It isn’t easy… our thoughts and prayers are with you both.
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Thank you so much
Tracy, I’m glad to read you have support there with you. It’s a difficult place for you to be in. I know it’s hard to wrap your head around all of this. When we rupture, the blood in the artery goes into the cerebral spinal fluid, it can cause a lot of brain damage. Then the vasospasms can cause more as the blood isn’t going to that part of the brain for a bit and they can cause ischemic strokes. But this is why, even though someone may be healthy, they don’t always survive.
Feeding tubes give our bodies the sustenance that is needed to keep us alive if we cannot eat. To install a permanent one suggests to me that they may feel he will wake up, to remove one suggests to me that there isn’t any hope. These words are blunt, I do apologize, I can’t think of an easier way to put it. Remember I am not a Doctor nor have any education in the medical field, just experiences.
BH and I discussed numerous times over the years the “what if’s” and what we wanted to be done. We didn’t know a thing about cerebral aneurysms until I ruptured. That first night when I did, I would keep waking up and tell the Resident what I wanted, BH had my Health Care POA, etc and was told they weren’t ready to discuss it. I didn’t want BH to have to make the decisions you’re having to make. I will continue to pray and ask God to be with you both during these troubling times.
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Thank you for your time and kinds words. They moved him last night to a r regular room. I don’t know if this is a good thing or not. I’m not putting him into it hospice so he can be comfortable and they starve him to death. I know hes in there and will come back it’s just going to take time. What do I do?
It is extremely hard to be in your shoes. I tried to share some of your story with BH as I turn to BH for caregiver things, but BH got all upset remembering what the doctors were saying which was basically don’t expect me to survive to the next day. This went on for 21 days apparently as they weren’t telling me.
I was my parents caregiver after I ruptured but at that time I had no affect (emotions) and everything had to be black and white. So I pressed all their doctors to just come out and say it so I could understand. I would tell them to use the K.I.S.S. Method when talking to us. I just stuck to my guns in what my parents said they wanted and challenged all the doctors when they would say one thing and then change their minds in an hour or two.
When one of my brothers was dying from esophageal cancer, our oldest brother called me to come back to California to help. Rick said they were exhausted going out to the VA every day. He said Darb was in the Los Angeles VA hospital. So we flew out after calling my parents who had my cousin fly to Missouri and drive them to California. Darby was about 6’1”. He wasn’t in L.A., he was in Loma Linda. The RNs didn’t even know my brother had family, they’d never seen our oldest siblings. Darb was admitted in January and we flew out in June as soon as we could get a flight. I used FMLA and stayed with him for the full 12 weeks. I had to step up and ensure the VA was following their mission statement with his care. The RNs were really good. The Residents were hesitant to just tell the truth, he was dying, it didn’t take a rocket scientist to figure that out. But to get a doctor to put things in words non-medical folks understand is very difficult to say the least.
At one of the big family meetings, I challenged the entire group. Our family doesn’t believe in false hope, so don’t give it to us. We can deal much better if we know and understand what is going on, so just be honest. How hard is that? The doctors couldn’t find the words but fortunately Darby’s Psychiatrist or Psychologist (forget which degree) was there and it fell to her. From that day forward, we were told the simple truth. Whilst our oldest brother said I couldn’t take him out of the hospital, I did many times to places he felt like going to with the RNs blessings. Some days he would tire quickly and want to go back, other times he fought through so he could visit with his friends at the American Legion Post where he was their Captain and Chaplain.
The day I had to leave I went in to say goodbye to him and all the guys that called me their Little Sis which is what Darb called me as I’m the baby in the family. Lots of hugs and tears as I knew I wouldn’t see my brother or the other guys again. As I was going down the hallway after saying my goodbyes, one of the RNs told me if I left he would die. I can’t tell you how much those words hurt me. But I’m a firm believer we don’t go until it’s our time and nothing can stop that.
My parents continued to stay in the little one bedroom house they had rented. My brother, his wife and our oldest sister never came to the hospital after I left until the last day. Debbie had only come from Vegas twice while I was there, despite her telling everyone she was going every weekend. I was not happy with my older siblings to say the least. About a week or so after coming home, I had a dream of some of our family who had already passed, the ones that Darb was closest to and a few we never met. I woke up like a kid on Christmas Day and was so excited I found it hard to wait until I could call him. When it finally was a decent hour and we knew he done his morning routine, I gave him a call. I told him about the dream and how the family was waiting for him and all they said to me. Basically not to be afraid.
My brother died the next morning. He was 6’1” and weighed about 41 pounds. We had his Memorial Service on my 43rd birthday. Our two oldest siblings refused to come. Our niece’s husband was there in his Marine dress blues which Darby would have liked as he was also a Marine. Our nephew, Jason, was there in his dress uniform. And Brian presented the flag to my Mother. The room was filled with family friends, his friends and the majority of people from the Post. People had to stand as there were no more chairs. They lock the doors but when we came out there was even more people outside. The American Legion does a fantastic service.
I’m unsure why I told you about my brother, just felt the need I guess. When we need to let go, it’s harder than heck. But deep in our hearts, we will know when. I’m still praying that Tony is still fighting and that you can feel the love of God. Please remember to breathe, eat, rest and ask questions to those things the medical professionals say you don’t understand.
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Good Morning. Thank you for writing it helps me get through this whole life altering event. I’ve watched many many videos on Brain Aneurysms and many people have survived and are back to normal lives. I know he’s still in there he’s just going to need time to heal.
We don’t have much money at all and He can’t work and nor can I at this moment. It’s too soon to go back to work for me. The hospital is 45 minutes each way and is ever so tiring. I’m not sure what the doctors have planned for him just I’m not giving up on him. He’s strong and healthy other than major injury.
From what I have told you what do you think I should do besides fight for his life.
Maybe I can offer a little different perspective…
It is confusing why the medical staff is offering two very different solutions, essentially asking you to flip a coin and pick one. Choosing life or no life is not a trivial decision and they should have some strong evidence to make such a decision.
In my own case, when my wife ruptured, I pleaded with the medical staff to be brutally honest with me. I’m an engineer and dealing with raw data/information is the only way I know to process decisions.
On the first day, the neuro doctors told me that she would be in the ICU for 21 days then an acute-care facility for probably a year or longer. When family who lived further away asked whether they should come immediately, I told them to wait until the second day since we seemed to have had time. Well, that was a huge mistake!
Later on I got her medical records from being in the hospital and read them many times, being that I am an engineer and not a doctor or nurse. It became clear to me that she was in grave shape almost from the moment of the burst. I am convinced the neuro staff thought to themselves and, maybe, discussed “off the record” amongst themselves, that she would not live more than one or two days. 28 hours is what it ended up being. I am sure that sitting in a courtroom explaining to lawyers why they did or did not do certain things were on their minds. If not a courtroom, then a conference room full of hospital administrators explaining the same things. Either way, their livelihoods would be shot.
After reading your story, the questions I have, and these should have straight answers, include: is the brain stem uncompromised? If so, there is hope. Is he still bleeding? If not, there might be hope. You mention a feeding tube; is there no breathing tube or artificial breathing assistance? If not, that indicates fundamental parts of the brain are working and there is hope. Are both pupils the same size and does either one react to light? Does he respond to painful stimuli? Apparently, there was some electrical stimulation used on my wife which she did not seem to respond to. If he does, then there is hope. How much medical effort is going into controlling his blood pressure and heart rate? The more he can do on his own, the better and there is hope. How much blood or fluid is in the brain and where? This might be hard to tell. Has it gotten into the spinal cord? That would not be good. Blood and fluids can increase intra-cranial pressure which can lead to unconsciousness; maybe that is him. Surgical or drug intervention should be investigated. Have they done a lumbar puncture? Should they?
Blood released into the brain is a serious injury and it takes a long time for the brain to remove. That might be why he is not waking up. If he does, he is almost certainly going to be a different person and it will take a lot of care and tremendous patience to get him to a stable place.
You should not have to make a “flip-a-coin” decision. Seems like they owe you more explanations. I think that I would vote for life until more clear explanations are given.
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Thank you for the very specific questions that should be asked. I have an unruptured mid-basilar aneurysm that was repaired in April of this year. I want my family to have as much information as possible before making a life or death decision for me in case I develop more aneurysms or this repair doesn’t last.
I had one aneurysm burst it was 7.7 and i was out for 9 days before i woke up. It does take time for the brain to repair it self. Just keep your hopes up. I will be praying for you and your family.
Thank you so much… It really helps.
You are welcome.
Give it time, his body just went through what most people don’t live through! He will do great let him heal, be patient!
Thank you. They have moved my husband to the 3 floor now. Hasn’t really woke up yet. Please pray
Thank you so much for helping me through this. This is the worst thing I’ve ever been through. It’s been almost 3 weeks now with little improvement. I know how bad it is.
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Tracy, ask to speak to the hospital Social Worker. Every hospital in the United States has them. I recall there was one that was always in Neuro ICU, always standing at the Nurse’s desk. She probably introduced herself when I was first there, but I don’t remember.
I didn’t come out unscathed from my rupture, life changed dramatically for us. In hospital, I stood up and BH came in to see tears rolling down my face, I didn’t know I was crying. All I knew was the previous year I had lower lumbar surgery so I could keep walking. I couldn’t remember what to do once I stood up. I recall the RN arguing with me nicely of course, that I hadn’t been released to walk. I was so concerned that I would lose that ability I told her to change the order.
Things I could recall with crystal clarity weren’t within my grasp anymore, my brain has never functioned well enough for me to return to work. I write much better than I can speak and if tired or stressed, my speech gets hit really hard, as well as my ability to process information. I can lose my temper pretty fast now when I used to have an extremely long fuse. Although I used to tutor statistics, I can no longer do simple math.
If Tony isn’t on the Medi-Cal program, see if the Hospital Social Worker will help you apply, again do not sign any paperwork with just your name, remember to use the word “for” after yours then write his name. You do not want to be responsible for any of his hospital bills and they will come in droves from everyone that has been involved in his care
Ask the hospital Social Worker if they can give you tokens to ride public transportation. If she can’t, maybe you can get them from your county’s DHHS.
Have the Hospital Social Worker get Tony on full disability so regular Medicare can start sooner rather than later.
@JoeF has given you some excellent advice, please ask those questions to his doctor.
For me, when I ruptured, the blood did mix with my Cerebral Spinal Fluid that is in the subarachnoid space. Thus the SAH (Subarachnoid Hemorrhage) diagnosis. Here’s a drawing of a brain with blood in the subarachnoid space Brain aneurysm: What happens during a brain hemorrhage? - InformedHealth.org - NCBI Bookshelf. My blood was a good bit more than the drawing.
Here is another article on CSF (Cerebral Spinal Fluid) in the brain Anatomy, Head and Neck, Subarachnoid Space - StatPearls - NCBI Bookshelf.
When blood enters the CSF in the brain, it goes into the CSF in the spine, think of it as one big loop. Here’s a drawing I found Snapshot: What is Cerebrospinal Fluid (CSF)? - National Ataxia Foundation
It’s a lot to digest with all the stress you’re under, take one step at a time. Take notes and ask the doctors to dumb it down for you. It keeps them from sliding into medical jargon that most of us hear as a completely different language. I do it all the time with my doctors. I also apologize it has taken me two days to type this, my brain has been wonky.
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Thank you so much and I have notes and will do just that for the meeting I have with the doctors on Friday. This is going to be the hardest Thanksgiving I’ve ever had.
I imagine it is Tracy, but you will get through today. I’d like you to read @John’s reply to @Soconfuse found here Trying to control anxiety - #19 by John. He responded with a beautiful answer that really brought me some joy. I think it will help you as well. May today give you peace, love and clarity.
Hi Cathy,
I was just reading a post you wrote 11 months ago regarding your anniversary of your “new” life. I had a double aneurysm rupture in August 2022, and after reading your post I wanted to know how long did it take you to accept your “new” life. I don’t believe I’ve fully accepted it yet, so I’m wondering.
I’m fairly certain that I thought I would return to “normal” in September 2014, 7 months after my ruptures. I had 14 coils and stents to treat my two ruptured annies in Dec 13.
Well when I realized that I couldn’t resume my work after 27 years of working in the same place (a job that I loved by the way) I had to resign myself to the fact that I was living my “new normal”.
It isn’t easy to accept the fact that this is a different ‘me’ now. I’m really grateful for the things that I can still do though! My invisible disabilities are still with me - some of which are a bit embarrassing. I can’t do things very quickly, can only do one thing at a time (I used to be an efficient multi-tasker) can’t follow more than one conversation at a time in a “crowd” of three people and I still have difficulty counting loose change in my wallet. Oh and I cannot listen to music! My short term memory is terrible too.
I’ve passed my 10 year annie-versary now and I have taught myself new things…things I never would have considered doing in my old life. I am grateful that I still have my sense of humour too! Life is so much easier when you can laugh. I feel sad for those who walk around carrying the weight of their world on their shoulders too.
My advice is to teach yourself something new, get out for a walk every day and look around at things we never take time to actually “see”. Life is beautiful!
I wish you joy and peace in your “new” life!
Blessings
Cathy
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Thank you for your response. I have two titanium clips for the two raptures I had. I stayed in the hospital 3 months from the time of my rupture because I had other complications. I am back to work and blessed to have a supervisor who was willing to ease me back into work and rewrite my job responsibilities so I could ease back in. It has been a difficult start to my new normal. I’m still working on it. I am as you said doing things that I haven’t done before and really enjoying it. I’ve been doing yoga since April 2023 and really enjoying it. I have become more spiritual, which has really helped me daily, because you are right life is beautiful and before this happened to me I never took time to really soak it all in.
Besides this online community do you have any aneurysm support group you participate in? I’ve been trying to find an aneurysm specific group because I go to a support group in person but most of the survivors are stroke survivors.Thank you so much for responding to me. I don’t feel like a unicorn anymore to meet someone else who had a double annie.
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January 17 |
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I’m fairly certain that I thought I would return to “normal” in September 2014, 7 months after my ruptures. I had 14 coils and stents to treat my two ruptured annies in Dec 13.
Well when I realized that I couldn’t resume my work after 27 years of working in the same place (a job that I loved by the way) I had to resign myself to the fact that I was living my “new normal”.
It isn’t easy to accept the fact that this is a different ‘me’ now. I’m really grateful for the things that I can still do though! My invisible disabilities are still with me - some of which are a bit embarrassing. I can’t do things very quickly, can only do one thing at a time (I used to be an efficient multi-tasker) can’t follow more than one conversation at a time in a “crowd” of three people and I still have difficulty counting loose change in my wallet. Oh and I cannot listen to music! My short term memory is terrible too.
I’ve passed my 10 year annie-versary now and I have taught myself new things…things I never would have considered doing in my old life. I am grateful that I still have my sense of humour too! Life is so much easier when you can laugh. I feel sad for those who walk around carrying the weight of their world on their shoulders too.
My advice is to teach yourself something new, get out for a walk every day and look around at things we never take time to actually “see”. Life is beautiful!
I wish you joy and peace in your “new” life!
Blessings
Cathy