My son (14) had an AVM Stroke during swim practice

My wife and I were out running errands when our oldest son called letting us know that our son “fainted” on the pool deck during practice. The coach notified us that they were calling 911 as per their protocol. I figured I was going to pick up my son from the e.r. , get him a big dinner and spend the rest of the night relaxing and recuperating. When an entire team of medical staff met me right when I walked in; I knew things were never going to be the same again. A CT scan found the brain bleed and he was then quickly airlifted to Lurie Children’s Hospital in Chicago. He was rushed to surgery and they saved his life. There they were able to remove the occipital flap of his skull to allow the swelling to take its course. One major worry of the neurology team is, and continues to be, the damage to his brain stem. An MRI recently showed no “catastrophic damage” to the brain stem; however there was a very small region that did show slight damage. My son is now going on 4 days of being in a coma and they attempted to insert a feeding tube. While doing that, they lost his pulse and had to revive him. Since there was already an entire team working on him, they were super quick to bring him back. Needless to say, we have been besides ourselves with worry. Yesterday, however, they performed an angiogram to take a closer look in his brain. They found another AVM and were able to embolize(?) / cauterize it; further avoiding any more ruptures or aneurysms. (Sorry if I’m not using the best terminology). This procedure went well and it’s been the first bit of encouraging news so far, because all it seems like we get is bad news. He hasn’t opened his eyes, but he has started responding more to some of the things neurology does to trigger a reaction from him. He’s given very, very little, but we will take what we can. I guess, now, it is a waiting game. He is still intubated, but they have told us that he has been breathing a lot on his own…I’m not sure how. They hope to ween him off the respirator and sedatives as time goes by. We hardly are able to eat or sleep, but I’m sure you all have had the same experience. I’m glad I was able to find this network and have read a few things so far. I’ve been reluctant to look it up as it makes me more sad to think of what happened to him. Thanks for reading. I will give updates as much as I can.

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@RobO

Welcome to AVM survivors!

You’re going through it and those of us who are patients (and parents) would far rather be the patient than a parent. It’s a very difficult situation to find yourself in and very worrying.

I want to encourage you in at least a couple of ways:

  1. About half of our brain AVM members found out about their AVM in the same way as your son: when it broke.

  2. Recovery time from this sort of thing is very difficult to predict, so don’t be measuring this stuff in hours or days or get concerned that it is taking too long. Some amazing recoveries happen over a very, very long time.

Why are these important things to think about just now? Well, I mention that about half of our brain AVM members discovered their AVM at rupture because actually that means they made it through. It’s a difficult and undoubtedly dangerous thing to have happened but honestly, lots of people get through it and get through it well.

And the other point is that, as @ParentsAndCarers it is very tempting to focus wholly on your son. The right thing for you to do is to just make sure that you and your wife or partner and kids are all looking after yourselves first. Hopefully this won’t be a long game but it can turn into a very long game and that’s going to need you to keep well yourselves: properly fed, properly watered, properly rested and keeping job / house / family going. But the first focus is on you and food, drink and rest. Please make sure that as you go through this you don’t stint upon yourselves. Like when you’re on an aircraft and the air supply fails, it’s important that you have a mask on before you attend to others. It’s the same here.

For the record, I had an embolisation back in 2017 and it is the most amazing way to have neurovascular surgery in my book. I’m completely happy to have been treated like that. If you ever want to know what it is, I’m happy to explain.

Welcome! It’s great that you found us. Please continue to talk to us about how you’re all doing because that’s what we’re here for.

Very best wishes,

Richard

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Hi RobO, I havent posted here in such a long time but your note connected with me, and I feel compelled to respond. My now 22yr old son had an AVM rupture almost 4yrs ago…3/13/2020…the day the pandemic shut everything down! There are many parents who have been in your shoes on this forum. As Dick notes…many people recover and get through this although can be a long road. Right now the key is to take each day one at a time and make sure your son and your family are getting care. You are not alone…we are here to help. I would be happy to talk to you anytime.

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Dear @RobO

Just wanted to reach out and say we will be praying for your son’s recovery. I am an AVM survivor, and as @DickD so eloquently wrote, we much rather be the patient than the care taker.
Medicine has come great lengths and it seems by your post that you’re are in great care in Chicago. Your son is young and strong, with proper care, him and your family will get through this. This community is a great source of inspiration, and information.

All the best

Francisco

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Continuing the discussion from [My son (14) had an AVM Stroke during swim practice](https://forum.avmsurvivors.org/t/my-son-

Hi RobO,

I’m so sorry to hear about your son. I totally understand how you are feeling right now, Last year, my daughter she had a stroke in school when she just turned 15. After a MRI and angiogram, the doctor found a ruptured AVM on her right frontal. She stayed at the hospital for two and half week, She had problems speaking and her left side was weak, then we transferred to rehab hospital. Three months later, she had a surgery removed the AVM, it was a big surgery and took her almost half year recover. Currently she is doing much better and already back to school. It was a long and painful process. It takes a lot of time to accept the fact that we have the AVM problem.
I’m here to share my daughter’s experience, hope it helps. It has been a long journey, but we are taking steps to overcome the AVM problem. I’m sure your son can do the same. We will pray for your son.

You’re welcome to contact me should you have any questions.

Thanks
Linda

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Thank you so much for the stories and encouraging words. Tomorrow it will be a week since the AVM. There hasn’t been a lot of progress, but he’s not regressing either. The big question is for us to find out how the brain stem injury impacts him. The neurological team said there was a very very small region of the brain stem that was affected. We are hoping and praying he will wake up. I don’t care if he is 100% perfect; I would just like to look into his eyes again.

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Rob,

We’re with you. A few years ago, we had a couple of months where about a dozen people were saying they were off to surgery on one day, the next person a few days later and we filled a month or two. I counted people off to surgery and I counted them back. Everyone came back. However, I found it pretty stressful doing that (I haven’t done it since!!) Be assured that we are with you along the way.

I can’t say I’m the praying kind of person but there are many others here who are, so if concerted prayer would help you at all, do say so. It is best to ask for prayers in the “prayer & healing requests” category (because we try to keep this place very non-denominational and open to all, no less those of no religion as anyone of any).

The extent of that brainstem injury sounds like the point about which much will turn.

Sending you lots of love and patience!

Richard

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Thanks, Richard. That means a lot.

It’s been decided that my son is going to be taken off life support on Sunday. His condition hasn’t improved and the neurology team believes the longer time he is on life support, the most damage is being done for potential recovery. It seems that the location of his AVM (base of brain, near the cerebellum) was the worst luck he could have had with this incident. Is there any chance of a rally?

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Dear @RobO

There is always a chance and hope…. We will be praying and sending you the best of energy…

Francisco

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Who knows. Your news sounds very poor.

Thinking about you all and sending as much positive thought as I can your way :heart:

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I had a lot of hope from reading the posts here. I guess that’s the very meaning of “survivor bias.” I’m glad I was able to share and read everything on this message board.

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And I’m afraid my bias is definitely towards optimism. I don’t like to give anyone false hope but I’d find it very difficult to be telling the hard story, even if I thought the outcome would be likely to be the hardest. Nobody wants to hear that answer, though every time it is a risk. And we are all just patients – only our own experience to go by. Or that of a parent or child or brother or sister or friend.

If it helps at some point to find other parents or relatives who have gone through that hardest of times, they are also here.

All my love,

Richard

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Hi Rob

I don’t know what you’re going through because i was the patient (then aged 19)t, like your son, but I survived i think about 2 weeks on life support and then nearly a year in hospital treatment.
Each survivor is unique and the journeys different so lets all hope your son pulls through the emergency room stage before you look further ahead.
For info I wasn’t responding but people would sit and talk to me, play music, retell me stories and it may have helped. I’ve no memory of that period of time. People said it helped them fill the time sat next to my bed.

Best wishes
Tim

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Hi Rob, I’m praying your son will be ok. Stay positive. Sending lots of love :heart:

All,

I have to tell you that I had a chat with Rob yesterday and it is with the greatest sadness that I have to tell you that his son did not survive the plan to reduce his life-support.

I know you will all join me in sending our love and deepest condolences to Rob and all of his family.

Richard

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I am so sorry Rob. My most sincere condolences to you and your family. John

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I’m so sorry Rob, my heart breaks for you and your family. May his memory be a blessing

Sharon

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I am saddened to hear of your loss @RobO. My heart goes out to you and your family.

Karine

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Dear Rob,
I had a lump in my throat reading about your son and I am so terribly terribly sorry for you all.

Talloak

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