I had a ruptured aneurysm 29 days ago. And a coiling 27 days ago. I’ve been online constantly researching. My biggest fear at the moment is a rebleed. I’m also 3000 kilometres from the nearest neuro interventional help. I had to be flown in a medical plane when I originally had my SAH. My aneurysm was 5.7mm on the ACOM artery. I am having trouble not being completely filled with fear even though my whole incidence was filled with luck. I welcome your thoughts and advice. I am just hoping to discuss the whole thing with those who have been in a similar position.
"I've been online constantly researching."
This is where your fear is coming from I would guess, Dr google is great at scaring people IMO because you get to read about worst case scenarios etc. I think accepting what happened and moving on with life is the best approach. I never gave any thought to it after my rupture even though I had a pretty rough ride of it (I was out of it for most of a month in hospital, had severe vasospasm and repeated procedures for that), and was told I had two more, one a similar size to the one that ruptured, which I waited 6 months to get coiled because the neuroradiologist was going away for 6 months and I didn't want another doc to do it (but I was given the option of going ahead sooner if it was causing me too much anxiety). But it can come as a real shock to be told what happened when you become lucid, I felt the same. You are past the high risk period of a rebleed though and you need to make sure your BP is kept under control and worrying about the what ifs isn't going to help with that. Can you speak to the neuroradiologist? They may be able to put your mind at rest.
You might think this is out there, but you might want to consider meditation. Right now I am trying a 21 day free meditation with Deepak Chopra and Oprah, which started today. I have delayed my coiling until my health improved, but living with the anxiety while waiting is probably not helping me, so I am doing gentle yoga and trying to calm myself.
Has your doctor suggested anything to help you?
Mike, Welcome! Campanile has given great advice, if you don’t like the word meditation, call it breathing and breathe deep and slow, exhale completely, breathe again. Do this five to ten times numerous times a day, before you get out of bed, before each meal, before you go to sleep, anytime you change tasks, rooms, or body positions. It’s relaxation breathing.
My Neurosurgeon told me to stay off the Internet for a year, and I did. Sharong and I have had similiar experiences, I also ruptured, 28 days in ICU, Vasospasmed 26, and because of my need to follow precisely what I’m told, lol, they found another aneurysm. I had an unusual multi lobed little thing and another grew behind it. I think sharong has sound advice about the Internet, let me explain why I think it’s good…
I didn’t get on the Internet, so my knowledge came from my Neurosurgeon and her team. This knowledge was just based on me and my brain, no one else. Though other doctors wanted to do other things, mine knew what my body was responding to or not. It took about 18 months for my brain to stop healing. Not much time given I am 55 now.
You live about 1850 miles from a Neuro team, but your brain did stop the bleeding when you ruptured the first time. You had excellent in transit medical care from the experts who flew with you. My helicopter team kept in contact with the hospital. My guess is so did yours. My neurosurgeon didn’t see me until the next morning so I had about 16 hours between onset of rupture and surgery. I’m going to guess the medical team that flew you knows a good bit about SAH, and if they didn’t then, I’d bet a buck they have researched and talked to others about SAH since they flew you. And trust me, I don’t bet if I think I have a chance of losing.
i understand your fear of another bleed. The neck of my aneurysm stayed open 1mm for awhile which really mucked up my way of life (lol). Is your neck open or has it been completely sealed? And in all your Internet searching, what are the odds a month out? I don’t know how Australia does things. Heck in the USA, doctors do things different state to state and hospital to hospital. There are guidelines but they also use their own beliefs and experience.
What about follow ups? I know my Neurosurgeon did an angiogram every six months. At 18 months she said it was enough, now I will get MRA’s and MRI’s. I can tell you in Feb for how long, but today I don’t remember the time frame. I know at first it was angiograms every six months for two years, to be followed by MRA/I for awhile and then once every five years. I also have a little pituitary tumor she is following so I may be getting more than others. So, do they do a follow up in Australia? Do you have to fly every time you have to see the Neuro people?
I’m going to take a big leap and ask what else is consuming you? Other than the rare possibility of a re-bleed? I think for some, there’s a big loss of control over simple life matters. Also have you always been a person who frets or worries?
Big hug and take a deep breathe!
You're not alone Mike! I had terrible fears after surviving my SAH as well. Especially when I got a headache, I used to lay there and just pray and pray. I had just been scanned, there was NO WAY I could have a bleed again, but my fear and anxiety messed with me many nights. Almost 2 years out, and one emergency room visit with a "thunderclap headache", I'm starting to breathe easier. As long as you keep up on your regular scans, cling to that logic.
I think that once you've had an SAH, being alone, headaches, or other things can trigger a bit of PTSD. It's SCARY to think that our brains could be bleeding, and worse yet, that we are ignoring it and meditating through it?! If possible, seek assurance from your medical team. Put your faith in them, and their word.
You're a miracle. What you do from here on out is up to you. You can embrace the miracle, and move forward with joy and gratefulness, or you can move forward in fear and anxiety. I have to choose regularly, because fear and anxiety are my first response. This WILL knock you down mentally from time to time, but it doesn't have to knock you down every day. Here's to TOMORROW being a joy and gratefulness kind of day for you. I'm going to try to have one too, even though it's raining and the barometric pressure seems to affect my incision point and make some parts of it lumpier and bumpier than before...but nope, I'm not going to Google that :) Why? I've had nearly 10 scans since my original surgery, with the last one being 6 months ago. Scans say my head is OK, I'm going to believe them.
Hello Mike -
I can understand where you are coming from. Let’s back up a bit here. The doctors would not have released you to go home if they believed there would be a problem. Are you keeping a journal. Please do. I started off with anxiety and would then go to fear. Talk to your doctors about this. Going for walks in the beginning helped me to get out of me. It has been almost two and a half years. I kayak seven plus miles four days a week and when I do not kayak I ride my bike. The exercise relaxes me along with meditation. You are still healing - be good to you.
Hi Mike, definitely a very scary time for you. I agree with the others who have commented. Definitely not alone & the thoughts & worries you have are to be expected. You have just endured something insane and survived. I found music really helped distract me. After I had my crani I couldn't really concentrate for long periods so I don't think I read a book for over a year & I'd forget too much of the movie by the 1/2 way mark. But music I could escape into & it took my mind off what was happening. It also helped to listen to a catchy song before a CT-A so I could sing it instead of a nursery rhyme. I just had my 4th anni-versary & I still have these thoughts. I had a bad flu recently & I was so worried if I coughed or blew my nose too hard I'd blow an ann-clip. I know this was just sleep deprivation and feeling flat from being sick that was playing with the ol' anxiety levels so I made myself go for a walk with the headphones in.
This site is great with its fact sheets & support but ... if you want something more Australian than you might like to check out Aneurysm Support Australia (Aussie Annies) on Facebook as well.
I'm up in Queensland (& my Neuro is in Sydney) but there are people in the group from all over Aust who are on this site as well. Sometimes it helps to connect with people who went to the same hospital or are in the same time zone. I went to a lunch in Sydney that some of the girls organised and it was fantastic.
I had a 16 mm rupture and spent 2 months in the hospital. I also read everything I could because of an 80 percent partial coiling due to complications. 2 months after being released I had to go and get a stint put in with more coils. My last MRA showed another 2mm that they are now watching. Yoga has helped to calm me as well as just embracing each day as a gift with my family. We are all miracles and can’t get caught up in all the research for what could happen. I also was so nervous after the first rupture but for the past month, I am finally at peace with taking one day at a time. Best of luck and keep positive.
Mike-
In April 2012, I had a SAH and then it healed on its own and had a re-bleed during coiling. I spent about a month in the hospital. I had no issues. I went back to work 2 1/2 months later. Then a year later in 2013, I decided to have a craniotomy and have it clipped. It has all been great-- I just take it one day at a time. I do yoga for stress, breathing, drink lots of water and have gratitude for the gift of life. As everyone said, don't be afraid to reach out to your doctor. Whenever I get worried, I send an email to him. He reaches out and I feel much better.
My aneurysm ruptured two years ago. I was flown to the best hospital in San Francisco. I was on vacation when this happened. Scared my family. I don't remember much. My recovery has been great. I had physical therapy and speech therapy for a short time after leaving a rehab in San Diego. I know that each person is different and yes it is scary, I am still scared of having another aneurysm and so is my family. My rupture was so bad that I had to have three clips put into my brain. I have a medical alert device that I have by me when I am home alone or when I am out and about. No problems in the last year and my migraines have disappeared. I have had the migraines all my live even as a child. Best of luck to you. Prayers for a wonderful recovery coming your way.
Hello mikeyour not alone I’m goin on 5months since my Rupert and clipping I’m still feeling fatique depressesed unbearable pain . One day at a time it’s not easy. I find being calm and quiet and just breath it helps me Take it easy do you .ileana
I had a ruptured aneurysm in 2012, 3 mm and it got coiled, got very lucky as well, no deficits, even got pregnant 7 month later after doctors gave me the ok. The first 2 weeks were the most critical they had told me. So for the first two weeks I was in ICU then for a few days in step down before I got released. The fear will stay with you for a while and I also started to question life and why I was still alive, emotional rollercoaster. With every checkup it will get better and in between I tried to enjoy and be thankful for what I had. Keep your head high! The worst is over! Now in 2015 its only the yearly checkup that reminds me of my coil.
hi mike,
Hows things going for you now? my name is simone and I live in perth.I suffered a rupture and a SAH in march 2013 and I myself know how scary it can be and so can a lot of others on here,just know your not alone....the road to recovery can really take it out of us emotionally and not knowing how we are going to cope wit changes. and having fears is normal..even myself I still have fears....if you need someone to talk to and listen I am here....feel free to email me I can the pass my number on that way if you wish
simone x
I had my ruptured aneurysm coiled 5 years ago. I had a tiny bit of aneurysm remaining that could not be coiled and I always worry that that bit will rupture. Like you, at first, the fear of another was huge and I spent a lot of time on this sight clawing at stories of recovery to encourage me. I made an excellent recovery though and went back to work after 2 months with no mental deficit. The fatigue in the first few months was the worst thing. I found that difficult as I’ve always been an active busy person. I always looked for stories of people who had lived a long time after SAH as I wanted reassurance that my life wasn’t necessarily going to be short because of what had happened. The truth is that you pick up your life again and eventually the fear subsides. These days, I hardly ever go on this site because I’m just enjoying living! I bet there’s loads of survivors who are out there, fine, and forgetting to visit this site, like me! I’m sure you will get your confidence back. Let the whole experience teach you to value every day of life you are given here on in! Practice gratefulness as it is the way to happiness. For myself, I have had 3 grandchildren since my SAH and am so grateful to have met them. They wouldn’t have known me if I’d died! I promise you your fear will lessen as the weeks go by and you will start to believe in your ability to live again. Just make every day count and once you feel better, be determined to savour and enjoy every precious extra minute of life you are given. You are in my prayers right now.
My wife's situation was very bleak at first with her SAH, and she doesn't remember over a month's worth of history from that time--she was in the hospital 51 days with therapy continuing after. But she has recovered well. It's almost four years out now. No one can promise anything, of course, but your situation is very good. Be encouraged. Probably most wonder whether something can go wrong after, but often once the aneurysm has been fixed, that's it. There may be after effects, but the situation will likely not repeat. You came to the right place. People here know what you are experiencing and are supportive.
It’s a new path, a new journey you’re on now Mike. It’s like going through a grieving process and making peace with ourselves. I live in fairly remote places too & have had to be flown off islands for intitial ruptures and subsequent surgeries and scares. Just a few weeks ago I was out hiking on a beautiful autumn afternoon and started to feel terrible, scared I was rebleeding and going to drop dead right there. I didn’t and made it home and realized the beginning of a miserable sinus infection. That fear happens every time I get sick now, but we all will have our departure. I have 3rd untreated, hard to treat anuerysm, that I think of like a grenade- I try to live life fully, yet not pull that trigger. I truly appreciate all the love in my life and every single day, and focus outside my head and myself, at peace with whenever my body is done. And totally ok for me, maybe not my partner, if that’s after literal mind blowing sex 
Mike,
all of the messages are correct we have all dealt with the fear and anxiety. Many have said take it one day at a time. Take some time for daily meditation. I had a craniotomy 4 years ago. I had two MRI after discharge about a year. For me life has been much easier by praying daily. Anytime I feel had fear I pray no matter where I am. I live alone and at time that scares me. Prayer is like breathing. Its what I need and has helped me live daily. God is good and he has given you a miracle. God Bless Herlinda
Mike, I know it's scary, but they will have checked before discharging you home that you don't have any more aneurysms to worry about, and that the ruptured one is properly coiled and sealed. I was 'lucky' (Hah!) too, as I collapsed outside our apartment building and some Good Samaritan strangers saved my life by calling an ambulance - it was New Year's Eve, so they could easily have thought I was just some drunk, and walked on by. That was back in 2010. What a way to start a new decade! This is a great community, you have come to the right place, because we all understand. IT DOES GET BETTER - HONEST! Ask whatever you want, or just let go and whinge - you'll get loads of support here.
I honestly didn't expect anyone to reply so I just wanted to say thank you.
I think the fatigue is the most confusing thing. I was so busy before that I find myself constantly asking myself if I feel tired because I am not doing anything or am I being lazy. I also have a little bit of a fit every time I get a slight headache. I stop and wait thinking "is this it?"
Does anyone know what would be too high a blood pressure? I did an experiment yesterday. I had to deal with my employer and there was some things that were agreed to then denied so I wasn't happy to speak to them. Anyway before and after the phone call my BP was 131/69 then 169/89.
I know I should speak to my doctor but I really cant seem to make that happen. I have been trying to just get my appointment dates as I have to travel a long way and am being pushed around the system speaking to several people every day but getting nowhere. Anyway I value all f your input as I think this is only feedback at the moment