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AVM Survivors Network

My Brother


#1

On Monday, October 15th, my brother suffered a hemorrhagic stroke. Once he was transferred to a NS doctor it was discovered that he had AVM. The burst happened in his temple. He had so much blood in his brain that it was putting pressure on one side of his brain. They removed his skull cap and did surgery to relieve the pressure and to repair/remove the AVM. He had 2 more additional surgeries on his brain soon after because there were 2 other areas in his brain that had AVM or the tangled mess. He is so young. He is 44 and I am 2-years older than him. Over the next few days my brother was moving his limbs, arms, scrunching up his face when the nurses pinched him and even slapped the hand away of one nurse. Hes no longer sedated but on high blood pressure meds, pain meds and seizure meds. He’s even attempted to open his right eye ever so slightly. They did another C-scan on him today and discovered that he has had several mini-strokes.
This whole thing has been sudden, and so un-expected for not just myself by my whole family.
I am very sad, and just looking for inspiring stories, information on the brain, why, and how comes, and all of that in between.

I am sorry that I didn’t introduce myself properly but my name is Tammy. I am 46 years old with 2 sons.


#2

Hello @Tams099
Welcome to the group
I am so sorry about your brother but glad you found this site
It is very scary to be both the patient and to be the loved one.
My name is Angela I am in the Bay Area and have my AVM / brain work at Stanford.
That is good news that your brother is slapping the nurses hand away.
Before my AVM I had a stroke a rare one due to blood clots , that later caused my AVM.
I told my drs later that fentanyl does not work for me personally for head pain. Later I had another stroke during my AVM embolism and they gave me dilaudid which worked much better.
I was very nausea as well which my husband was some how able to figure out and I was able to nod.

It is different parts of the brain for speech and writing
So once he can open his eyes get him something to write with or an iPad and install a text to speech app-

One thing that really helped me after I got a lot of rest was coconut oil. My husband put 1 tsp in my coffee or tea a day then increased after a few weeks to 2 tsp
I was 43 when this all happened to me.

Your brother is in there. Keep talking to him.

I wanted fruit ice bars.it was like my brain was thirsty.

Talking was exhausting.

I could barely say one or two words and made a full recovery

Hugs Angela


#3

I am sorry to hear that.


#4

Well, right now it’s one day at a time for my brother. He has not woken up yet from anything. He’s in a coma, I guess. But breathing on his own. He’s alive. Doctors are saying that he is having mini-strokes which is not a good thing. At this point I am not even sure it is a good thing. Doctors were saying that they were giving him 3 weeks to wake up then re-hab and if he didn’t do well in rehab then home for hospice care. What does any of that even mean?


#5

Thank you Angela for the encouraging words!! I continue to pray for my brother and hope that he wakes up!


#6

@Tams099 I am sorry to hear he is having mini strokes.
Hopefully he wakes up soon.
Not sure if you want to contact Dr Michael Lawton at Barrow in Arizona for a second Opinion- I believe they do a remote review for 150.00
He is considered the best in the USA.
Keep talking to him and tell him to wake up.
It’s like walking in a thick soup when you are in coma. Almost like the minestrone soup my Italian grandma used to make where a fork was better than a spoon.

Prayers
Angela


#7

Tams

Thinking of you and your brother.

It sounds like he’s having a tough time and you’re having a tough time with him. The only thing at this time I think is to hope for those bleeds to stop. Your post is from last week: are the doctors saying he’s stopped having the mini strokes? I hope so.

If he gets through the strokes, it is likely that he’ll have quite a long recovery and that is usually in a rehabilitation centre rather than an acute hospital.

Thinking of you and hoping for the best.

Lots of love,

Richard


#8

Sadly, I lost my brother. He passed away October 24th. His brain never really stopped bleeding and as a result it shifted his brain completely to the right. I believe that we lost him the evening of the stroke.

RIP baby brother.


#9

I’m really sorry to hear that. He did sound really poorly.

Lots of love to you and your family.

Richard


#10

@Tams099 I am so sorry to hear about your brother and that he was still having bleeds.
You have my deepest sympathy
hugs
Angela


#11

@Tams099 I am deeply sorry and saddened by the news on your brother at such a young age… May God watch over you and your family at this time of need… God bless!


#12

I am so sorry to hear, my most sincere sympathy to you and your family. John