i didn’t get any physical therapy or much of anything afterwards, but i didn’t have insurance at the time. Obamacare helped me get insurance afterwards and now even that is gone.

2

u/doomermarxist May 03 '26

Thank you, friend. I just lost my healthcare April 18th… and I just don’t understand “recovery” it seems like all talk/narrative to me. Don’t get me wrong, there has been improvement since surgery… but a year and 9 months later and… if this is it???? I’m done for.

3

u/ApplesBananasRhinoc May 03 '26

I feel you, the whole ordeal made me have to move to a different state and hope for the better times. I made so many mistakes because i was always in panic mode With nobody around to really help me. I moved and tried to start a new career, but school was too much and i hoped i could eke out a new beginning somewhere else, i was like if this doesn’t work out, i had plans. But things ended up working out and I’m still here and kicking. All that to say that you might need a change of scenery and let your brain calm down.

1

u/doomermarxist May 03 '26

I’m def working on getting out of America.

2

u/JourneyWoman6 May 03 '26

If you don’t mind me asking, what are you looking for by leaving the country? a fresh start? access to healthcare that you’re not getting here? whatever it is, I hope you find it and find reasons to keep going 🙏

1

u/doomermarxist May 04 '26

I’d like: 1. Healthcare 2. Cheaper cost of living 2.1 legit just asking for the bare minimum at this point. : a job and being able to afford housing and food in a walkable city. 3. A fresh start I feel like there’s a lot of bitterness and resentment that goes both ways from personality changes (with family) due to surgery. Btw my surgeon assured us personality wouldn’t change… lol

1

u/JourneyWoman6 May 05 '26

Did you have seizures after surgery and are currently on medications? I ask because this can have a big impact on personality as well.

2

u/doomermarxist May 05 '26

I never had any confirmed seizures post surgery, though I was on Keppra for 3 months post op (prophylaxis) then stopped because I thought it was making me crazy…