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AVM Survivors Network

Still unconscious from a AVM rupture...May not wake up or respond


#1

My 8 year old nephew had an AVM rupture on Saturday. He is still in PICU. The MRI he had on day 4 or 5 is saying there is damage/trauma to his brain stem and or cerebellum and it’s irriversible. It is unable to send signals to his body. He’s on a ventilator that’s breathing for him. They’ve been back and forth many times on different signs they were looking for like him coughing and moving his head. He’s done those and they said “good” or “excellent” only to come back and say it means nothing. He still has some swelling so I’m wondering how long should we wait for swelling to go down and ask them for another MRI? Has anyone recovered in anyway from a similar rupture, and if so how long did it take? They say he can hear us in which his heart rate inscreases when certain people touch or talk to him. All of his other organs are fine as well. What other hospitals can we get a second opinion that specializes in this type? We want to try to increase hai quality of life but we are just so lost and confused by the doctor inconsistencies. Thank you


#2

So sorry to hear this, and I know how hard it is to stay strong. These things are really different for everyone, and I hope you will get some community members passing along their experiences. Personally mine was left temporal, bled, didn’t need surgery, had gamma knife just about 2 years ago. Thats a short recap, but far different than your nephew is experiencing. I can pass along a few consistencies I’ve noticed. Being young is hugely beneficial, the ability to recover seems to be amplified significantly. Time is a huge factor, and all of these take time, many significant time.

There has been a number of questions here in respect to second opinions. Being in the US there is a number of recognized experts. Mayo out of Rochester, MN, UCLA and here is one link in respect to second opinion.

There will no doubt be more added by others and I have read about some specifically for kids. Your nephew is still really early in recovery. Stay strong, thoughts and prayers to your nephew and family, John.


#3

Hi

I’m sorry this has happened. I agree with John on all points.

Recovery from a stroke is a long process. I am fortunate not to have had a bleed but from a documentary that I have seen and from listening to people’s stories on here, recovery can take a very long time and I would say it can start quite slowly. While there is swelling going on, I think many positive things will be suppressed. Once the swelling has calmed down, you might start to see more signs of improvement.

Wishing you all the best,

Richard


#4

I am very sorry to hear this about your nephew and can only send many prayers your way that he gets better soon and recovers fully from this rupture… Its difficult for anyone here to really give medical advice on the wait time for MRI etc and as hard as it is you need to keep pursuing the medical staff and experts that are treating him at the moment… I hope this helps a little and please keep us posted on his progress… God bless!


#5

I’m so sorry to hear about your nephew :face_with_head_bandage: My 2nd rupture was on my right parietal lobe but I was induced into a coma to reduce the swelling since I was at the verge of being pronounced brain dead. It does take time and my family went through the same emotions of the little comments doctors make. We too were told I might not wake up, there was far too much damage. If it’s any consolation I make my drs cry every time they see me since I am now close to the point of walking unassisted. It takes time dear all my progress has taken about a year and to wake up it took me 3 weeks. I too would cough and heart rate would rise when I recognized a voice. He can hear you all, he just doesn’t know what is going on. So if they allow you to hold his hand and explain who is in the room stuff like that. It’s hard to be patient but like everyone said he’s young and if he’s stubborn like me he will recover faster. He’s going to need everyone’s strength once he wakes up. :pray:t3: Praying for him


#6

Sorry this happened
I had my Avm ruptured in brain stem
I was in coma for about 6 days or so. the first feeling was the feeling of pain, I was moved from ICU after approx. a month after rupture to an intensive rehab. hope it helps. Ask me if you like )


#7

While I’ve never had a bleed and this last treatment that has turned my life pretty much upside down was to prevent one, I’ve gotten to know some people at Mayo in Rochester Mn. Quite well. Maybe even too well, you might say.

If you end up needed to talk to anyone there, I would highly recommend Dr. Giuseppe Lanzino - very good to work with and doctors I’ve talked with since the last time he treated me have spoken very highly of him. I also know other people at Mayo who can help “smooth out the bumps” if you need it.

Stay strong - and vent and scream and cry and whimper and whatever here - we can take it a lot better than your family can. That way you can help your family and we can help your family too…

Tom


#8

Wow! Thank you so much everyone. We are seeking second and third opinions from Mayo and Boston Children’s. Today I wiped some sleep from his eye (closed eye) and he moved his head. Doctors are saying brain dead and he can’t hear us, another saying not brain dead and that he can. Any reaction to our touch where he either moves his leg, squeezes a hand or moves his head has nothing to do with anything. We shouldn’t be hopeful. They’ve given us so many back and forth updates that it is ridiculous but it’s only been 8 days and from what I’m reading and experience it takes time for his brain to reduce swelling etc for any more significant changes etc. Again, thank you all so much and please keep him and our family lifted. Should there be any other pieces of information that come about from the additional opinions and or improvements that he shows, I will ask for experienced feedback. I am greatful for this network that I’ve found and appreciate everyone being so open. :slight_smile:


#9

Hi there. So sorry to hear about your nephew. I know how terrifying this is and I wish someone could just tell you for sure that he’ll be ok. With the brain as you’ve learned, even the doctors don’t always know what the outcome will be. My daughter was 9 at the time she suffered a horrible AVM rupture in the right side of her cerebellum in January 2017. The bleed also compressed her brain stem. Apart from a pain response when the surgeon pinched her or pressed down hard on her sternum, she was basically non responsive for over a week. She started opening her eyes after about 9 days but only for a few minutes at first and staring straight ahead. Slowly over time she would have her eyes open for longer periods. She ended up getting a tracheostomy and Gtube and stayed in the PiCU for a month. Then acute care for two more months before going to rehab for 5 months. She emerged very slowly from her coma. It’s not like TV. People don’t just wake up and resume there previous functions like before. The trach was removed in April and Gtube in August. She finally started talking in June so 5 months after the bleed. Please don’t give up hope. Children really are resilient. My daughter’s recovery has been agonising in so many ways but she’s truly a miracle. Today she is eating and drinking as before, she is talking very well but a bit slower than before and she is walking independently. Her gait isn’t perfect and her balance isn’t always great but all things considered, she’s doing really well AND she continues to make progress. Hope this helps. Out of curiosity, where are you located?


#10

Hi AllieG,

That’s so amazing to hear about your daughter. That surely gives me hope!!! I hope she continues to progress. I am in Cleveland, Oh. This Saturday will be 2 weeks since the rupture and my nephew in PICU. We aren’t giving up and while patience is the hardest part it still eats away at you. We are strong and it’s stories like you and your daughters that are so similar to my nephews that shows me that we must stay hopeful! Thank you so much for sharing :slight_smile:


#11

My husband was a very vibrant and healthy 53-year-old and an AVM we didn’t know existed ruptured. He had extreme bleeding. The neurosurgeon said the only thing he could do was attempt to save his life. When he came out he put two fists together and told us he had removed that much blood but was unable to stop the bleeding due to swelling. He also said he in a coma he had not induced and could not reverse and there was no guarantee hed ever wake up. He gave a 10% chance but Said if he ever awoke THEN there was only a 10% chance to ever have any functionality. He spent 40 days in the ICU. It’s been 5 years and because it’s been little by little our story would be too long to write here. But I can relate- I was told responses were nothing and given no hope. My husband has come miraculously far. Movement has returned one finger and toe at a time. He’s awake and can talk. We have never stopped progressing- pray hard, work hard for him, and never give up no matter what. He’s young and has that benefit on his side. Our posts are at https://pacificbaptist.com/pastor/


#12

We’re glad you found us.

Wishing you, your nephew and your whole family all the best

Seenie from ModSupport


#13

Remember also that age is on his side – under the age of 10 the brain does amazing things, including having up to HALF of it COMPLETELY REMOVED to deal with life-threatening, non-stop seizures. Here are some general articles on the amazing things brains have done:

Obviously these aren’t so much about bleeds, but they are about what brains can do, especially in the young.

Hang in there.

azurelle


#14

Wow! This is amazing. I had no idea about the brain etc. and you are right about age. They didn’t think he’d ever be able to breathe on his own and after 2.5 weeks since the bleed he has not only started to breathe over the ventilator, he is off the ventilator for an hour each day now. They are still saying that he may never regain consciousness. His eyes respond to light but that’s really the only response that we get from him. They can see damage to the stem but there’s still an area that is connected. They just can’t say what signals it may be sending to cause any of his movements to rule out if they are involuntary or not or if over time the brain can heal enough there that would allow him a better quality of life. They don’t even know if he’ll be able to swallow to prevent his saliva from collecting in his lungs to prevent him from getting pneoumonia. His top half of his brain is not damaged and they do feel he can think, comprehend and understand everything. He just can’t speak or react how he would want, essentially remaining trapped. We are faced with if’s and unknowns at this time, however, the avm is still there. They felt due to his condition and swelling that operating on the actual avm would be too dangerous. The blood flow has minimized and they are considering removing his drain/tube and possibly putting in a permanent one. It’s definitely a lot to take in and consider but our family is hopeful!!!

I appreciate all of the replies with hope, prayers , personal experience and research! I’m so thankful!


#15

I want to thank everyone for their words of support and prayers. Sin’Cere, my nephew had his shunt removed in hopes that the fluid on his brain wouldn’t increase and unfortunately it did and it did so rapidly. This caused swelling of the brain and his body. He was physically suffering and Mom and Dad made the choice to end the suffering. He passed late last night surrounded by family and friends. We are now preparing to celebrate his life and legacy as a loving, energetic 8 year old. Once again, thank you all and and I ask that you keep us all lifted in prayer for peace and understanding during this time. :heart:


#16

Hey,

Thank you for sharing. There are no words that fit a time like this well so I’ll stumble a few out that might be the right ones (or might be the wrong ones, but I hope not).

I promise to think about you guys all week.

I hope, as you say, you can celebrate his life. It doesn’t matter how young you are, I think everyone has an impact on others. He will have made a massive difference to those around him – his family and friends – in all sorts of ways, so celebrate that enrichment he brought but it is also absolutely right to mourn that he was taken away.

Lots of love,

Richard


#17

I was so sorry to read about what has happened but so glad his parents kept his best interest in mind (which is very hard to do).

My thoughts are with you – sending you and your family a wonderful quote from Dr. Suess:

Don’t cry because it’s over, smile because it happened.

azurelle


#18

I am honestly gutted to hear that things went this way for your nephew. I’m so sorry for your loss. Glad that his 8 wonderful energetic years will be celebrated, but this outcome just isn’t fair. Parents like me of kids who have survived and recovered so well do not take this for granted for a single day.


#19

I am so sorry to hear. My thoughts and prayers will be with you and family. Take Care, John.