My story front right aneurysm with sah

General personal-stories
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Hello fellow survivors,

In January i had an aneurysm rupture while i was at work. It led to SAH 3:30 pm
on the 4th. Tje hospital did surgery on the 5th. I had the thunderclap headache, vomited amd lost my vision. I immediately asked a co worker to call an ambulance as i knew somethi g wasnt right. I remembered waiting for the ambulance. My boss saying they were 7 min out. Then i remember being loaded i to the back of the ambulance. I awoke like a week later in iCU. I have poly cycsic kidney disease and high blood pressure. I was not taking my medicine and should have been. I was constantly taking and stopping the medicine to maintain my bP. I have since, taken it faithfully everyday. My aneurysm was coiled and had my follow up brain scan last week. Neurologist said hes very happy with the surgery and how it looks. I see my stroke dr tomorrow. I have 3 girls all in their early 20’s and a grandson thats 2. All my doctors say im a walking miracle as i made it out unscathed. I o ly suffer from daily headaches and light brain fog. Ive always been very spiritual amd believed there was something on the other side but didnt know if it was god. I spent 3 weeks in the hospital and was released to go home. I live with my aunt who takes care of her daughter who had cancer cut from her brain a few years back. It did disable her and i thi k to myself, that could have been me. I am very thankful for all yhe people that prayed for me. My oldest daughter said i would say crazy things. I asked her one time if she seen the little black dancing bear go down the hallway. Or asked her to put my apples in the fridge, tjat was actually the towel holder in my room. I dont remember seeing anyone on the other side, but i wish i had. Perhaps i wouldnt be as afraid of dying as i am now. I have daily fear it will happen again. I cry every day amd have trouble controlling my emotions. I dont have much support and dont want to burden my thoughts to my children as they are already worried enough. They are still young themselves and are not prepared to take care of their mother. Ill be 39 in may. I suppose i am just reaching out for people that have survived for guidance. Will the fear of dying or rebleed ever subside?. Will my emotions continue to be uncontrollable? I know im lucky but i cant help but think, why?

Thanks for listening

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Hey John,
Welcome to Ben’s Friends.

I don’t know if I’d say it subsides, but over time it becomes less of a focus. It’s still there, just not so much front and centre. Initially, for me, it was awful. I often described it as “…like walking on eggshells, just waiting for the next one to break…” But over time we learn what is normal and what is more a sign of ‘Act NOW!!!’ Even years later I still get symptoms that make me question myself ‘Is this it??’ But at a much less frequency than initially.

It’s funny you should say this as I didn’t see them as ‘uncontrollable’ but rather on a hair trigger and my reactions were often disproportionate to the situation. It took some time for me to process information in a more considered manner than having an instant reaction. I can remember I went to a training day, they were talking about a very sensitive subject a comment was made about ‘auto-evacuation’, in other words soiling oneself out of fear and I cracked up laughing, not because it was funny, but because it was something I had experienced. It was the wrong reaction, for the wrong situation and in hindsight was more likely a mask (which the coordinator later came and spoke to me about, she knew exactly). I call it my ‘foot in mouth disease’. I can say the wrong thing at the wrong time or have the wrong reaction for the situation. When I have time to process the information it can all be OK and I have learnt to temper my reactions to give me some time. The issue I have found with taking time is that some people interpret this as an opportunity to answer for me or as a lack of understanding. I can get REALLY frustrated when people do this and, again, have the wrong emotional reaction and EXPLODE.

Ohhh YEA. That ‘Why Me?’ question. I’ve been down that rabbit hole too. I have found that’s a never ending question that simply doesn’t have an answer and I can easily get lost in the Why? so I try not to go there as I can end up blaming self, as if I have any great control over it all. I can tie myself up into knots going ‘Why,why why…?’ but still not find an answer. For me I need to move forward.

I hope this assists in giving my views on your points. Points that I must admit yea, I’ve been there too. I’m not saying I’ve answered your questions as I’m sure we would all have differing views regarding the ‘answer’, each from our own perspective. But I hope it helps

Merl from the Modsupport Team

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Hello John,
The reactions we have are as unique as we are as an individual. Having an aneurysm is both a physical and emotional event and for many, it will completely alter the direction of their life. Whatever level of control a person may have had before their rupture is wiped out in a matter of seconds. That is one of the more difficult hurdles to get past.

Getting back in control is no easy matter and will take time and effort and even when it takes the rest of our lives what does it matter as long as we do not give up? Oh, I had questions and very few answers were forthcoming. A changing brain that was new to me and even when I found some degree of balance it would change again. There were times I felt that I had no life, no place to go, or no place to be. And now looking back I can see that everything was in itself perfect. I needed time and that is where I learned patience. During those early years, I had the opportunity to look at my life, tidy up where needed, and prepare for a future that was yet to be decided.

It took time to unravel my thoughts and feelings and time for my brain to adjust. In the early days, my short-term memory was a disaster, and often when I wanted to say something it would come out backward. I quickly learned not to take any notice of that type of event as to get upset would only add more issues to the pot. Did it really matter if I forgot something or could not recall a word or a name I knew? No, certainly not. Did it matter that I went to the shop for three items and returned with one? Did it matter that I would have thought that today was Wednesday when it was Saturday?

Our lives are different from a person who does not have an aneurysm. Our experiences are different and the quality of our lives and future is something that we may or may not be able to direct. What we can do, is do the best we can with what we have. There are times we need a little help just as there are times we must go it alone.

John

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Johnna, You are still in the very early stages of recovery. Please be patient and kind to yourself. From my perspective, when we rupture, our world goes topsy turvy. Some of us come out okay with little side effects, but for others, it’s not quite so easy. I forgot what my feet were supposed to do to walk, I was unable to have any emotions for several years, I wasn’t aware of my thought processing - I called it “black brain” which of course most didn’t understand. Fortunately a friend’s husband gave me the words and then I was able to share those with everyone including my Neurosurgeon! If forgotten Madere’s husband’s name, but I remain ever grateful for his kindness.

I had to figure out how to either go over, around, or under the hurdles that resulted from my rupture. I’d figure it out one day just to lose it in a few hours and get lost on what I was supposed to do. One time, I had to go to the ER and forgot how to sign my own name! BH told me my name, I was a bit curt and said I know my name, I can’t remember how to sign it. I was frustrated as no get out. I had signed my name multiple times a day at work. When I looked away from the paper, it was muscle memory that took over and there was my signature exactly where it was supposed to be!

It took a phenomenal amount of support from others and learning to support myself that first year. I had promised Dr. Quintero-Wolfe I would not get on the internet about aneurysms for one year. Keeping my word is very important to me. When the year ended, I found this group and have stayed with them now going on about 9 years. I don’t think I could have done my journey any better, the members and the folks @ModSupport have been with me every day. Some go on with their lives, some stay. It’s like life itself with the ever changing stories. I’m very fortunate to have found this group!

As always, I cannot stress the importance of proper hydration and eating protein, our brain uses more energy consumption than any other organ in our bodies, so we need to give it what it needs, especially when we rupture. Speak to your doctor or a Registered Dietitian about what you need. When I was in ICU, they sent a dietitian in who told me 90gms a day. This is what the USA recommends but the WHO recommends 120 gms a day. I do better if I can get the 120 gms every day. It helps a lot for the headaches we get.

Many survivors of ruptures experience PTSD soon after they’ve been released from ICU. Since I had no emotions for the first three years or so, I’ve bypassed that. BH didn’t and did enough worrying for the both of us. It’s not fun and often takes a therapist to help us through it. I’d suggest waiting a few more months as your brain is and will continue to heal before you go to a therapist.

I can’t remember a time that I’ve ever been afraid of dying. I have often wondered why as so many people do seem to be afraid. Perhaps it’s due to a joke my Dad told me for as long as I can remember “We’re born, we pay taxes and then we die, that’s the only guarantee we have in life.” Maybe it’s because when I worked, I saw a lot of death. Though it could be the religious training I had as a child, Christian based, we were taught that there is a God and that we should celebrate, not mourn when someone dies. Your guess is as good as mine. I just don’t worry about it, but I do wonder.

I am no longer a religious person but I still believe in a Higher Power and I see mine every waking hour in everything I look at or do. It brings me comfort and awe, even those pesky squirrels. Most of all, I believe it helps me keep my positive outlook on life. I have friends who are religiously conservative and some who don’t believe in a Higher Power. All are really good people and I don’t care what they believe or don’t, I’m certainly not going to judge them. BH’s brother used to say, “My pay grade doesn’t go high enough to judge others” cracked me up every time he said it. He used to be really judgmental. The very first time we met, he told me I was going to Hell. I got the Bible out of the drawer in his hotel room and told him to prove it. He couldn’t. Then I showed him where he may be judged a bit harder than me. Over the years, he became much, much less judgmental.

We are here for you and can be a great source of support. That being said, I think it will help you and your children if you and they can open up to each other. We don’t need to carry our burdens alone and family can be a good support group, especially if we aren’t throwing skeletons in the closet. The more they understand what your going through, the better they can deal with their own emotions.

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Thank you so much, Merl. I appreciate the responses to my story. My emotions not being controlled i mean crying and not being able to prevent it. It just comes out and i cant control it like i used to. Its like a flood gate i cant close. Before the rupure, i was very strong and an independent individual. Always goal driven and loved working. Now, i seem to be afraid of everything… Instead of planning for the next 5 years, i find myself wanting to make a will and testament in case i die tomorrow. If that makes sense. Whats the point in planning for the future if it could all end tomorrow. I hope this passes of course and i expect with time it will. I know i am still in the early stages. Thank you again. :heart:

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Hey John,

Thank you for responding. I do notice people respond to me as if nothing major has happened. I look healthy on the outside but inside there was damage that they cant see. Its frustrating to know people will treat me as if nothing happened and its nothing more than, “well at least you made it”. I try to explain, but the “Just be thankful youre still here” response doesnt help. I am working through it and know i need to be understanding of them as well. They just dont understand the fear i have right now and how hard it is to cope day to day knowing i have no one to talk to about my inner turmoil or fears. I was a person very in control of my life and now i feel like the unexpected leads the control and i hate it. Hopeful things get better with time.

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Thanks for responding. Yes, i do notice the ptsd and constant worry. I fear for what wpuld happen to my girls and grandson if im not here tomorrow. They still rely on me for so much and have no one else if i pass. Theyre just not ready for life in full. I wish i could turn off my emotions.

I dis have a follow up today with the neurologist that conducted the coiling. He said i was doing great and is releasing me back to work the first week of April. That will fullfill my 12 weeks. He wants to see me back in june for review and an angiogram to make sure the coils havent become.e compact. If they have, he talked about stenting. So i guess we will see come June. My aneurysm was at the basilar apex and was 0.7x0.4 irregular shaped. I found out today. He showed me the scan. It looked big on the before scan but the after scan looked like nothing was even there.

I suppose now i am afraid of the coils becoming compacted and rebleed. I am afraid of needi g another surgery as well. I just hope, all goes well.

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You are welcome John,

Your experience is unique to you and there is no possibility that a person that has not had a similar experience will be in a position to understand what is taking place within yourself. Even the most genuine people that are close to you can use words that you may feel as inadequate or annoying. They are also in the midst of their own struggles to understand you.

It is worth mentioning that the fears that you create become a reality in your daily life and as time goes by they become entrenched and are then difficult to remove. They can become an obsession or even a crutch or excuse which prevents an individual from moving forward.

Might I suggest that you use a simple logic to each fear that pops up, and examine each thought as they arise. Question the thought, its foundation, its direction and conclusion. It is a worthwhile exercise.

John

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Johnna, we certainly understand. I’ve had 4 to repair mine, the last was my stent and seems to have been the best for me. Some members have had even more than I have had, some less. It depends on the aneurysm I think.

What @John suggests about questioning each fear is fantastic advice! When we confront our fears and challenge them, it gives us more control over our lives instead of letting the fears control it. It’s also a way to learn more about who we are and what we believe. Once we learn more, we can make a choice of either remaining the same or changing. A good therapist can help you gain skills to combat your fears. When I figured out that my skills (in therapy they call it tools in your tool bag) needed reexamining, I reached out to a company that offered CBT over the phone which my insurance covered. They actually provide two, the CBT talk therapist and a Life Coach who is also a CBT. The Life Coach gave me good advice for me -“Just do it” :joy:. There is no shame in asking for help, the shame is when we need help and don’t ask.

Having had no emotions for some time, this isn’t the way to go, trust me on it. Emotions are what makes us, us. Otherwise we end up being robotic in our responses. The inability to laugh or cry, to get frustrated and angry or feel happiness isn’t a good place to be. We can’t find pleasure in the good and happy things and we can’t feel sadness when things happen. People have difficulty relating to someone who has no affect, we become very difficult to read as it effects our body language. My parents died in 2015 and 2016, I still had very little emotions and people had a difficult time with my reactions to their passing.

I get the quandary you’re in with your children. I’m going to challenge you on this - what do they need that you can teach them? Write down a list and start teaching them one thing at a time. Is it budgeting? Is it cooking and doing laundry? My parents didn’t really teach us about budgeting so we all had to learn in our separate ways, two of my siblings failed miserably at it but two of us have done well.

Whilst my parents taught us how to cook, clean, laundry, do the maintenance on our vehicles before we had our license and yard work no matter our gender, my nieces and SIL along with their spouses did not teach any of these skills. Their children were involved in sports and other activities which they felt more important than life skills. Parents always want their children to have an easier life than they had. But now their children are grown and they are struggling with life skills and sports have become a thing of their childhood. So the parents are trying to teach those skills and are a bit frustrated. I get confused over the frustration when they talk to me about it and then they get a bit upset with me when I point out they had different priorities for their kids.

My SIL and BIL are struggling with just letting their children grow up and have a tendency to enable our niece and nephew. Enabling isn’t a good thing in this use of the word, as it means they continue to do for rather than teach problem solving skills. We have learned that I shouldn’t talk with my SIL when she calls BH to complain as I’m pretty blunt since my rupture😂

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Thanks for that. Challenge accepted. I have actually started on this course with the budgeting. I will focus on what i can teach them that i havent yet. Youre absolutely right about the emotions. I understand what you mean by “Robotic”. I dont want to be that way. Youve been so helpful with your responses. I hope to one day be able to help others the way you, and the other members that have responded to me, have in hopes to help them as well some day.

For now, i will focus on my recovery and continue teaching my kids the life skills i feel they still need. I go back to work on 4/4. This should help me get back to the frame of mind i need. Im hoping. Ive worked since i was 14 and loved every challenge that came along with it.

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Thanks John

You’ve been very helpful to me with your advice and i appreciate you very much. I wish we could sit down over a cup of coffee and talk about life. I will practice the exercise you suggest. I am forever grateful and will keep you posted.

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Yay on accepting the challenge! The best budgeting advice we ever received was this - our friends came to the States with two children and $1500 back in the late ‘60’s. The passed away a few years ago as multi millionaires. Dorothy used to take their weekly pay and put it in a shoe box (literally). 20% of their pay went to pay themselves first. Then came their needs -housing, food, utilities, insurance etc. the last end of the box was for their wants, if nothing was left over, they wanted nothing. The 20% was invested and they didn’t touch it for a long while. Then they began purchasing land. When we started following the 20% rule, it was hard but doable the first month or so. We were able to pay off our first home loan in 13 years and not the 30 years. It saved us tens of thousands of dollars by putting extra to the principal. The banker told us that one extra payment a year would shave off 7 years I think it was. We decided to put every bonus and raise into the house after our 20% was invested. We just picked an investment company as we are pretty ignorant about stocks. Our first advisor suggested we put some money into stocks of products we like to use so Apple and Green Mountain Coffee were our first ones and they’ve done exceptionally well. Green Mountain bought Keurrig and then went back to being a private company with no shareholders. I wish we would have picked Amazon and FB😂

We also don’t go to Myrtle Beach or Pigeon Forge every year as most folks in our neck of the woods do. We’d take a small vacation yearly but a big vacation every five years out of State. Our bucket list is to visit every State and several countries in Europe.

We feel investing is really important so when the young un’s in our life have kids, we have the parents start an investment account for them and gift $50 to get it started. We then send a monetary gift for birthdays and Christmas that go into that account. Hopefully by the time they’re adults, they can pay for college, buy a car, or put a decent down payment on their first house, fingers crossed. We’re told that many family members and friends like the idea and will put a small amount towards their future instead of buying toys that break and clothes that they’ll outgrow. Sometimes they’ll do both. We also gift a decent amount when they turn 16, before we started the from birth. The only catch is to get that money, they have to open up an account so we can transfer from ours.

We also get an allowance, well we did until the pandemic and have switched to using our one and only credit card. My colleagues at work would laugh at me when I said it didn’t work for me to eat out every day, because I liked my allowance to go to tools I wanted and was saving up for them. We learned when we bought our first home, one has to have a line of credit. I had zero credit history because I didn’t buy anything I didn’t have the money for in my pocket so to speak. So we got a credit card and pay it off every month. BH had declared bankruptcy due to the company going belly up and not paying BH for the traveling done. The bank told us at least BH had a credit history which was better than none.

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A cup of coffee and a chat would be just perfect. Keep smiling

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It sounds like our rupture experiences were very similar. The last thing I remember is getting onto the gurney to be taken to the ambulance and then waking up a week later. Throughout that time my family was told a number of times prior to a procedure or treatment that my chances were 50/50, so I guess I came out on the right side of the 50 a whole bunch of times, or in other words I didn’t die. This got me thinking, at that point if I had died I probably would not have even been aware as I already made it through the conscious scary part of the process. So in a very strange way, looking at it from a different perspective, I feel as though I have lived through the entire process of what it is like to actually die. It was not pleasant, it was scary as heck, but I have been to that line between life and death. So in some strange way I am less afraid of dying when I look at it this way. That in no way means I want to go back there any time soon, .

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Sounds very similar. My doctors told my daughter i had a 15% chance of surviving. Not sure what have them that percentage but luckily, and with a lot of people praying for me, i made it through. I can see your perspective on death and how we were pretty much already there. My fear comes from not being ready to go yet. I still have so much time i want to spend with my girls and grandson. I dont want it to end yet. :cry: Ive come to realize, i cant stop death from coming, so therefore i am not afraid of death itself, just the thought of it coming too soon.

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Yes in the end all those 50/50 chances left me in the elite 15% who survive as well. It sure does make you realize what is truly important and family ranks way up there. So good to have you in the survivor club

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Thanks Kellie, im happy to still be here. Glad you’re here as well. Im so happy to have found this group. Ive noticed ive been able to deal with my anxiety a lot better than i would have on my own and am very appreciative for everyone ive spoke with.

Lots of love :heart:

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