Brain Aneurysm Support Community

Hope for recovery

Hello, I am new to this group, thanks for letting me join. My 57 year old brother had a brain aneurysm rupture on July 2, 2019. It was considered a large bleed and he had it coiled, he lives in a remote area and had to be airlifted so it was 18 hours after the bleed before he got significant medical intervention. Since the rupture he now has a trach and a feeding tube and is breathing on his own. However he has minimal response to upper brain functions (pain stimuli, pupil reaction). He is no longer sedated, and the doctors say that he should be responding to commands by now. He still has the drain in his skull which has little output now and is straw-colored which may be due to his current infection (he has had 3). From the beginning his doctors have given him a poor prognosis, which continues since he shows no signs of improvement. He occasionally opens his eyes but he does not track anything and no pupil reaction as I mentioned earlier. My question is how long should we actively wait for him to “wake up?” I am aware that even if he wakes up there are probably significant deficits due to how large the bleed was. “Living” like that would not be his wishes. His doctors now want to put him in hospice but we don’t want to not give him a chance but acting too rashly. I know that everyone heals on a different timeframe, just looking for some insight. Thank you.

Welcome to this community! My wife had a brain aneurysm rupture in 2011, had to be airlifted twice, and received coiling about 20 hours later. She exhibited similar characteristics, but they went away much sooner. She was in Critical Care Unit for something like sixteen days and then in neuro recovery for two weeks. Then on to acute rehab for three weeks. So to have those symptoms a month later is concerning. I can’t say that means he won’t wake up and recover–he may. It’s just a different time scale. Everyone is different. Get the best opinions you can and then decide. If your doctors are experienced, they likely have a pretty good idea of what they are seeing. I’ll pray you have wisdom. I wish you the best.

Thank you so much for replying, it helps just to know someone else’s story; I’ve found that most people don’t talk about this part of their journey. I think we know the answer to my brother’s situation but it helps to talk to someone else who has been there. Thank you again.

My prayers go up to you and your family. Get the answers you need and make your decision. Take care

Welcome! Iam so sorry your going through all this with your brother.You must Love him very much.And please know we all understand how hard this is for you and family.I will be saying many prayers for your brother.
Wishing each day he gets better.

Thank you for your replies. I just keep reading of survivors who say that they were given zero percent chance of coming back and here they are now, doing great. I guess at some point they at least had some indicators that there was hope. Thank you again.

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Such a tough decision for someone you love! Perhaps getting a second neurological opinion would help you understand how to do the best thing for your brother. You can do that long distance, with the consulting doc reviewing the scans and notes in the medical record. While you are researching, I think it might also help to visit the hospice staff and talk about what happens if you chose that route. You are right to approach this in a careful manner. The more information, the better. So sorry about your brother and about the situation you are facing!

I too had that bleeding aneurysm at about the same age as your brother … but got almost immediate attention and recovered pretty well. However if this happens to me again I do not intend living the rest of my life , stuck in a bed somewhere, unable to talk or eat good food or hang out with friends. My opinion is slightly weird but if your brother were to be major damaged and unable to live a half way pleasant life I would not like to be saved. He sounds like a relatively young person who does not suddenly want to end up as a wheelchair bound person who cannot talk or recover. Honor who he was and let him go…

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Hello Laura. I’m sorry to read your post, it’s terribly sad. I think that many of us here are so grateful to have come through our encounters with aneurysms. Your brother’s outcome is probably ( can actually only speak for myself) the outcome we all feared most. You just have to listen to the doctors, pray if you’re a person of faith, and be comfortable in knowing what your brother would want. As I am a person of faith, I will pray for your brother and your family that you will find your answer in your hearts.

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Hello Laura
My rupture was also a bad one. Spent 9 days in critical care with my family sitting vigil by my bed. I was moved out of icu and after another two weeks in the same hospital I was transferred to a rehab hospital for 5 weeks. I had to re-learn how to walk among many other things. Progress was slow but with prayers from so many, I was able to go home. I did out-patient for another 5 months and here I am! I’m not the way I was but I am so happy I am here. Now I focus on the things I CAN do rather than dwell on what I can’t do. The title of your post is Hope For Recovery and I will keep your brother (and you) in my prayers. I hope for the best for him.

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Thank you all so much for your prayers and interest in my brother. Last Friday he actually started blinking his eyes, his pupils were better (although each eye seems to be operating independently in terms of the pupil) and he actually moved his fingers when asked to by his wife, and he also responded to pain in all four limbs. However, this has been short-lived as they have started him on a drug to try and stimulate his frontal lobe and he basically has been sleeping ever since then. They are probably going to put in a shunt tomorrow or Friday and are trying to wean him off of the drain in his head. I don’t really know where all of this is going but we do have a new neurologist on his case (part of the old group but has been on vacation for 3 weeks) and he seems to think that he might be in there somewhere. So for now at least, we have tabled hospice. I so appreciate hearing from you all!

Laura, you n your family need to seek god. Put your brother in hospice n let god do the rest. I was 24 hours with brain hemorrhage before they operated on me. They told my husband n family I probably won’t make it out. Well I did with churches all over the country praying for me. I’ve now had that coiled, one stent , a pipe n four more coiled. Don’t give up on your brother. I will pray n ask the church to pray as well.

Laura, Did the doctors say Hospice or Palliative Care? We often think of Palliative Care as Hospice, and they are usually under the same umbrella. Here’s an explanation of both. https://www.nia.nih.gov/health/what-are-palliative-care-and-hospice-care

My brother was a Marine. He developed Stage IV Esophageal Cancer and was placed in Palliative Care at the VA in Loma Linda CA. While I was out there, the team changed him to Hospice Care. Although the care was almost the same, his end of life was quickly coming. The difference was the amount of morphine he could get. He refused it until the day before he died.

I was in NeuroICU for 26 days. I ruptured around 4:30 PM, flown to hospital around 9:00 that night, and they were finally able to stabilize me enough to get the surgery started at 7:30 AM the next day. I didn’t get Rehab as my PCP didn’t know what to do once I got home. So I asked my Neurosurgeon to put me in PT and then Speech. I now have a better fitting PCP who is willing to do the referrals I need.

We all have our stories. Some of us struggle more than others. For those of us that survive a rupture, there’s a two year window that we could end up dying anyways. For each recoiling, I had to start that count again. It’s nerve wracking for those that love us.

Both my parents had Hospice. Dad went straight from the hospital to the Hospice facility. Mom came home and I was her primary caregiver until she couldn’t respond any longer. She had a wonderful team coming out several times a week. I couldn’t pull her up in the hospital bed they provided without her bending her knees and pushing up. The RN got her in that night under caregiver failure. I was upset even though I’d already had at least two of my surgeries. When she arrived, the Hospice doctor came and thanked me as she had no bed sores.

So each has its place and both are tremendously helpful. The thing or should I say young woman that helped me in ICU was the Dietician. She told me I had to have at least 90 grams of protein a day to help my brain heal. It’s a massive amount of protein. I wasn’t eating much. They had a really good protein ice cream in hospital. We couldn’t afford it and the shipping once I got home, so I switched to a high protein drink and bar. Maybe a dietician on your brother’s team would help.

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Thank you for sharing your story with me, you have been through a lot and you sound great. Now that you mention it, only hospice is ever referred to and I don’t know if they actually mean palliative care. Thank you for the article, I learned a lot from it, I thought they were one in the same. I don’t know if you saw a post that I put up a day or so ago, he had some encouraging signs but since beginning on a new drug therapy to stimulate his frontal lobe all he has done is sleep and now they are going to put in a shunt either today or tomorrow. He does have a feeding tube and has a dietician caring for him. I will mention to his wife about the importance of protein. You have been most helpful and I appreciate you taking the time to respond.

Thank you for your prayers, there are many praying for him around the world and we can use all the divine intervention we can get!

Dear Laura, wanted to say what a loving sister your being to your brother.I know how hard waiting for even small movements.I will say prayers for brother and your family.Iam hoping each day he gets better.I want to make sure your taking care of your self in times like this you forget to eat.My heart goes out to you and brother.I know their are many people wishing each day for some change.

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Hello Laura, I had a brain aneurysm a couple of years ago. I was 22 days in ICU and my children did not know if I was going to live or die. For 22 days I went through hell ( I was told) I wish your brother the best. It will take time to recover. But he is going to need lots of patience and love. I was living by myself when I had it and I was told that even the doctor did not know if i was going to make it. I have a lot of faith. I had my whole school praying for me. I believe in the power of prayer. I know your brother will eventually be fine. I had a lot of therapy afterwords. I had to learn a lot of basic things such as learning how to walk, talk and act normal. This was a traumatic experience for me. I was a teacher, I say was because I no longer teach in the classroom. I forgot a lot of things and could not go back. I retired now. I will pray for your brother.
Best wishes to you and all the family because the family also suffers from the aneurysm and should be involved in the recovery.

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I meant to say I am retired now.

Of course, that’s why we are here, to learn and support others. So the shunt indicates hydrocephalus and they need to drain the fluid so it doesn’t push on the brain is my thinking. His sleeping all the time is quite normal for anyone with a ruptured aneurysm. Depending on the medication, it to might be adding to the fatigue, depends which one. You might ask your SIL, which drugs he is receiving and research them. Remember to stay on reputable sights, webmd, nih, not someone’s blog or snake oil site…

Thank you so much!