Pray for me craniotomy at Barrow 2021/08/12

I’m so sick and tired of living with an AVM
I decided to remove it after 2 years of doctors treating me like my AVM is “simple”
Long story short after three embolizations I thought I was healed
Lol think again
Facfs about AVMs
AVM causes brain irritation
Seizures are caused by brain irritation
Embolization and Gamma Knife is only for very small AVMs do NOT believe this advice to just “monitor it” if you don’t think the team of doctors are world class AVMs are pretty rare
Finding a good team of doctors is VERY difficult
You need a TEAM if you want success
Grand mal seizure affects all brain.
AVMs that change blood flow in the brain it seems that left temporal lobe is associated with seizures. And that is affected by blood flow of the malformation
Southern California they like embolization
Arizona (Barrow) they like surgery
It seems embolization is only for very small AVMs
According to ARUBA study surgery is a solution
According to ARUGA study your chance of hemorrhage or seizure INCREASES to 14% from 2%.
You tell that to doctors they don’t want to “talk about it”
It seems like the only solution is remove AVM according to ARUBA study
What happened to me
I had a massive seizure and they put me a breathing tube and they told me I will become a Keppra for 3 months
In my EGG they said left temporal lobe was also causing seizures
I got so sick and tired of begging doctors in Southern California I just asked Barrow if they can take the case.

So Dr Lawton will remove the AVM
He learned from Dr Spetzler himself

I have prayed to God that this is the beginning of the end!!! :palms_up_together:

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Xavier

You have my very best wishes for this week. I hope it goes well.

As you know, Dr Lawton is one of the top neurosurgeons in practice in the world, so you are in as good a pair of hands as it is possible to be.

Definitely will be thinking about you all week.

Very best wishes,

Richard

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Wishing you the best! If I was to have surgery, Dr. Lawton would be one of my choices for sure! I will be thinking of you, particularly on Thursday,. Take Care, John.

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My mom also had a left temporal lobe AVM and yes seizures were apart of that. I also agree you need a TEAM. If it wasn’t for my moms amazing team, including the team of our family, she wouldn’t be here. Praying for your surgery and thinking of you :pray::pray: stay strong you got this

Thanks
My AVM is on right occipital lobe but seizure activity was originating from both right occipital lobe and left temporal lobe.

It seems that when there are AVMs since it changes the blood flow in your brain then it ends up affecting the left temporal lobe

Also AVM causes brain surface irritation.

So this AVM has to go!

You are in good hands, that I can tell you from experience

My ICU stay at Barrow was life changing - to say the least. I was very fortunate & they achieved 100% occlusion on the 1st embolization attempt

They are top tier for surgery also - Dr Lawton was not the one doing my embolization, it was handled by his 2nd in command, Dr Albuquerque

Since Dr Lawton is the one doing your work, apparently it requires the best.

You are in my prayers & personally hope nothing but the best for you!

I had my Avm removed at Barrows in Arizona by Dr Lawton on 6/8/21 I was released from the hospital within 12 hours of my surgery. Had to be picked up by ambulance from my home the next day due to severe seizures transported to the hospital closest to my house. Then back to Barrows by another ambulance from that hospital. I stayed at St. Joseph’s overnight then was released again. I don’t do well on kepra so they have me on zonisamide. The seizures did not stop i called barrows nurses line every day for almost 2 weeks telling them the antiseizure med zonisamide was not working. Was told Dr Lawton would call me within 24 hours. I never received a call from from Lawton. My fallow up appointment wasn’t for 6 weeks after the surgery. His receptionist Andrea is not very pleasant. I finally got an appointment with Barrows neurology called Muhammad Ali nerve center on July 14th. They kept me on zonisamide even though I had seizures every day from June 2 to July 14th on zonisamide but added another antiseizure med called Depakote. I hope you have better luck and a better experience than I had. Good luck

Not to make you lose hope, my daughter also has a right temporal avm. It was treated by Spetzler himself when she was a baby. At age 6 it came back. She’s now 13 and we’re now exploring treatment options again (possibly even surgery with Lawton).
Just be aware, that just because you have surgery, doesn’t mean it will be gone for good. Hopefully yes. Hopefully everything will go well and smoothly for you.

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Hang in there @rafarataneneces ! I understand at least some of your pain. After multiple AVM surgeries, ruptures, a craniotomy, a shuntectomy, 3 bleeds, and more, I opted to go to a different medical group than previously. I went to Duke Neurosurgery and the whole team has been fantastic! What’s more they determined through there more precise expertise and equipment that the portion in my brain believed to be an AVM was actually scar tissue from a previous bleed. Drs. Hauck, Boisevert, and others at Duke did a phenomenal job! I hope you have a similar experience with your docs and facility! Blessings as you continue!

So sorry to hear

I do like how you added “better luck” < unfortunately, this seems to be variable in all of our cases. . .

I wish all of “us” “luck” - this stuff is the real deal, outcome is not guaranteed AT ALL

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Good luck to you! I say this as much for you as myself and all of us–try to envision yourself calm and coming out of your surgery “cured.” Believe you will get better; tell yourself you’re going to beat this. Might sound like “touchy-feely” stuff, but there is power in envisioning your outcome as positive. As others have said, you are in one of the best places for your procedure. I am considering Dr. Lawton as well and will be interested to hear how your experience goes. Prayers to you!

Good luck! I had a 6 cm left temporal lobe AVM taken out this February. One I was lucid and understood it was successful, I cried out of relief. I had multiple seizures and painful headaches. I had my case revised by Barrow, but was lucky to have a neurosurgeon that had experience with this before in Hawaii.

Just remember after the surgery to be patient with yourself. It takes a while to heal and that’s alright. For me, I had to be patient since I lost a majority of my hair and was forgetting words, but it gets better everyday after the surgery.

Again, good luck! We are all rooting for you.

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They found out in angiogram that Hoag hospital MRI machine before embolization found one AVM however Barrow found one AVM I supplemented AVM IV.
So it seems like from the beginning there was a real problem with Hoag diagnostic.

But because I have so much glue maybe that actually helped me both have a stroke. I guess we will not know until they take it out

Glad to hear things are getting better everyday. Are you back to 100%? When did you have the surgery? What did the doctor say the risks and expectations of surgery? Did you have embolization prior to surgery and if so any complications?

I have a left temporal lobe avm as well. A bit over 3cm and was given several risks. Doctor said 95% chance that things would be fine which I found to be a bit high for 2-3 embolizations and surgery. Complications include stroke from embo, stroke from surgery and issues with speech and maybe motor skills. Dr mentioned that if there were speech issues they would likely resolve with time to a degree. Unless I had a stroke which changes things.

I thought the success rate of 95% was a bit optimistic. Id like to hear about your experience and anyone else who has had left temporal lobe embo/surgery.

Thanks

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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