Pray for me craniotomy at Barrow 2021/08/12

Hi @MikeM

I am definitely doing much better. I would say 100% but around 90. I am still dealing with occasionally forgetting words and misspelling them. But it has definitely gotten better. One of the other things I am dealing with is just occasionally getting tired easily and just being hyper aware of the left side of my head. My surgery was in February of this year.

I actually had embolization the day before my surgery. The embolization took around 5 hours and the surgery was around 9 or 10 hours I believe. Since there were complications with both my embolization and surgery, I was kept under for 3 days because they were concerned about the possibility of a stroke or seizure. I was actually given the same likelihood of success as you. After my surgery I definitely had issues with speech, but nothing with motor skills.

I was definitely lucky though. My surgeon was wonderful, he came by everyday I was in the hospital to check on me and answer any questions I had. I am suppose to have my 6 month angiogram soon, however there has been a rise in COVID cases in Hawaii and the hospitals are starting to get overwhelmed so I’m not sure if they are going to have to postpone it or not. Definitely concerning.

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Definitely hoping OP is doing well! - shoot, today is Friday the 13th

Another week just flying by

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Anyone hear from Caroline? Status?

Hope she is ok.

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Think so. Her last message to you was just 4d ago.

Dear goodness lol. I replied without reading the date of her response. Sorry about that.

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I had my surgery Thursday 2021-08-12

Barrow Phoenix definitely has more experience.
They said previous doctor didn’t cover all of AVM with 3 embolizations.

They seem to have better machines here.

Detect everything over there the experience was supposedly great but I had a grand mal seizure

So I decided to just remove the AVM Spetzler three days in the hospital.

I will need Keppra forn6 months they said I pray to God I don’t have more seizures.

That was the first time in my life this happened.

They also told me so much Onyx is bad for your brain.

I was already suspecting that when I read the report

Post operative angiogram was good they said AVM is gone

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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!

-randombeggar

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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,

Richard

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,

Richard

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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.