I had emergency surgery for a brain aneurysm the last week of October 2021. I live in MN, USA. I came out here from Green Bay, WI 16 years ago for my job. I am here alone in the state; no family. I live alone and have no close friends, just work aquaintances that do not really know me and live far away. I’ve been working remotely for 25 months now due to the pandemic. I am wondering if I am wasting my time left on this earth living in a place with no family. What if I get another one and I die here alone? I feel like I should move back home to be near family I need help again. I am so lonely and afraid to be living alone in a state (USA) by myself. What would you do? I am so depressed over trying to maintain my life as it is and wondering if I’m wasting my fianl years out here all by myself. Any insight or advice? I really need it.
First, WELCOME!
I’m sure others will offer their thoughts, too, but it is normal to go through these concerns. I’m a patient in one of Ben’s Friends other communities: rather than an aneurysm I have something called an arteriovenous malformation in my brain. It gives some of the same troubles of an aneurysm and one or two of its own specialities. Suffice to say that the worries of “how will I cope if it ruptures?” is the same for me as for you.
I don’t know how liable aneurysms are to recur so I’ll have to let others talk to you about that.
When I was waiting for my AVM to be treated, the key risk was that of it rupturing and giving me a stroke. My way of coping with that included a number of things but the one or two I want to share with you are that I found it much more helpful to talk to my work colleagues or others that I would spend my day with about my condition – and that if they found me unexpectedly examining the carpet really close up or not making half the sense I usually do to dial for an ambulance ASAP.
I also decided to get myself a medical bracelet that had my condition on it, my wife’s cellphone no on it, my name, hospital ID and the like. It cost me £12. And as my condition progressed or was embolised, I bought myself a new one with updated information because it was a cheap and easy way of getting the right care that bit quicker than without. At least, that was my motivation.
The truth is that I had a catheter embolisation procedure to literally glue up my AVM and remove the risk of bleeding nearly 5 years ago now and I don’t feel the need to wear my post op wristband any more.
So I think it’s a very normal thing to worry about at the stage you are but I would hope it will fade and in the meanwhile, you might find some ways to worry about it less.
You’re not alone in this doodoo 
Richard
Thank you so much for your reply Richard. My concern comes from the survivability rate of 5 years after my condition (emergency craniotomy with clip put in my brain). I am 56 yrs old, shouldn’t I be spending my potentially last years near my only child and remaining family? Should I take to bold step to move back to my home state (WI, USA)? I know you can’t really give me an answer; but does it sound like a good idea?
I need to let others talk to you about any risks re resurgence. As far as my treatment is concerned, I don’t think there is any foreshortening of my lifespan, so I’m just resuming life as normal (indeed, that’s what my consultant told me to do).
I’m sure I may have some foreshortening but I’m working on it being far enough away to not worry at the moment. Like you (I think) I was in my 50s when I discovered my AVM and now 5 years older. Unlike you, mine didn’t go pop before it was operated on.
I do think we are in a strange situation with the pandemic and I’m hoping that won’t carry on with this remote working forever. Getting past that will help a bunch.
Honestly, I’d encourage you to grab life back and get on with it. If you can get yourself feeling more ok with it, do. If you can’t settle back into life then moving back nearer friends or family may be the right thing to do but I’d give yourself more time to put your current trauma behind you. From a mental health point of view, that’s what I’d try to do.
It’s not easy and I worried that I wasn’t getting better post op as quickly as I expected. It took me at least 18 months to feel 95% normal but five years down the line I’m absolutely ok with my brush with adventure and I’ve put it behind me. For some reason I’m crazy enough to hang around www.avmsurvivors.org as a moderator and I’m doing a bit of a support role for @Moltroub here in BAF for the moment.
Usually people reply in this forum over the span of days rather than hours or minutes, so I expect others will add some thoughts; and weekends are usually busier than weekdays, so hang in there.
Best wishes,
Richard
Thanks so much for your insight. I really appreciate it.
@Melvin
Hello Melvin
Your question is not easy for others than yourself to answer. I have a feeling that you already might have the answer deep inside you. I ruptured in October 2020 and I can’t imagine how it would have been without someone by my side. To my understanding, having your aneurysms clipped is a good and permanent way to treat them. Mine was coiled during the emergency event and I had to get back six months later for a stent and coils. One thing is clear, as we get older we all need a support system around us. Being all by yourself can be challenging in the future. If you are not able to build this support system around you under the current circumstances, perhaps a move would be the right thing to do. I’m sure you will have many more years ahead of you, I’m 66 and I will try my best to hang around for many more years. This aneurysm tried to end my life but it didn’t get me.
All the best wishes to you.
@Melvin You’ve been brave enough to post a question many of us feel. It’s the what if’s and unfortunately there’s no perfect answer. You have passed the two year mark which is wonderful! Every time I had a repair I had to start my two year wait all over again. My Neurosurgeon would remind me to be careful those two years as risk of demise is higher after a rupture. I don’t listen well until my brain calls me all kinds of names and I have 11 months to go this turn. Unless she started the count over again with the last angiogram, then it’s a 17 month until the all clear sign
Answering @DickD, when we rupture we are in a higher group apparently at developing another aneurysm. I wonder Melvin if you’ve had any imaging or angiogram as a follow up and if your surgeon has given you the all clear yet.
We all live our lives differently. Some need a lot of physical support whilst others prefer solitude. You are close to retirement which is a consideration. You need to determine if your child is willing to be a caregiver for you if something happens. Sometimes family members are not able for a variety of reasons. When I popped my pipe, family thought I should move in with them if something happened to BH. No one asked me what I wanted. I would prefer to live in our home, play on my tractor and figure out a way to cook without supervision.
Thank you for replying to my post. This sounding board helps me to figure out my thoughts. You hit the nail on the head (no pun intended - haha), I’d feel better, less anxious if I had my family near by for support or another emergency. Everytime I get a headache on the other side of my head, I start to freak out a little.
Thank you Moltroub - those are some good points I hadn’t thought of. I am so grateful I found this place (baf.org).
I think we all share that feeling when we get a headache or something else. I have had the same thoughts, is this it ?..…Some level of anxiety seems to always be lurking around after we have ruptured. Things that didn’t use to be adventurous seems a little bit more scary. I guess that’s what happens when we have stared the death in the eyes.
After I had ruptured a distant friend reached out to me and told me about her husband who had a ruptured aneurysm 43 years ago, got clipped and came back to a normal life. Without going into politics, we also have our current President, google and you will find out what happened to him.
I still remember when I was recovering in the neuro ICU, I have very spotty memories from this time, but I recall that I overheard a conversation about a fellow patient where a brain tumor was found. I still remember that I was thinking how sad this was, and I was glad it wasn’t me. My condition was treatable, the other person’s probably not.
Yes, a soundbox is a good way to put it. By asking the question, starting to talk about it, I guess that you will find the decision that is right for you. As far as I know, being alive is paired with 100% mortality. We have to do the best we can while we are here.
By sharing your thoughts in this group I personally think that we process what we have gone through and also helping others.
Well, again, I have to agree with everything the other members have stated.
I believe your initial question of ‘How to plan life after…’ is one we all, at some point, ask ourselves and I also believe the answer is different for everybody. When we go through a traumatic experience we try to put things into some sort of perspective, we re-assess our lives and we try to move on. For some this can be a simple process, for others it can be far from simple. Loneliness can be a nasty beast. When we are alone we have no one to bounce our thoughts off of, no external input, so often all of those thoughts get put on repeat and repeat and…
My initial neurosurgery, back in '96, was also an emergency situation and it all sort of happened around me, I didn’t have time to actually process it all. But post surgery I had nothing but time to think and I got myself in such a mess. All of my family live in another country, New Zealand (I’m in Australia). I’d just started a new relationship and didn’t believe it was fair to dump this load on my then girlfriend, so I tried to manage it all myself. This was a bad idea. I did tell my girlfriend, but only the bare basics and tried to candy coat it all, whilst my own mind/thoughts were running at 1000 miles a second. The problem was that my girlfriend is more emotionally intelligent than I, she could see through the ‘bare basics’ I tried to share. Once those floodgates had opened the emotional weight I had been trying to conceal exploded out of me. For me, this was one of the most beneficial things I could have done, being able to share just where I was at emotionally/mentally/physically halved my stress. That ‘girlfriend’ became my, now, wife
Then they operated, OMG.
My plan was surgery, recovery, then back to work. Only that didn’t go quite to plan and 3 months later I was back on the operating table again having further neurosurgery. I again tried to get back into life only my body was not ready. The medicos told me it was ‘All fixed’, but it was far from anything like fixed. The more I pushed myself the more my body pushed back. I had to learn to accept things had changed and I had to reassess ‘Life’. What is important? What are my life’s aims? What am I capable of? I had to learn to lower my own self expectations and that was difficult. In my former life I taught people with disabilities and had no issue in accepting their impairments. But when it came to accepting my own… OHH HELL NO!!! I didn’t want to accept THIS and I fought against it. Silly really when I think about it, the reality was right in front of me, I had to learn that ‘acceptance’ thing.
This can all be so damn overwhelming. Trying to sort through it all can be extremely difficult when often our minds are running at max speed. So here’s what I do at times. I go back to basics: Make a list of ‘Pro’s VS Con’s’,
‘why should you stay VS why should you go’. ALL of your concerns are very valid. But only you know your own priorities, what is important to YOU. I’ve found that it can help to have it all written out, in black and white. Sometimes things will float into my mind and just as quickly float out, having a list can help keep track.
As I’ve said to others before “If anybody ever tells you this is a simple, easy thing to deal with, they have never been in this position. We know this because we’ve lived it too, so come talk to us”
Merl from the Modsupport Team
Thank you Merle!
Hi! My rupture just happened as well as it was the Monday before Thanksgiving. You mentioned you worked remotely because of the pandemic—could you ask to permanently work remotely? Are you in a position to retire with you being 56 years old? If you can’t work remotely permanently or retire, could you find a job in Wisconsin with similar pay/benefits? I really think you should be with your family right now, so yes I think you should try to move if able to. I know the past couple of months have felt extremely lonely for me with me having to stop my normal life but having my family around has helped. I still live with my parents since I am only 22 years old, and they have really been there for me. I really think having your family around would help. But on the other hand, I know a move can be very difficult and possibly costly, so I know it may not be reasonable. Either way, I wish you hope and luck on your recovery journey!
-Laura
Thank you so much for your response Laura. I’ve talked to some family members and I’m working on a plan to try and go back home and keep my current job working remotely. If this turns out not to be an option for me, I think I will just move back home anyway and then look for another job.
I hope you are doing well with your recovery and healing. It’s been 6 months and my scalp is still bothering me from the craniotomy.
I hope everything goes well with your move. Recovery and healing have been a process for me, as I’m sure it is a nice process with everyone. I hope recovery and healing go well for you. I’m sorry about your scalp.
@Melvin
Good luck with your move. I’m sure it will give you a peace of mind. Let’s hope that time is what we all need to heal.
Thank you! Here’s to good healthy healing for all.
Hi! I read your post and had to pause for a minute and be thankful for my blessings of the family around me. I have an unruptured 5mm aneurysm that the docs are watching. Not only are they great to have around for emergencies but they keep my mind focused on other things. I would move closer to family especially as we get older. A support system is very important. I don’t know your financial situation, so not sure if it’s a possibility for you. However, if you are able to find a job closer to home, I would move closer. You can reminiscence about the early years haha. Well, best wishes and blessings to you and your decision.
ps- I also like the idea of carrying a bracelet. That helps get urgent care fast and creates a peace of mind too. I think I am going to get mine and add lots of bling lol
Thank you for your response. Every piece of insight and advice is a big help to me. I like the idea of a bracelet too. I never even thought of that, Hugs to you.
