Brain Aneurysm Support Community

I'm new to the forum and I Just Need Help Understanding

**strong text**Hi all. I don’t know where to begin. I found this forum back in June when my brother had a Brain Aneurysm burst. It happened on June 16th. He’s still alive, thank God, but he’s not exactly “with us.” I read all these success
stories of people telling their stories, and they’re so wonderful…except my brother can’t tell his story. His brain is too damaged. He still has the feeding tube in his stomach, my sister cares for him I Colorado although he had it in Nebraska. It’s been a long road since then. So he had the coil surgery, then he got septic shock, so they literally cut my dear strong protector, my brother, Greg, from the neck down, they basically cut him in half to remove the infection. I get confused at this part, because then they put a shunt in and removed the coil from his brain. (If Someone can help me understand that, because I don’t get it, that would be so nice to be enlightened) I am totally baffled by that…Jump to February and March… He got pneumonia in January and now has coughing fits that render him inable to breathe. It scares him and of course Kim (my sister) so much when he has these fits. Now he had a stroke a little less than a few weeks ago, so he was back in the hospital. I guess he was “ok” after that, because they released him after 2 daysn with antibiotics and other meds. Too many to even grasp. But there didn’t seem to be much change in his overall mental state. Now 3 days ago my sister was getting him ready for bed, she had all his meds crushed and the feeding tube “stuff” ready just like she’s done every night since she took him home, which by the way was in September by the time they released him. SO NOW, He turned completely stiff, his color was white and he physically was just unable to move, ( he can’t walk yet but with help he kind of shuffles) she couldn’t get him to do that, he was frozen. She basically carried/dragged him to the bathroom to get him to hopefully go before bed, he couldn’t bend to sit on the toilet and he lost all control of his bodily functions, so she’s trying to clean him up while 911 was called. He’s in the hospital now. They did a surgery yesterday to see if there was infection on the coil (which I thought was removed) around his lungs. They think maybe it was a seizure although the test doesn’t show that there was one. Here’s where I need someone, anyone with knowledge about this to please help me understand whats happening. He’s now unresponsive to everything, he doesn’t look at Kim or anyone when they say his name. His eyes are mostly fixed to the right and when he does move them he just looks right through everything. Have we lost another part of Greg? Can this be reversed? I’ve never talked to anyone about all this, its just been so traumatic and heart breaking. This is the man who raised me and protected me all my life. Now I mourn the loss of the brother I had, and try to welcome this new version of Greg. Now do I mourn that version of Greg and prepare for a non-responsive one? There’s no quality to life living like that. We went backwards. Sometimes I just pray that God will take him even though I don’t want to live without him, I don’t want him to have to live like this either. He has 2 young daughters he adores. That’s the only time his eyes light up. They haven’t seen him like this yet. So he’s still in the hospital and it feels like all they’re doing is passing I’m on to the next doctor because no one seems to know what to do. I just need to hear someone say that he’s not the only person in the world who’s survived all this, and then just continually starts to go downhill. We’re a family of 8 distant kids and our mom is 76, we spare her the details, as she lives in Idaho and if she knew the whole story she would die of a broken heart. Greg is 54 years old. I just want my brother back, I want to talk to him again, or I want God to take him if he’s suffering. I don’t know if he is or not. But through faith I tell myself he’s not suffering and that he doesn’t have a care in the world. I hope that’s where he is, but honestly, I don’t know where my dear brother is. Thanks so much for letting me tell a bit of my story. A lot of lives changed June 16th, 2016. How do we go on? Why can some people tell their success stories, and Greg can’t tell us anything. He also lost most of his voice from damage from the tracheotomy cord. It never ends…

I wish for you and your family to not have to experience this. As you probably know, some percentage of people who have brain aneurysms die immediately, some die later, some live with various deficits, and some continue life with no obvious deficits. We know of one lady whose aneurysm burst and healed itself. She has no after-effects. We went through a very traumatic time with my wife, but she is doing quite well, even if not as she did previously. We have another friend who suffered an SAH almost six years ago, and her level of activity is not much better than that of a quadriplegic; yet her husband loves her and cares for her. Each one is an individual and therefore different. We need to learn to live with the circumstances we have. We may need to get help somewhere else. It is too much to carry alone. You are in my prayers. Thanks for sharing.

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Michele, first of all please let me tell you how sorry I am that you have to go through this. Your brothers life has been the most impacted, however everybody that loves him lives have changed as well. I do not know the answers to any of your questions, but I wanted to reach out to you and tell you that I’m sure there are people on the site and can offer some insite to your situation. I am one of the lucky ones that caught my aneurysm before it ruptured even though it was misdiagnosed by seven different doctors over the course of nine months. I sometimes wonder what would’ve happened had I not continued to persist, as I knew something wasn’t quite right with my body. I have some lingering deficits from my surgery, but they are so minor compared to what it could’ve been like for me. I’m well aware that one in 50 people have an unruptured aneurysm and I’m afraid for my children who are young adults, and I’m eager to have them tested because I see on the site unfortunately like your situation, that not everyone is so lucky. My heart aches for you and I will be thinking of you. I hope that someone can come forth with some information, as I know there are a lot of people on here who are caregivers, but as you know the site changed since the summer and it seems that some of the regular people that I used to see on here have not been on here yet. There was one woman “survivors wife” that used to post a lot of the time and I know her life was thrown into turmoil when her husband’s aneurysm ruptured. There is also a woman on now – – Palhuc – – who is going through a similar situation. My thoughts will be with you. Take care, Patty

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I am sorry that your Brother is going through so many complications. I am sure that you and your siblings are bedrock.

After reading your post, I would ask his NeuroSurgeon for his notes. It should explain the consequences of aneurysm rupture (location), the degree of SAH (Fisher level), stroke evidence. It sounds like they needed a second procedure to repair the first coil. The notes should explain what occurred. For the infected coils around his lungs, I appears unrelated to the endovascular coiling for this brain aneurysm and possibly from pneumonia. I would ask for the Surgeon’s notes what is referred as “infected coiling”. It sounds that he is facing 2 issues: the affects from the septic shock/pneumonia and affects from SAH. Then I would ask the treating physician to explain the diagnosis and treatment clearly. If it is not satisfactory, then it is time get a second opinion. For this reason, the Surgeon’s notes are important as well as his CT scans and MRI.

Unfortunately, an aneurysm rupture is a deadly event. In my case, I had a ruptured aneurysm but I did survive even with a SAH by the brainstem/cerebellum. I had a minor stroke in the brain stem which I still affects me today after 3 years. In my Survivor group, there is a Survivor who was in a Coma for couple months and in a bad cognitive state like you describe above. But, she has recovered after almost 10 years to the point where she is independent.

I would play his favorite music/songs. Research shows listening to music is healthy for the cognitive mind. I know that your family is trying to protect his little ones to see him this way. So, show him pictures of the little ones so he can have his “eyes” light up. A Neuropsychologist can offer other strategies. I would also research severe TBI cases. Ruptured aneurysm is considered a rare occurrence. (34K cases yearly). There are a lot more TBI cases which results in similar adverse effects on the cognitive mind. Maybe, they can offer cognitive improvement strategies.

I hope the best for Brother.

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Patty6, did you know you can edit your own posts as much as you like? Just click on the three grey dots below your post, then on the pencil icon that appears, and away you go!
Good to know …

Hello - I am sorry to read what Michelle is going through and I pray everything turns around from your brother. I hope I don’t sound callous as I am new to this forum and the reason I looked was I had a ruptured aneurysm on 4/17/17. I need help understanding what I am going through is normal. I know its nothing compared to what some go through, but I am scared. I have headaches everyday and I also get dizzy from time to time. There are times I have a hard time catching my breathe. Is this all normal? I told my neurologist and he says its all normal, but I don’t feel normal. I am still on a blood thinners but suppose to stop this month and start taking 325 aspirin. How do you know if there is something wrong? I would appreciate any advice or comments I could get. I’m afraid everyday of having another aneurysm. Thank you.

hi, so sorry you are going thru this and sorry im just seeing this now, sounds like they did a stent or PED not a shunt? I have a shunt and they said it must remain forever

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Dear 2Fight, So today is the first time I’ve been back on the forum since I posted but pleas let me say I can’t thank you enough for your not only kind, thoughtful comments, but also for the profound knowledge you shared with me. I just want to clear up my wording In my post where I said Greg’s girls hadn’t seen him like this. I meant they hadn’t seen him in that current state of “looking through” everything and everyone. They’re 8 and 11 years old now, but they saw him the day after he was able to be transported back from Nebraska to Colorado. I reread my post today (finally) and saw I wasn’t clear on that part. So anyway, thank you from the depths of my heart for taking the time to comment back to me. I’m so happy that you’re doing well and hope and pray you continue to thrive so that you can help others like you’ve helped me with encouragement, support and your gentle knowledge. Sincerely, ~Michele~

Michelle,

Your original post was very clear. I understood it immediately. It must be hard for the little ones to see their Father in that condition. It must have been difficult for your nieces. You seem to have a strong family. It is so helpful to have support around him. How is he doing now? Please feel free to private message me anytime. As for myself, I am always a positive person. After my aneurysm rupture, I started to go back to Church after a long absence. I resolved a majority of my post issues like balance but still have issues with my vision.

I hope the best for your Brother. Even with small improvements, they are wins.