Pray for me craniotomy at Barrow 2021/08/12

Hi, Sorry to hear about the grand mal seizure. Sounds like a terrible experience. Based on your thread, it sounds like a previous doctor had given you 3 embolizations is that correct? Where is your avm located and how big? Any deficits post surgery? Any issues with embo?

Glad you are doing ok.

Embo is recommended only for really small AVMs mine was 3.3 cm I think he didn’t covered it all. It’s pretty bad if he says it’s fixed and it is not. Maybe he didn’t see something or just Barrow has more experience but if a person enters your brain 3 times and he says he’s got 100% of everything then a year later Barrow says only 80% then definitively something was not done correctly. You don’t have to be genio is to figure why a healthy person has a grand mal seizure. They also told me too much Onyx is not good for your brain. And they also told me seizure is usually right before hemorrhage.

I am happy I decided to just do surgery and fix the problem.

Living with AVM has given me so many symptoms for almost 2 years.

I made a decision to just remove it

I just feel my index finger a little numb.

Lol and of course I feel somebody stapled my head but that will go away.

Last year with covid it was impossible to just chose when and where this year it is possible.

In summary last year I embolizations didn’t finish the job and I didn’t wanted him to keep entering my brain after he made this mistake.

Saying it’s 100% when it’s only 80%.

That’s absolutely not good.

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Good to hear from you, and your mostly positive experience of BNI

They into detail on why they believe that much Onyx “is not good for you”?

I ask this, since I was pumped with over 3cc’s worth of this stuff in one round

Sounds like you’re doing darn well tho, considering the situation

So glad to hear you are well!! And the best part, GONE!
You’re good except for your index finger? Walking/talking? Did I read correctly–home after 3 days in hospital?

Sounds like great news, hope your recovery goes smoothly!

Hey @rafarataneneces! I’m glad to hear from you that you’re recovering! Hopefully the worst is over with! I hear Barrows is a great facility to get these disorders fixed! I wish you all the best as you recover! Grace and peace as you continue, blessings as you go!


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In my case Onyx I was bad because my doctor put too much and he didn’t obliterated 100%
It actually grew considerably
I think after trying for three times it was evidence that I needed a new team. I don’t think if a person enters your brain 3 times and cannot embolize all of it he would have magically embolized properly the next time. It seems barrow has top of the line machines also. And also at Hoag there was one guy that knew how to do this thing. And obviously he didn’t get it. I think I was going to get a seizure sooner or later if you don’t have a good team of doctors you’re screwed. So that was my fate. Then I went to Barrow and forgot about work or everything else in life. I just wanted a good team.

This disease is more brutal than I thought and hospitals people are not ready. That’s half the battle finding a team of scientists/experts.

I ended up deciding I want the AVM gone and so that was my decision I would never be happy with the “now you need Keppra” like that was the worst explanation

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Ouch :confused:

I mention this a bit, I guess - I got lucky. . .but, from reading your writing sounds like you’re doing well

Still in ICU?

Anything else completely out of whack? No lie, I’m scared shitless that they’ll have to open my head one day. My one embolization has to feel nothing like a full on craniotomy. Let alone you had three of those.

Everything feels good I just was feeling almost like a little drunk around noon I guess it’s the 104F heat of Phoenix. But I refused to live with AVM so I think this was the only solution. Having a brain that is irritated or taking blood to wrong parts of the brain seems extremelly dangerous to me. And seizure, that was the end for me, so I chose to have surgery instead.

Overall I would say do not be afraid.

This solves the problem.

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This is sooooo much easier to say afterwards, isn’t it? Your messages a week ago didn’t indicate you being comfortable with this at all, not that any of us are comfortable with it. I felt the same about my embolisation: once through, comfortable with it.

Really glad to know you’re through the op ok. Take it very easy for some time.

Very best wishes for a full recovery,


You are wrong

My faith in God was the same a week ago

No fear

I was upset I had a seizure because doctor said it was 100% embolized

I was stressed about all the legal paperwork for leave of absence

Answering the questions 800 times for insurance

My head hurts it feels it was opened and put back together

I listen to the Bible audio book :closed_book:

I am happy :blush:

Yes absolutely

Does it hurt?

Yes absolutely

But AVM is gone

God protected me the day of seizure

Bible says God doesn’t neee to strike twice he could have taken me out

So faith in God was always there

I told doctor my fear of surgery is 20/100

But all the other stuff makes you anxious it’s a lot of paperwork

But overall AVM is a ticking time bomb embolized or not

Trust me unless you want to do angio every 6 months forever

Well, I knew you were anxious about something. It’s good to know that you’re doing well.

Keep on getting better (and don’t be put off if you have a couple of setbacks: recovery is not always in a straight line).

Very best wishes,


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Yes right now my main goals are

  1. rest as much as possible the next 6 months
  2. follow ups in Phoenix at Barrows
  3. Go to John Hopkins 6 months from now see what they think about seizures and AVMs
    It seems at Barrow they are confident I can be free of seizures since that was the first seizure of my life.
    I really don’t want to declare victory until I’m really good.
    It is time to let overconfidence don’t play a role in anything.

I am happy surgery removed the whole thing, living with an AVM is not for me, I had symptoms for two years, I could have died suddently, especially after feeling symptoms the first time in October 2019, so many things God protected me from.

But the Lord upstairs helped me even when doctors made mistake, he controls every hair in my head.

So this is yet another reason for worshiping him always and forever.

You don’t get always the outcome you want, but knowing that he helps me it’s incredible.

Tomorrow they remove 50 staples from my head hopefully this nightmare is over

I am really afraid of seizures but at Barrow they said it shouldn’t happen as it seemed related to a micro hemorrhage. I think it didn’t bleed but seizure was a warning Dr told me they usually happen right before hemorrhage

This does seem to be the case

I didn’t even know what happened when my 1st seizure hit - I remember just hitting the floor & not knowing what was going on. . . A week later I hemorrhaged & after that it was constant seizures until post embolization.

When was your bleed? And after embolization you didn’t have any seizures at all? How many seizures you had total? Did you have grand mal?

Post embolization, not even one

Leading up to, I lost count - the first one was a week or so prior, I lost consciousness for a few minutes & woke up on the floor - I had no clue what happened, and just brushed it off because it just didn’t make sense

Then when the hemorrhage happened, a few days after - they just started in waves. Again, nothing like I felt before.

By the time I got to Barrow, I’ve had to have suffered a handful of these. They put me on anti seizure meds(Kepra) until they could get me into OR.

I stayed on Kepra for the day of my procedure. As soon as I could reply back to the 20 questions of where you are & how I got here - they pulled me off.

My 2nd lead neuro went on a whim a tad & pulled the med immediately. He was right - it was no longer necessary & the seizures were brought on by the pressure the AVM was creating in my head

  • I still have the huge rx bottle of Kepra that I never had to use :pray:


They removed my staples.

I pray to God this is the end of this 2 year nightmare.

I worship God that he has given me peace In The Middle of the Storm :cloud_with_lightning_and_rain:

They said seizure was due to AVM they think that triggered the seizure

Previous doctor didn’t realized abnormal blood flow. That explains a LOT of things!!!

They said they see AVM as not there anymore!

Praise the Lord!!!


Wish you the best - you’re definitely going through it

I have my faith, and my faith in Barrow


Hi @rafarataneneces

I hope you find the answers you need and can live life with this AVM treated one way or another… I have trust that you will have this AVM sorted at some point and understand the frustration and stress associated with this… always remember you have the option to get a second opinion if you think it will help… God bless!

Well the AVM was removed so for now the plan is to go to UCLA and do MRI and see if everything is 100% gone

I chose the most aggressive treatment craniotomy

Embolization didn’t work for me the doctor put too much Onyx and blood flow actually increased in some of the veins

So surgery went wrong and that caused the seizure

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