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AVM Survivors Network

Sharing the Wisdom Brain Injuries

#1

Hey all,

I went to a program tonight put on by the hospital that my wife works at, I have been a patient at and so forth about Traumatic Brain Injuries. A couple of interesting things I learned:

  • Those of us who are dealing with brain issues, they are not traumatic brain injuries, they are acquired brain injuries. What’s the difference? No violent action (car crash etc.) and a more challenging recovery.
  • It is possible to have either type of brain injury and they won’t show up on any scans. That makes it harder to understand so anxiety is a much bigger issue in increasing brain health.
  • A a general guideline, somewhere in the 4 to 6 month range, they try to move the focus from rehabilitation (bringing back what was lost) and to “abilitation” as a focus - meaning that you and your med team need to focus not on getting back what you lost but on trying to figure out how you can do it in a different way.
  • time frames make no sense. What works for someone else, might be no where close to what you are going to see. The majority of improvement will come in the first year but it’'s very possible to see symptoms show up later and/or to experience things going away long past the 1 year mark. He said he has seen it as far as 5 to 7 years.

So that means the fact that my eyes are getting worse right now is not a major cause for concern and it’s not necessarily a sign that the AVM is getting worse. It could very well be a shuffling of blood flow - even this far out - and probabl even farther.

The brain is very irregular in terms of its healing process and while the first 12-18 months hold the majority of the healing, it’s not everything by any means.

Logical progression in healing from a brain injury? Forget about it!

Thought I’d share the wisdom. I hope I took good notes…

Cheers!

Tom

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#2

Great info Tom. Thanks for sharing it.
I’m a year post bleed and craniotomy. It’s nice to know that all the weird pains etc, that come and go are not unusual. Hopefully I’ll see some more improvement going forward. Recovery is such a long and lonely journey, although there are no guarantees it’s nice to know that more improvement is still possible.
I love the “abilitation”. I’ve definitely been doing a bunch of that and although I’m not as quick and coordinated as I used to be I’m able to get stuff done, which feels great
Carol

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#3

Greta post Tom! Some great info that I think will resonate with all of us. Take Care, John.

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#4

Thanks for the heads up Tom. One caveat I would like to be injected to the discussion is a third category of brain injury. You have TBI or traumatic bi. That covers car accidents, sports injuries, things of that sort. Then you have acquired injury. That is “https://www.biausa.org/brain-injury/about-brain-injury/nbiic/what-is-the-difference-between-an-acquired-brain-injury-and-a-traumatic-brain-injury An acquired brain injury is an injury to the brain, which is not hereditary, congenital, degenerative, or induced by birth trauma. An acquired brain injury is an injury to the brain that has occurred after birth.”

What’s missing? Where is AVM? Which one does that fall under?

That’s why I propose, but it will probably never happen, the creation of a third category, hbi or hereditary brain injury or CBI or Chromosomal brain injury.

This third category would include artiovenous malformations and other malformed vessels in the brain. This is because the injury is not from external impact (like a TBI) nor is it always congenital ( Acquired Brain Injury
An acquired brain injury is an injury to the brain, which is not hereditary, congenital, degenerative, or induced by birth trauma. An acquired brain injury is an injury to the brain that has occurred after birth.

The creation of a third category would allow for appropriate designation and treatment, while also giving medical professionals a clearer understanding of what’s at stake!

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#5

Paul, I think I understand where you are going with this - and I think for a lot of AVM’s that does make sense. I think that I am not one that would follow that guideline. My AVM started in my neck and shoulder and it was 40 years after discovery before it impacted my brain. I think that some of the blood vessels that have been affected “led” into my brain earlier but it never gave me any symptoms (or if they did, I hid them well).

So, I’m curious, how would the third classification make a difference? The doc who led the class last night classified a brain injury from a stroke the same as a brain injury from an AVM. What would be different if it wasn’t?

At some times, I think I have learned more about the brain than I ever wanted to. At other times, I think I don’t know nearly enough about what’s going on in my head…

TJ

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#6

Hey All
And I say ‘All’ because I think you have all added some very good points to the conversation. I’ve had to walk away and have a real hard think about it all, before returning to post this.

I say this because in my own situation there has been some medical debate regarding cause/effect. Is it acquired? or Is it TBI? and depending on which medico I talk to, on which day of the week, with whatever report I have in front of me I can end up getting many different answers. So by no means is it an easy, straight diagnosis/answer.

I was involved in a MVA, that was traumatic. Years/decades later I was diagnosed with a brain tumour, that is considered as acquired. What caused which damage? Was the tumour a result of the MVA? Unlikely according to some, but possible according to others. Over the decades in between the MVA and tumour diagnosis everything was simply labelled as either TBI or just “a shit of a kid”, so which is it?? (99% was just put down to “a shit of a kid”).

I do have a bit of an issue with the idea that “No violent action (car crash etc.) and a more challenging recovery.” I say this, not simply from my own experiences in dealing with my own situation but, also in working with others and having to deal with and manage issues from both sides TBI an ABI. Psychologically viewing a TBI could possibly be easier for some to accept because there could be a known cause, where an ABI may not have an attributable reason but the results from both can be minimal to catastrophic, so I couldn’t agree that an ABI has a ‘more challenging recovery’ as a rule. In some cases maybe, but in other cases no way. Trying to compare brain injuries (TBI OR ABI) with a simple A+B=C equation is just not possible, there are just too many variables.

I can also see merit in Paul’s points of a third definition, but such a definition would not be known so much as an ‘injury’ but rather an ‘abnormality’ especially if it was considered Chromosomal or hereditary. In very general terms some conditions that are not considered Chromosomal nor hereditary are commonly labelled and known as encephalopathy. There are many forms of encephalopathy depending on the cause ie Hypoxic ischemic encephalopathy (lack of oxygen), hepatic encephalopathy (liver issue) metabolic encephalopathy (chemical imbalance) hypertensive encephalopathy (arterial pressure) Wernicke encephalopathy (alcohol) etc, etc, etc. This really does go to show that in many instances it can all be ‘by medical interpretation’ and many of us know how vastly that can vary. But there is some discussion that as these titles are often not given until after birth that they are then considered acquired. This is one of those medical arguments that will be never ending, a bit like ‘which came first the chicken or the egg’.

So, in all honesty I do not believe there is a simple answer of TBI or ABI but more a vast array of conditions that are listed under these two headings.

Merl from the Moderator Support Team

#7

In one of my wordiest comments ever…

“Yup.”

#8

If I may Merl, the only problem that occurs by saying there’s not a simple answer is that in mind there is. Create a third classification of injury. If you didn’t have impact on the cranium, its not TBI. If you didn’t have a growth, tumor or something inside grow throughout the brain, its not an ABI. So then those of us who have/had an AVM, just by mere mentioning of a third category of injury could theoretically change the scope of treatment for hundreds if not more of patients. And I’m not trying to beat a dead horse but having suffered from misdiagnosis, injury from being misclassified, and unintentional medical malpractice because I was misdiagnosed, I’m kind of passionate in getting this corrected for the future generations. I got kids that I would feel ashamed if I didn’t do everything in my power as a father to fight for their survival and flourishing. Therefore, if I am willing to fight for my family, I’m also ready to fight for, not with, my “family” of avm survivors! And in all this, please understand passion does not equal anger. :slight_smile:

#9

Hey Paul,
By no means what-so-ever am I perceiving this discussion as anger. NOT AT ALL. in fact quite the opposite. I can wholeheartedly accept and acknowledge your passion, having been on the receiving end of misdiagnosis myself for many years I agree with many of your points. So please do not interpret my input to the conversation as being objectionable to your own, that is not my intent here. I believe it is only by having such discussions that advancement of comprehension and understanding can occur. Being closed to any such dialogue shows the pinnacle of ignorance/arrogance as far as I am concerned ie ‘I am right and everybody else is wrong’ this is an attitude that blocks advancement in any field. I am always open to other views, well, I try to be anyway.

I am coming at this from a couple of differing angles, both as a patient and as a worker who has needed to deal with the impairments/human impacts of such a diagnosis. As a worker I had to deal with the person as a whole. I could not pull the person apart and say “I’m only dealing with the TBI side of things or the ABI side of things” But it does seem (and I may be wrong) that some professionals in the field do attempt to do so, to what ends? I am unsure as this is less than helpful. I am a little unsure how a third category would improve things. Yes, I can see that having another classification may improve treatments for a specific condition but by having a separate classification solely for one condition it isolates that condition from the whole brain injury family and I do wonder how helpful that actually is, especially within the diagnosis and treatment fields. If there was to be such another classification what other conditions could come under that classification?

Also AVM’s are not solely a ‘brain issue’ but can and do occur elsewhere in the body, so rather than being a brain issue they become a vascular issue, which separates them even further when discussing brain AVM’s. The issue I see with this is that it spreads the science in the field even thinner by being pinpoint in our definitions.

Merl from the Moderator Support Team

#10

Hey Merl. Thanks for the reply. Briefly let me comment on the quandry as to why we need a third category. A TBI by definition is external impact. That is external force external to the brain and also external to the normative workings of the brain.

ABI is disease that affects the workings of a normal brain that causes a healthy brain to malfunction. Again, helpful but does that include those whose brain makeup is normally malformed? That’s why I think we need a third classification.

A person with an anyeursym does have a “normally functioning brain” that is malformed. That’s why it ruptures. Hence, we need a third classification that gives room for those whose normally functioning brain is from birth given to rupture. Does that make sense?

It is not external impact. It is not a disease external to the persons anotomy/biology. I know it sounds redundant, but it really is so important for treatment. I know because first I was misdiagnosed in a college ER town because they thought I was drunk. I wasn’t, I was heammorhaging (sp).

If they had a third classification to initial diagnosis, what might have been prevented? Ramble ramble. And I’m out for now. I welcome your feedback.

#11

Well, I like this part!

:heart: Richard

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#12

OK, so, further to the discussion. Is an AVM an injury or as the name suggests a congenital abnormality or ‘malformation’? Then comes the haemorrhage and this is what causes the BI, so the AVM maybe present but cause very little in the way of symptoms, until the rupture. The AVM is a condition but is neither a TBI nor an ABI. A traumatic event may trigger the AVM to rupture (a TBI) or the pressure build up may cause the AVM to haemorrhage (an ABI). The definition of ‘injury’ is harm or damage caused to a living thing. I believe that neither are a BI until such time as that rupture or harm occurs.
Well that’s my interpretation.

Merl from the Moderator Support Team

#13

Thank you so much for this. It has been six years since my surgery and I have been having issues again. This gives me a lot of hope. i am a guitarist and piano tuner. It is how I pay the bills. My left hand has been slow and it scares me. It comes and goes. Hopefully it is just some light seizures and anxiety. Comes and goes.

#14

Thanks for all the interesting information. My case was discoverd after a car crash. I was driving and suddenly I crashed. It happens 8 years ago. After waking up from the crash the doctors noticed that I have an AVM plus and aneurysm. But my case is unusual, is being discribed as asymptomatic. I don’t feel anything when the small incidents happened. Only third parties notice it. I have not any discomfort or pain at all. Keep taking my medication and carry on my life. I am a teacher. And never had any problems with anything and continue my teaching without any problems.