The blessing and curse of the internet – with each passing day I question whether to have brain surgery. The list seems infinite for what could go wrong during surgery or in recovery. And then of course there are the limitations of what I can’t do even if the surgery is successful. And now I’m reading about personality changes – not that I’ll become a warm gentile man, but it seems that “personality changes” is a euphemism for personality disorder. I’m a bald guy, actually I shave my head every day, and I’m thinking that looking like I walked out of a horror film might be okay; I guess I can wear a hat. No, it’s not okay. Last week the obsession was about gaining weight because I won’t be able to jog or lift weights for months, if ever. I’ve already added 10 pounds since diagnosis 75 days ago. Euthanasia is not an option because an aneurysm does not meet the legal definition of terminal, not in the US and not in Switzerland. Death is not my concern; living as a fraction of who I was is.
Hey, @anon40342975 welcome to BAF support!
It’s one of those clubs that nobody wants to belong to (but hopefully we can help you a little along the way).
I have a slightly different vascular condition but with very much the same worries as you. When I first got my diagnosis, I found one of Ben’s Friends’ other support communities and I’d say 50% of the time I was encouraged by what I read – learning about our medical condition helps some of us come to terms with this unwelcome diversion from the path we thought we were following – but about 50% of the time I was frightened, maybe horrified, in the same way as you by people coming away from a stroke or their operation with varying side effects.
I to-ed and fro-ed over that situation for months. The best thing I found was to choose to be here and be encouraged when it was being encouraging and to stay away a little when it was not.
The key thing is, we’ve pretty much been through the same stuff, so we know what it’s like, and we’re here to pull you up a bit, lean together, and get you through, whichever plan you decide to follow.
As for me, I decided I was getting less well over time and that helped me decide I needed to have an operation. In fact I was convinced I would not be here if I hadn’t. Like I say, I have a different (though similar) condition, so how I was being affected will be different from you.
It’s great to have you join us! The main thing I’ll say is you must feel free to talk about, ask about, anything you need. We’ve been there. We know what it’s like.
Welcome!
Richard
Hi David
Welcome to the club no one asked to join. Everyone is different so you can’t take the “internet” as gospel. Sometimes you have to walk before you can run or do anything else but it beats the alternative. Good luck with your procedure.
I don’t know why this came to me just now, but I wonder if I can find stats on the number of people who had an autopsy in which something else ended their life rather than the aneurysm. My neurodoctor said I could monitor for a year, but was unable to give me a green light to jog, etc. I couldn’t see myself just sitting around waiting for a rupture.; so I am counting the days until surgery. From where I sit today, it seems like a surprise rupture would be easier for me to mentally manage. I like Florida, actually spend February’s there – but I’m thinking not February 2025.
David,
So sorry to hear of your struggle - sounds from your first post like clipping is your upcoming surgery? I had endovascular repair so I can’t compare my experience — I can only wish you the absolute best. Please keep us posted as it approaches - we’ll be cheering for all to go well for you and following in your journey.
One thing we do have in common which made me reach out - I too am far less afraid of death than I am of major disability. But I say I fear disability with caution - there are things we can adapt to and rise above, and the only guarantee we have is this moment on this day. Just being here matters to those who care about us, even if we’re a little less than perfect. Plus normal is relative, and sometimes downright boring. But there are levels of disability that we all dread to even consider. Maybe you are far better mentally equipped to deal with it sounds like you are able to hold that up to the light and take a closer look at it. I shove it off the deep recesses and hope to never have to face it.
It occasionally comes to mind for me because I have a remaining aneurysm that right now would be of higher risk to treat further than it would be to leave alone. And I would NEVER be described as stoic - cool and calm is counter to my nature, so we’ll see what the future brings. I know the likelihood of making it through the rest of my life without sharp rises in my BP periodically seems highly unlikely, so the fear lurks in back of my mind.
Just sharing that I think I may have a little insight into what you are dealing with, but I can’t say I have any profound advice. But I can wish you strength, courage, and all good decisions. I hope you find your way through this journey and discover that you are still exactly who you want to be, continuing to live your life on your own terms.
Judi
Hi Judi -
Thank you for reaching out. You guessed correctly, I am in line for clipping due to the location of my aneurysm. When I loss consciousness from dehydration, which led to the incidental finding of my aneurysm, it was the first time ever that I felt dependant upon another human being --laying on the ground. I have no memory of the fall and it scares me that I could wake-up from surgery with that same feeling of dependancy, not able to move, to speak, to see.
My blood pressure is elevated, but inline with normal due to medication and I am not a smoker. Sadly, I’ve been stress eating so I am gaining weight fast; exercise is not allowed. I also listen to guided meditation at least once per day to try to stay calm; it works, but so does Xanax, which I take daily. I’m pissed that for all I’ve done to live a healthy life I get stuck with an aneurysm and a surgery that could kill me. I find myself vascilating daily between going the surgical route or monitor. Depressed, maybe. Anxious, yes. Suicidal in a pathological way – nah, I don’t think so. But I do wish
Hey David,
My name is Merl, I’m a member of the Modsupport Team here on Ben’s Friends and I too am a neuro patient. I have to say that those ‘Do I’ or ‘Don’t I’ type questions are normal, well, that is, they were the same for me. I doubt any of us are in this position by our own personal choice. Who on earth would choose this?? Not I, that’s for damn sure.
I also have to say here the internet can be a great resource BUT that each scenario can be very individual. There are some very scary scenarios often posted online but drawing a direct line between them and myself and my situation, is near on impossible, as I’m yet to find anybody who has had the exact same scenario or outcome.
I have to disagree here. A ‘personality disorder’ is a diagnosis of which there are 10 types, according to the DSM-5. Where as ‘personality changes’ can happen to all of us over time and our own life experiences. In no way am I saying that some personality changes cannot lead to a personality disorder, but as a ‘euphemism’, not really IMHO. And here’s why I say that:
For many years prior to my health situation, I worked with people with disabilities, many with mental health issues. Although the textbook, the DSM-5, labels them in 10 categories, many people have a variation of symptoms/traits from each, similar to a venn diagram, a bit of ‘X’ a bit of ‘Y’ and a bit of ‘Z’
The DSM-5 tends to categorize them as solely X or Y or Z diagnosis and as per the textbook that’s fairly simple, but us humans are much more complicated than that, some of us can have traits of all 10 categories. To add to this, that diagram shows the circles all being the same size or equal, but the reality is that often certain traits can have a greater (overwhelming) impact and be more dominant, so certain circles maybe bigger. Then there’s the natural variability, if, today my symptoms are less, the impact on my mental health can be less. If I can keep my mind occupied, those invasive thoughts are less likely to be front and centre and, for me, I find keeping mind occupied helps heaps.
I do not believe ANY of us can go through our neuro journey without it having some sort of mental impact, in fact, I think we’d have to be fairly disconnected from our own reality for it not to have an impact. Sure, for some the impact can be manageable, but for others it can all be overwhelming. I think it’s how we manage it all that makes us the people we are.
If anybody ever tells you this is all easy or simple to deal with, they have NEVER been in this situation themselves. We know this because we have been there too, so come talk to us.
Merl from the Modsupport Team
David, I’m Moltroub, one of the moderators and I’m supposed to be on sabbatical due to some health issues. However, I wanted to reach out and let you know that we are here. I suggest before going down the dark rabbit hole, go read things @meaniffer has posted on her traverse through discovering an aneurysm. I think it might help you. And listen to Merl, like him, I too once worked with helping others, many with mental health diagnosis, some who should have had them, many more who were misdiagnosed and eventually diagnosed correctly allowing them to get on the correct meds. Insurance companies love labels it’s how they pay out.
I don’t stress eat, BH does, get healthy snacks, go for fruit, stay away from the Oreos.
@Judi has been on an amazing journey heed her advice. If you can’t jog, walk. If you can’t walk, crawl. Look at what you can do and not what you can’t.
Best of luck
hey @anon40342975 hello and unfortunately, welcome.
Been where you are mentally, and very recently. CTA for my aneurysm was June 3rd. I’m sitting right on the uncomfortable fulcrum of the seesaw between do something/don’t do something. My mind is not made up yet, I’m still armpits deep in the search for doc/institution I want to be all up in my brain.
As an endurance rider (horses), Peloton/cyclist, and former cross country runner, the worry about not being able to be active, fit, and YOU resonates completely with me. Those are concerns I also share. Absolutely a worry, and a real one. Will I even be myself if I can’t ride and train my green horse, a rescued Arabian named Rafiki? It’s a big challenge, mentally, emotionally and physically.
Running cross country, then a car accident at 20, followed by rock climbing, cycling and then taking up endurance riding - these things make me - well - ME.
I did an at home study (husband is a medic and park ranger, mom is a retired nurse - so I am lucky, and was monitored every couple minutes) on my Peloton where I staged my heart rate up in tiers and we monitored my blood pressure. I found out EXACTLY how hard I can safely exercise/work out (as best we know based on blood pressure guidelines, it’s about 150BPM and I max out of the safety range at about 170BPM) and now I use that for a gentler Peloton workout than I’m used to (but still an effective one, ESPECIALLY for my emotional health) several times a week. I’m researching pool memberships and have a goal to start swimming in the next couple weeks. Swimming is boring as heck to me but it’s gentle and effective.
I’m handwalking/handhiking much more often than riding with my horse Fiks since the CTA we often do things solo. I got a RoadID bracelet for me (and one that goes around Fiki’s legs - isn’t that awesome?) in case the worst does happen. I have a Garmin InReach with emergency activation plan for endurance that I’m going to take out to my barn for even normal hand walks and attach to my riding vest with zip ties. My best riding friends know what’s up just in case.
Especially if you’ve been fit and had a very active exercise program for life/long term, the sudden cessation of that will hit your emotional health like a train wreck. Talk with your care team about gentler but effective alternatives and explain how CRITICAL this is for your emotional well-being and thus your ability to heal after your treatment - low intensity cycling? swimming? yoga with no headstands?
If I don’t do something, my mind goes very very dark places. My body follows. NOT doing something physical is not viable option for me. Exercise is my antidepressant. So it’s finding something that works and sticking with it with the same fervor, near-obsession, and passion I did other exercise programs previously.
The very traits that make us athletes can be turned towards navigating this crazy brain journey. Come up with a plan. Manage your process in the same way. Daily sprints/fartleks, longer term training for a marathon :). I’m much more aggressively managing my diet - high protein (50-90 g/day), lots of water (1 gallon), supplements (D, E, magnesium, calcium) except for sweets. Darn that sweet tooth :).
I’m going to hold onto optimism that there’s a solution for you out there, although probably not an easy nor ideal one - but something that can help you feel/be more you as you prepare to take this next step with coiling.
I also know how you feel about a rupture. If the worst happens, it’s out of our hands right? And we have no choice but to react and adapt. But this choosing, this waiting, good grief it’s hard!
But we do have some choices. We do have some control. We do have the opportunity to lead healthy and adventurous and long lives after rupture, after treatment. I firmly believe that. Why? Because the people on these very boards tell me, show me that is possible. I’m holding onto that with a death grip.
I hear you. We are all with you. You are not alone. Share here often. As much as you can/are willing to do so.
J
Thank you for telling me about your situation.
Why is weight even a factor that you have a brain aneurysm? Isn’t that more important than gaining weight? I had an over 9 cm aneurysm that I had a craniotomy on and I am perfectly fine now. Are more important than that I think you should reevaluate the situation
My prior comment was to David. I had a clipping. Also, you know they have to do a craniotomy other than being tired all the time still, I think I will be wanting to do things like I used to, but that is the only side effect that I have had So forget about the gaining weight and not being able to exercise or worrying about how you look and get it taken care of I know quite a few people who have not survived a brain aneurysm so that you’re the lucky ones that they found it
Hi Farmwife -
I am 18 days away from a craniotomy and my chief concern is an outcome which leaves me in a compromised state. I am lucky that my neurosurgeon indicated I could monitor my aneurysm for a year or have my brain cut open now. However, monitoring included NOT running, biking and weight training while I monitored. I retired at 59 and have enjoyed a highly active physical life; I’m 64 now. My genetics are such that if I don’t exercise I put on weight, fast. I also have hypertension and cholesterol issues, but as long as I exercise my numbers stay in check. So, yes, weight and eating in absence of exercise is a deal breaker because it immediately affects my health.
I evaluated my neurosurgeon’s words as 1) exercise and rupture, or 2) monitor, become unhealthy and risk rupture or 3) craniotomy and risk stroke, infection and an entire litany of other issues. As your are aware there are no good choices.
I am acne scarred over my entire torso, face and neck; you may review ‘acne vulgaris’ with a Google search. I have walked through life devoid of attraction – a craniotomy scar adds only to my already blemished reality.
@meaniffer seems to understand my mental space in line with who I am. You may be well-intentioned, but the message of ‘get over myself’ lacks compassion. I might feel different after they bore a hole through my skull, but today, I don’t count myself as fortunate.
Yes, I do understand but you seem like you’re a healthy person and the outcome of a craniotomy is usually a good percentage. I was one of the lucky ones. I went to Johns Hopkins one of the worlds best neurosurgeons I had no underlying conditions I came through surgery, needing no rehabilitation, I’m three years out. The only affect I have is I’m very tired all the time, but I would say get it taken care of and pray for the best of the outcome like I did, but I don’t think I could live knowing that I have a brain aneurysm that is not getting fixed .
Hi David,
Down to18 days already? Not sure if time is dragging or flying for you. I’m also not sure which way I’d want it to go by. I know you are having the best fix via a craniotomy (most permanent) but also the scariest, and the recovery is far different than what I’ve had via endovascular.
You mentioned in your reply to me that you’ve lived a healthy life: eat well, exercise, etc. I do the the same. Along the way I’ve often wondered if i should have just lived without sacrifices for all the apparent good it’s done.
But that’s when I’m scared, angry, or frustrated … which can be rare or frequent depending on when you talk to me throughout this journey. But it hasn’t been smooth sailing. But if I pull myself together and think rationally i know it’s why I’m still here. Had I not done those things, I’d have likely ruptured long before mine was found. I’m not saying anyone with a rupture had a lifestyle that led to it, but we all know optimal health helps ward off pretty much anything that comes are way except maybe cancer, although some say it helps there too. And i had enough going wrong that’s too lengthy to explain here, but I’m pretty sure im lucky to be talking to you. I guess I’m just trying to say give yourself some credit for all the good you’ve done for yourself and try to trust that it will help see you through the next phase, which will be recovery. I don’t believe this one month of less than optimal health will destroy your long term healthy lifestyle. But keep going for the healthiest choices you can…it’s propably the only variable you can directly control and right now i think it might help if you feel like you have SOMETHING within your control.
Keep meditating, keep breathing, and yes, the creator of xanax is a rockstar in my book too!
Keep coming and venting, but know we’re going to keep trying to lift you up through this. It’s not because none of us understand, its just the opposite. We do understand what youre facing, and it’s why we’re here responding. Don’t give up David. You and the life you’ve built for yourself are worth the fight.
Judi
David, I’m going AMA here because you’re so close to getting your skull cracked open as I like to call a craniotomy. They don’t really but I prefer to keep humor in my life.
As someone who ruptured, I do consider you and every other member as fortunate who had an incidental find. It’s just because I’m looking at it differently. We do get your angst especially when it comes to genetic health issues (many of us have them) and then you’ve got a bugger dictating how your going to live the life you have. Kinda sucks doesn’t it?
When we talked to my Neurosurgeon she told us back then (2013 or early 2014) that no one knows why aneurysms develop, that the majority of them are found during autopsy. When we rupture, we get a 24 month count down I guess you could call it. For 24 months, we have a higher risk of dying. Each time I had an angiogram, I had to start the count over again because I would end up with a repair attempt. A craniotomy was a high possibility on my third repair but she used a ballon assist. BH and I did update our wills, clean the house and get all the yard work done. I talked a bit with my Higher Power. I call it getting my house and House in order, These are things I can control and sometimes that choice makes all the difference.
If you live alone, I’d suggest getting some easy to make meals at the ready. I love the availability of different fruits and veggies available now and I’d recommend having your favorite available for after your procedure. One of my favorite meals is a salad with tuna in it along with some Italian dressing. Of course I’m a bread eater, so I need to have some crunchy bread or crackers to go with it.
A couple of days before your procedure, make sure to stay well hydrated as it helps the RN get the IV and needles in. Breathe out when they stick you so your muscles don’t tighten, hurts less. I’ve been stuck many, many times. When you get home from your procedure, stay hydrated, eat protein, rest and repeat. We need these three things for our brain to heal. Of all the organs in our body, our brains will suck up (can’t think of the correct word which is one of the reasons I am supposed to stay off the site) the protein faster than any other. The US recommends 90 grams RDN told me and the WHO recommends 120 grams last time I checked. I use those 30 gms of yogurt with some granola thrown in and the 30 gms protein drinks. I have a mix through the day so I know I’m getting at least 90 gms not counting what I eat,
I probably could lead a healthier life style as many of us could. If you looked at me you would think I was morbidly obese. I once apologized to my Neurosurgeon for having fat legs, she assured me I had no fat in my thighs. Then on the fourth repair, stent, an MD came to my room. She had a working hypothesis that excess fat was a cause of aneurysms. She took her ultrasound machine, checked the left leg, no fat all muscle. Then she checked the right leg, no fat! Guess Dr. Q-W was correct🤣. I believe I apologized to the MD for confounding her hypothesis. My Rheum says I’m the most active patient she has and wished all her patients would keep moving to the best of their ability. Running, jogging, horseback riding, scuba and long swims are all things of my past. I walk everyday. I’m on my little tractor a good bit. I’ve got some yard work to do everyday. Maybe it’s not how I used to be active, but I’ve adapted to what I’m allowed to do now. Granted I do things I’m not supposed to do, but I choose to live my life and not be a couch potato. I think I’ll talk BH into going kayaking or canoeing down one of the rivers up in the mountains. I think the hardest thing I’ve had to learn is to look at what I can do and not what I could do.
BH is giving me looks so I best stop. I wish you all the best in your upcoming procedure and I’ll keep you in my thoughts.
Hey Judi –
I think I misrepresented my timeline. My incidental finding (MRI) was on my birthday this year, April 15. My immediate question to my PCP was can I continue with exercising. NO was his answer. Following that I had an MRA two weeks later and following that an Angiogram. I’m at 76 days of not having my old life plus 18 more until craniotomy day and then 90 days to recovery – so says the neurosurgeon. Six months of inactivity at my age is difficult to recover from; and then of course it will be winter in my timezone.
I walk a 12-minute mile for 6 miles in 80+ degree heat just to keep myself moving during this protracted period, but walking is not enough. There is already more of me than there used to be. And I am concerned that maybe I should just sit down and not move until surgery day to lessen the rupture risk.
I love my neurosurgeon because I want to believe he’s going to save me and I hate my neurosurgeon because he made me stop exercising. Well, no he didn’t, but I’m certain you understand the someone has to take the blame for this (sarcasm noted).
And lastly, as a high-achiever (albeit on the anxiety scale) I’ve thought of everything that can wrong and read about everything that can go wrong. What used to be a meritorious quality when I was in the work force has turned into an Achilles heel walking through this piece of hell.
My goal is to see my second grandchild graduate from college. She’ll be born in September and the goal puts me at about the time that I thought I would check-out of this life before my incidental finding.
Hello Moltroub,
Seemingly people are uncomfortable as I explain my medical situation; the dedhydration from running, the loss of consciousness, an MRI to rule-out a concussion and then, I have a brain aneurysm. When I use a dysphemism for my craniotomy they cringe; I actually feel a little sorry for them. It’s only 76 days, but I have experience with this horror, so I appreciate the humor of it from others.
I left Catholocism decades ago and in the past decade have tried to become more familiar with Buddhism’s Four Noble Truths, etc. But yes, I understand your point of Higher Power. I’m a planner, so my advanced healthcare directive and wealth distribution documents have been in order for several years. The house is cleaned, hard work completed. I just need to show-up for surgery with my co-pay or a blank check – that’s an entirely different issue that rattles me.
Your healthcare tips are the second time I’ve read about hydration and protein. I usually hold my breath for needle sticks, so now I know not to do that. Thanks.
The disconnect that remains is that we’ve been taught to trust the science. However, my neurosurgeon can’t or won’t tell me about recovery: the science of it. There seems to be so much variability in the days/weeks/months and years after he slices open my brain. I am lost that most aneurysm’s are discovered during autopsy, but for that statistic, seemingly it’s unknown what awaits. I’ve only been told that I’ll have surgery, be in the ICU for 3 days, be released from the hospital, 2-week follow-up, and a 90-day follow-up. In the meantime, the internet talks about headaches, personality changes, stroke, blood clots, to name a few.
I think I’ve wrapped my head around having an aneurysm finally. Still grasping for an understanding of what happens after surgery.
Gosh I’m going to get a look from BH again…science is a love hate relationship. I love it but I hate it when people pull stats out of the Oosphere. I want bonafide collected data, but in our world of brain aneurysms they only come from relatively small numbers of subjects.
BH’s Granny had what we presume to be a ruptured aneurysm in 1960. She had a metal plate put in at the front of her brain. The village doctor went to her home to check on her when he found out she had left the cotton mill with a bad headache. He drove her to the hospital. She had emergency surgery. Small town in Alabama.
When it would get hot, she’d be hilariously funny. The first time I saw this happen, I was putting in a raised strawberry garden and thought she was getting heat stroke. I hollered for the family sitting inside to bring a cool cloth and had her sit in the shade of the front porch until she could tell me who I was. She decided before she cooled down that I was her long deceased husband because I was wearing the same brand of overalls he wore. She lived to be 84. Craniotomy procedures have come a long way in 63 years, medical science keeps advancing.
If I had read the book about cerebral aneurysms before I popped my pipe, I probably wouldn’t have survived. We’ve been told there’s no medical reason I should have survived. But here I am, once again going AMA, must be a psychological issue on following authority figures, perhaps Oppositioal Conduct Disorder 
Your surgeon can’t tell you what’s going to happen for you after he does his job. We are all so vastly different in personality and drive. When I ruptured the Residents told BH not to expect much. They didn’t know if I’d be a vegetable, remember anyone or how to do much of anything, I knew BH, I knew I dropped my good Japanese saw and said to get it off the concrete floor of the cellar. It was a 60 mile drive that wasn’t going to happen, I forgot what my feet were supposed to do so I could walk. I wasn’t released by my doc to get out of bed yet but I didn’t care what the rules were, I had lumbar surgery year before and that neurosurgeon told me I had to walk every day. It had been a couple of weeks since I had walked. Seems the hospital I was flown out of forgot that bit of health history when I was flown to Baptist.
Best advice I can share is to have a positive mindset along with a bit of humor. I used to plow through hurdles, I’m old enough now to have learned I can just walk around them.